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meredith0903

Would like to hear from people with Sjogrens

Posted by @meredith0903 in Autoimmune Diseases, Apr 12, 2012

I was diagnosed with Sjogrens at age 23. I am now 38 and my main symptoms (aside from the dry eyes and mouth), were fatigue and numbness. Lately I have been getting concerned about cognitive problems. I seem to be more forgetful, have trouble concentrating, trouble with numbers, and coming up with solutions to problems. I feel like it is starting to affect my job and I can't afford not to work. I have been blaming it on my constant fatigue, but now am not so sure. I would love to hear from anyone who has similar symptoms! Thank you.

Tags: Autoimmune diseases, sjogrens syndrome

powerofpositive

Posted by @powerofpositive, Apr 13, 2012

I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and ...., I'm 54, Had intense eye & thirst issues since @2006. Fatigue indescribable,off and on,then always & ever increasing with sleep and pain isssues, etc. I no longer work. Miss it, but am finding and revisiting hobbies. I have noticed now that the world wind of the last year is slowing down (Diagnoses, 2nd opinions, Chemo (talk about a fog) ego maniac physicians, major problems with my medical records...which I advocate to others now to obtain on an ongoing basis...it is amazing the errors over and over 'cause they copy off each others notes, 9why sit there talking to them...they obviously were'nt listening) miss quote you, ommit issues brought up etc.....! Sad state of affairs and may the heavens help us all if electronic medical records goes national...with the errors in my chart, like cardiac surgery in my 20's that never occured it is insanity at best. And I'm not alone, the more I speak/advocate for this, so many others have horror stories. All that said. The fatigue has improved alot from where it was, stress, anxiety and depression post diagnoses/treatment added a different dimension to the fatigue. But it has improved. Sometimes we can be hard on ourselves Fatigue surely affects the cognitive process to varying degrees. Is there depression? Some adjust easily to chronic illness, others not so much. Talk to your Rheumy ( and get the records), try to sort this out. Could be a few issues compiled. Oh, I had issues with numbers prior to diagnoses/treatment but not now. Fatigue? Sjogrens? Pain? Who knows?

meredith0903

Posted by @meredith0903, Apr 13, 2012

Thank you for replying. I've set up an appointment to talk to my Rheumatologist. I am just concerned that I won't be able to work and financially, this is not an option for our family.

sidepockets

Posted by @sidepockets, Jun 22, 2012

Dear Power:
So true what you have expressed and I could not agree more. I now write everything down and I make the Dr. take it. I want it in my EHR's and they are coming real soon. So, straighten out these hapless professionals. If I had done what they do in my career I would have been bounced out on my ear.

powerofpositive

Posted by @powerofpositive, Jul 9, 2012

Yes. I completely agree, it all must be straightened out, but the process is utterly fustrating and so horribly time consuming. I have thought at times to just ignore it. But because I was such a stickler for notes (was a nurse) being accurate and objective so the patient is properly advocated for, I expect no less from others. Not a tall order at all really from where I came from, but obviously it is from many others. And not only would I have been tossed out for such sub-par work, I wouldn't have been able to consiously do that : slighting my patients.
We need complete-open-communication with all aspects of our medical records. I currently have to deal with a third party in obtaing them and by golly they never send the proper notes, and then to tend to the errors/adendems etc., It is a hefty portion of time wasted/working on something that is so vitally important, yet continues, is fustrating, and is counter productive in stress levels...which isn't helpful for ill people. Proper documentation is a basic right of medical care! It should not be an exception. We all make mistakes, but this is to much!
I bought a small recorder recently so that I can bring it to visits, announce the visit will be recorded and see if this helps the situation.
We should all be accountable for our actions/work. We pay dearly for healthcare and such a broken state it is in. Since records are going national and there is legisation underway that will enable law enforcement to extract information, (medications/conditions etc.) then it is imperative that they be correct, for many reasons....the first and foremost being our own health advocation.

sidepockets

Posted by @sidepockets, Jul 10, 2012

You are a Maverick in your actions and I commend you. I learned a lot here as well. I am also tired of being ignored and treated like an incorrect medical record. We are lucky to get 15 minutes out of a doctor. Now really, the only way we can fully tell a doctor what is wrong with us is to write it down, have him read it. Sure, he/she will read it. LOL. and then leave the doctors office. All of these autoimmune diseases have very, very, weird symptoms. Some I hated to discuss because in the back of my mind I know they are thinking, (liar, attention seeker, hypochondriac, histrionic, menopausal, neurotic, crazy, woman). Funny though, for twenty eight years in a high powered, male dominated profession no one ever looked at me that way. Not until I became sick, did this industry of health professionals make me despise them. I like your style and passion to our plight. We have to start demanding respect from these so-called professionals. I guess I need to start pulling more of my records. I already have a 50 pound box, literally, no joke. Thank you for the education as there is nothing more powerful than being armed with knowledge.

marilly

Posted by @marilly, Jul 10, 2012

You go girl! 🙂 I'd never thought of recording a visit. I'm sure some doctors would be horrified. We really need a printout of every thing that is written or recorded electronically as well to be on the safe side.

I think cut and paste has become standard along with incorrect or misspelled medicine names. On a followup visit, I discovered that one of my blood pressure meds was incorrectly listed in my chart. The aid who took my blood pressure and listed my meds was not listening and wrote down what she thought I said. Since she is not a nurse or doctor, she doesn't know the drugs and had no idea what she had done. I shudder to think what other errors are made on a daily basis.

sidepockets

Posted by @sidepockets, Jul 12, 2012

Yes, I have been shuddering for years,regarding your statement regarding errors. In my opinion, this is utterly a disgrace. I have watched this for decades. I handled the care of my ailing mother for years. I had more screaming matches with Doc's than I would like to admit. Sometimes the words that spilled out of their mouth's or their nurses were complete lack of regard for their profession. For those of us who are perfectionists and on this site, and I don't know why there appears to be a common thread of perfectionism. Can this possibly be a personality trait of this disorder. I do know that certain traits go hand in hand with some illnesses. Need more research on that one! I am not an belligerent personality but I am intolerant with a profession that demands respect but does not give any in return. Where is the fairness here? We deserve so much better. We are supposed to be dedicated to what we do for a living. Have we lost the intelligence that once graced this planet. Or have we just become complacent? Sorry, I am venting again. However, do we deserve this type care and disinterest from professionals. I definitely think not. I do not want to leave this earth as my mother did. Neglected in a nursing home. whenever I had to attend to my career and family. I felt like a prison warden overseeing staff at a nursing home that cared only about how much overtime they could collect. What is wrong with this picture? I can't be a doctor, lawyer, chief, cook, and bottle washer for the rest of my life. I now have to take care of me and have compassion for mankind. Alright, I am off my soap box. Thanks for listening but what I read here makes me see a commonality that is not what we deserve. I do know now, that I was not alone in this very difficult plight of ours. Take care all. Keep the faith and believe in yourselves. You really are not alone. Hugs to All, Dee

sidepockets

Posted by @sidepockets, Jul 12, 2012

Hi PowerofPositive:
Just checking in to see how you are? I am pretty much the same. You know, everyday can be a struggle. So much garbage. We tried so hard to be perfectionists trying to accomplish and end goal and always there is an incompetent or road block in our way. What has happened to the integrity of our society. Do you remember when people cared and listened to you and they actually relayed accurate information? Oh, the good old days and how we long for them. I read these posts and from the nuances I am picking up we are a group of intelligent people here. No baloney, just women possibly some men, looking for help that does n't seem to come. Yes, with a lot of autoimmune diseases comes depression, why I don't know. I have read and I wish I could quote from it but the brain fog takes over ----- a lot--- that the brain actually suffers from inflammation as well. They did a study and they used fairly high doses of steroids that appeared to relieve the symptoms of cognitive impairment. In my humble, non medical opinion, even though I read so much I think I could have taught these doctors a thing or two. I believe, there would have to be a depression in the mix. Any disorder that can potentially hit the brain and cause cognitive difficulties which slows our thinking would have to bring on episodes of depression. Take a look at Alzheimers patients. Another lovely disease process. This is known to cause depression. I have watched enough family members with that. Forgive me if I sound bold, this has always been my personality. There were times which I could not believe, I actually stated, to one doctor, that he was lacking in education as I was walking out his door and I watched his mouth drop. I was not always a bold personality until I realized if I did not speak my mind nothing would change for me or anyone else seeking the truth. I believe docs have a speech that they use on the patients that they find trying so they can go on to something that is easier and less taxing for them to accomplish. It is though they look for instant gratification in their practice. Pick the easy stuff as it is quick and easy. Just dump the difficult and hopefully they won't come back. You know, almost like a sales pitch. I know for a fact not all doctors are like that however there is a large percentage. This disease and others are starting to receive respect. A very large Metropolitan Hospital has a building specifically for Sjogrens patients staffed with Rheumatologists. Opthamologists. Neurologists,Oncologists and many other specialists to treat and cornfirm this diagnosis. I know this as I called them. I can't state who they are as this I am sure would be a conflict of interest on this site. America is finally picking up where the Asian Countries have been studying and developing new drugs for this disorder as well as Lupus, R/A. America is not the trail blazer of this disease. Two Asian doctors diagnosed me. One doc of Indian descent and one from China and they knew all about it. Hugs to you. Dee

racheyathome

Posted by @racheyathome, Mar 18, 2013

Why would this sjogrens 'wing' at a metropolitan hospital include oncology? I understand the other related docs like rheum and opth.

marilly

Posted by @marilly, Apr 15, 2012

Hi - I was never given a definite dx of Sjogren's, but my Schirmer's (sp?) eye test showed severe dryness, and I have been dxd with several other autoimmune diseases. Is there a specific test for Sjogren's? I use Restasis and have had my tear ducts plugged. My eyes are better since the tear ducts were plugged, but I still have to use drops frequently. Fatigue is my biggest complaint. Anything I do tires me out to the point that I have to take a nap. It's very frustrating. I'm wondering if there is anything I could take to improve my stamina. Currently, I take Imuran. It may control some symptoms, but I feel terrible and am very limited in what I can do.

meredith0903

Posted by @meredith0903, Apr 16, 2012

I was diagnosed after an exam, Schirmer's test and a biopsy. ( They took a piece of tissue from the inside of my mouth.) There is no one test for Sjogrens, rather a combination of symptoms and tests to determine a diagnosis.

marilly

Posted by @marilly, Apr 16, 2012

I hope this is the right spot to post a reply to Meredith0903 and Marian Green. Thank you both for replying. I think my dx was based on the Schirmer's test, blood tests for inflammation and the fact that I have other autoimmune diseases. As I said, my fatigue is debilitating. Of course, I'm 72, so that's part of it, too, I'm sure. What medicines do you take?

sidepockets

Posted by @sidepockets, Jul 10, 2012

Marilly,
Yes, there is but it sometimes does not become sero positive for a while as in my case, I just think the blood labs stink! The test is under two categories; Category A, Systemic Lupus Profile A which has seven specific tests.RNP Antibodies, Smith Antibodies, RA Latex Turbid., Antichromatin Antibodies, Sjogren's Anti-SS-A,
Sjogren's Anti-SS-B; Anti-DNA (DS) Ab Qn. If you are positive for Sjogren's SS-A they say that is is secondary to another autoimmune disease. I wonder about that though. It does not make any sense in my case. I am told I have Primary Sjogren's Anti-SS-B. Next Profile Systemic Lupus Profile B; Complement C4, Serum, Complement C3 Serum, ANA Direct. A "Vectra DA" test was performed on me to see disease activity in my body. This is normally used to follow Disease Activity in R/A patients this test is not a definitive test for R/A it monitors activity and response to chemical treatment you are receiving. Mine came back moderate/high while taking methylprednisolone. The Plaquenil worked very well with me, albeit a short time. I felt like my old self again.But I am supposed to be on an autoimmune cocktail of drugs. Medrol, Plaquenil, Methotrexate. I cannot tolerate the Methotrexate. Allergic to that stuff. It has just made me very sick again. I am now on high dose of Prednisone now. I feel crappy again. I was told that I need to be on a biologic such as what you are on. Sorry, just can't afford it. I know you feel terrible because that is what this disease can do. I know your frustration and agony. Don't you just get tired of dragging your body around like a rag? I call it the slow burn. Like you are slowly losing yourself. I wonder just how debilitating this can get. As though it is not debilitating enough. I don't know what to do about improving your stamina, I fought this symptom for years and I have lost the battle. I try to just pace myself and if the dishes don't get done or a load of laundry does not get done I figure it will still be here no matter what. So, I just shut the door or close my eyes to the mess. I do what I can. I used to be so active, as I am sure you were too. That is what we miss the most. Who we used to be. Hang in there, we need to adapt no matter how hard that is. I know I am still in the denial stage. I am sure one day I will get there. Life is a tough road. They said it was n't going to be easy and they were n't kidding. Keep your chin up and push those doctors for answers. If we all push together we may all accomplish the impossible.

marilly

Posted by @marilly, Jul 10, 2012

sidepockets - Thanks for the response. I don't recall whether those specific tests were done or not. I will check on that. I did not have a biopsy of lip tissue, which someone else mentioned. I know the presence of my other autoimmune diseases - relapsing polychondritis, vasculitis and Crohn's - complicates the issue. I thought when I got my intestinal bleeding and anemia under control that I would feel better, but it didn't happen. I do get tired of dragging myself around, like a rag, as you say. It is also embarrassing, because I don't look sick! I'm sure there are people, maybe even doctors, who think this is largely in my head.

Take care, and thanks again. I had given up hope of ever hearing from anyone!

sidepockets

Posted by @sidepockets, Jul 12, 2012

Hi Marilly,
It's Dee again. I am like a kid in a candy store since I found this site. I felt like an alien with this disease. My heart goes out to you and everyone here. Oh, you are not sick enough let's throw Crohn's into the mix too. My brother in law had this in the 70's and nearly died because they thought he was faking. Faking, really? He was 6'2, weighed 220. Became so weak he could not brush his teeth. All he could do was lay. My sister has this disease too. Just having Crohns can put you over the edge. My brother in law was saved by high dose steroids at the time. And now he is having his 60th birthday in a few days. He is taking the drug called 6MP; also known as Mercaptopurine. It was tough for him to take it but he hung in there and finally after all the operations and only a couple inches of intestine left he is stable. He was not supposed to live this long. He ran a Crohn's support group. At his worst he was 105 pounds. I was watching him die as a teenager. I know the old "Oh, you look fine routine." My brother-in-law looks better than ever now. At 60, he looks about 40. He can exercise now and follows a strict routine of rest, exercise and limits his activities every single day. I give him credit. I am tired of people saying I look great. I am going to start carrying a picture of myself around before I got sick and ask them if I still look the same. What a contrast. I look old and haggard at 54. I should not look this way. But they still say, "You look great". No, I don't. I look horrible. We always say to ourselves, if they can fix this I know I will feel so much better. I am tired of waiting to feel better and I am coming to terms that this may be as good as it gets. Ugh! Don't worry about the doctors and what they think. I know we need them for our health care which of course is very important. But these folks are not living what we live and they really cannot relate at all. It must be nice to be healthy with a great career. I know I miss my career. You have so many autoimmune diseases you have to be struggling. This is very common to have Sjogrens with these autoimmune diseases. I don't know how to put on a link but go to Sjogrenssyndrome.org they have a great video and a wealth of information. Some authorities call this an orphan disease. It really is nt it is just not diagnosed and women primarily get this. So, there are 2 strikes against us. I wish you well, stay strong, take care and be kind to yourself. Everyone with ill health needs support. People need to understand that too often we are pushed aside because we have a chronic illness/illneses. I believe doctors get annoyed if it is nt something they can fix with an operation like appendicitis. Is there really people out there that think we would want to live like this? I want my darn life back. I had a great life. I loved life. I was blessed. Now, this is my cross to bear. So, we need to make the best of it and enjoy every moment of relief we get. Write soon. I now feel connected to the rest of the world again. Hugs to you, Dee

mariongreen

Posted by @mariongreen, Apr 16, 2012

I have had sjogren's for several years. I use restasis which has helped a lot. I continue to work and work long hours since the diagnosis. I am 62. I am optimisitc that I will continue to lead an active life.

meredith0903

Posted by @meredith0903, Apr 16, 2012

That's great to hear! Thank you for replying.

mimafowler

Posted by @mimafowler, Jun 22, 2012

hi, i have sjogrens and i'm 58..i'm grateful because i can work also. do you all have skin problems, kidney problems and joint pain. i don't know anyone that has this. i have nice dr.s but they don't tell me to much. what about brain fog..

sidepockets

Posted by @sidepockets, Jul 10, 2012

Hi Mima,
Sorry to hear the dx of Sjogrens. Welcome to the club. Symptoms are so variable with this disease for each patient. Yes, I had skin problems, extremely dry, sensitive when the disease became full blown. Medrol and Plaquenil has helped with that. Much better now. Mild kidney problems right now. I did have unexplained bleeding from the urinary tract for a while. They told me it could be cancer it was not, it was from the disease. As for brain fog, this is strange a this is also a symptom of Lupus. I have it bad. I throw away my car keys. I have difficulty spelling now and at one time I could spell any word with ease. I throw drinks out in the trash can instead of in the sink. I have said some pretty embarrassing things in public as the words come out - not the way they should. I mispronounce syllables at times. I can't tell you what I said but it had a lot of people gasping and in hysterics. Just as I was about to finish the word I was able to catch myself but the people around me knew what was about to come out of my mouth. It took me months to go back to the Ice Cream Parlor. My daughter was livid that I would not go back she loved this place. So brain fog, yeah, I know about that. I can barely type anymore, I just can no longer handle a key board. Sometimes I feel completely frustrated. I am ambivalent regarding my diagnosis, I definitely have Sjogrens however, the doctor told me I have R/A too. I wonder though, I have no joint disfigurement. Time to keep digging with this autoimmune stuff. At least, I can say that in one lifetime I feel I lived two totally different lives. One good, one not so good. But I try to take the good and the bad. My daughter keeps me going. Hope I answered this for you. Yes, it is a mystery to me too.

marilly

Posted by @marilly, Jul 10, 2012

sidepockets - I never associated my brain fog w/Sjogrens, but I knew it had to come from one of my illnesses. I find myself mispronouncing words or using the wrong words when I know the right ones. I have wondered about that and have often thought I might be becoming senile. I actually do better on the computer because I can see the errors. Even if I correct myself when I'm speaking I'm embarrassed.

mimafowler

Posted by @mimafowler, Jul 11, 2012

dear marilly and sidepockets, so glad to hear from you. i have primary sjogrens with distal renal tubular acidosis, also arthritis not ra. i take evoxac for my mouth which made my tongue and mouth stop hurting.. unfortunally i have lost alot of my teeth due to very little saliva. the dentist recommended biotene for tooth paste, this was a great thing for me because i cant tolerate regular toothpaste. also evoxac really helps make saliva, at first i choked it was so much. one of my problems was people had trouble understanding when i spoke now so much better and i no longer choke o food. but i still drink alot of fluid. i use restasis 3 times aday for eyes and tears 4 times aday. my renal disease is caused by sjogrens. i didnt know i had renal disease because i guess my former dr didnt take my labs seriously. now i have to see nephrologist every 3 months. so please ask your dr for lab results. if i had been more pro active maybe i wouldnt have ended up in hospital for a week and was then told my true diagnosis. also now see rhematologist every 4 months. i really loved plaqeunal, it really helped my muscle and joint pain. but after 3 weeks i developed head to toe hives and n/v and kidneys tried to fall and in hospital 5days. tried methotrexate but got shingles 2 times ouch. now on sulfasalzene , waiting to see if helps joint pain. because of pain at night cant sleep which makes me forgetful.. i could not understand why my spelling is worse and then i read article about brain fog and that made me feel better, that i wasnt loosing my mind. i suspected for years that i had sjogrens but even wth positve ana the dr just blew it off. all this started when i was 42, now im 58. sorry for all typos im not a typer. some days i fill positive, somedays i feel down about this illness..im trying to take it 1 day at a time. i have supportive family and friends but i still feel like a complainer. i joined the sjogrems site and they sent some good info. they have a quarterly news letter also that drs who have this specialty participate in. they sent aiso info on groups you can go to . in my state they are 100 miles away. but i may contact any way. sorry so long winded, just nice to talk to someone who can understand. marilly i also have same problem and sometimes i see people look at me funny then i know i must of used wronge word or something not correct. but i remind myself to pay more attention and i smile alot and know this is kinda out of my control.. please write again. mima

marilly

Posted by @marilly, Jul 11, 2012

Hi, Mima - Do you have a link to the Sjogren's site? I'd like to join and get the newsletter. I may increase my Restasis to 3 times daily. I see my eye doctor this month and will ask. To make matters worse, I have rosacea in my eyes. I had known about rosacea on my face, but no one had ever mentioned the eye problem. He plugged my tear ducts, which helped, and prescribed doxycycline. However, the combination of Imuran and doxy caused my liver enzymes to soar and I had to get off the doxycycline. If it's not one thing...

Do you know which lab tests reveal kidney involvement and how often they should be repeated? I don't think I'm on any schedule of lab work except at my hematologists. He monitors my anemia and I see him more often than anyone. My rheumy recently sent me for a nerve test because the numbness in my feet is getting worse and I'm having episodes of numbness in my hands as well. The neurologist, who was about 12, said everything looked OK, and I haven't heard from my rheumy. I don't know what to think. Everything is NOT OK!!

Thanks for posting, Mima. Your info is really helpful. Good luck.

sidepockets

Posted by @sidepockets, Jul 12, 2012

Hi Mima, I am finally starting to realize that I am not the only person in the whole wide world with this weird disease and even stranger symptoms. I am so tired of feeling like an outcast regarding my health issues. Renal Tubular acidosis. I tried to tell one of my doctors that I thought that was what I had and she freaked out. When I was urinating, and even defecating,( I don't like being graphic but if we don't come out of hiding we will never be heard.) I had burning urine all the time and even when I would defecate. My blood work was showing odd signs of dehydration yet I was drinking all the time. My urine now has no color which is abnormal and another abnormality of which I forget. I have to pull my electronic records off my computer. But if I do that I may lose this post too. I just replied to someone, very lengthy and hit a wrong key and poof it is somewhere in cyberspace. My hands don't work too great anymore or my mind. Wow, I cannot believe that we all have a form of the identical symptoms and yet so many of us were ignored. I hated going to these doctors, I searched and searched until I found, well I can't say I found him a phlebotomist told me about him. She said to me, listen, if this guy can't figure it out, no one can. She was right. We even have to network our health. Mima, I can give you words of advice when you feel down, think about us on this site, chances are we are feeling down too. We are all struggling with this bizarre disease everyday and boy, is it a struggle. People can support each other from a distance. Believe me, I am not one to post or blog however, this is our plight. Our right to be heard and believed. Question, were you taking the brand name Plaquenil or the lovely generic. I ended up calling Sanofi the drug maker which I would never do to thank them for the quality of their product. I hope I can post that. It seems to cause very few side effects and I get side effects from everything. The Plaquenil was a miracle for about 6 or 8 weeks and symptoms starting popping through again. I was to take the cocktail of Metho, Plaquenil and Prednison (steroids). Forget the Metho, at least for me. Started itching, swelling in strange places and feeling just awful. This was my second try at the Metho. Mima, you need to vent. Stop trying to suck it up. Women are always told to suck it up. We need to be heard and understood. We have to talk about this and the medical profession needs to listen. I write too much. They are probably cutting me off. We all have a lot say and we are here to listen. Write often, this is therapy for all. Hugs, Dee

sidepockets

Posted by @sidepockets, Jul 13, 2012

Hi Marion:
Some positive news here is good. You have a great attitude, with a lot of positive thinking. I need a good dose of positive thinking. I would like to think myself healthy again. This just becomes so old so quickly. I find I am in a rut of, "now what is going to happen?" I used to be a positive, bubbly person. Laughter truly is the best medicine. Live, love, laugh. Take care and stay positive.

sidepockets

Posted by @sidepockets, Jun 22, 2012

Hi Meredith,
I have the identical symptoms that you have. My problems began at 30 with Hashimoto's and other very peculiar symptoms. In retrospect, it was Sjogrens. I always had rheumatic problems since I was a child. Horrific, yes, horrific pains in my legs as a child and I would scream at 3:00 am and wake up my parents who would put extremely hot compresses on my legs until I fell asleep. I never felt like a healthy child or adult. Always tired, always sick with some bronchial problem at least once per month. I always overslept during my career in marketing. I finally had to leave my career because doctors were baffled. I was dismissed with my symptoms. I went on social security for so called depression. I later realized my mother had Sjogrens as well which even today it is a tragedy as she never got the help she needed. I believe the lack of treatment was my mother's demise. I am your twin with symptoms, HOWEVER, I was just diagnosed in December 2011. I am taking Plaquenil and a low dose of steroids; Medrol 4 mg. per day. Plaquenil is 200 mg. x 2 per day. I became allergic to everything in my later years so I was scared to death to take Plaquenil. I finally went on it when I got the diagnosis. My Rheum. get pushing the drug on me without a definitive diagnosis and I was frightened to take a drug without a diagnosis. I was also diagnosed with seronegative arthritis. I met with a jeweler today who told me she had horrible symptoms and they put her on this horrible drug called Plaquenil. I had to laugh as this drug saved my life. Of course, I laughed to myself as her R/A luckily for her must not have been too bad. Because of the Plaquenil and low dose steroids I am starting to get my life back after ten years of shear heck. Also, my doctor is still pushing the drug Methotrexate but I had an adverse reaction similar to an allergic reaction from the injection. The Metho is a stronger DMARD medication than Plaquenil. Sanofi Adventis is the brand name manufacturer and the generic gave me a set back in my symptoms. Now, you are not experiencing fatigue you are experiencing weakness. This disease is a disease of dehydration and this disease affects everyone differently. Oh, to just have dry eyes and dry mouth I would consider myself perfectly healthy. I love to hear that some people are so optimistic but they do not have our symptoms. Before my diagnosis I kept telling my Rheum. that I felt like I was experiencing dementia. He ordered an MRI and nothing was a miss. However, I know it as a fact that this disease causes inflammation of the brain and you feel as though you are going senile. I know this well when I spin around trying to figure out what I am supposed to be doing. I call it the slow burn into the abyss. I read an article and I can't recall who it was written by but it was a major study on mild cognitive disfunction. Otherwise known as mild dementia. This study stated that steroids will assist in bringing the cognitive difficulties under control. I do not want to sound as though I know everything regarding this disease but I lived through this nightmare for a decade and longer just milder when it first hit. You have peripheral neuropathy. Do you notice any burning sensations in the bottom of your feet. Any strange muscular cramping? The list goes on and on. Please do not confuse your fatigue with weakness that was my biggest issue, I kept saying I am so tired. When I realized, no, I am just so weak. I used to throw 50 pound bags of dog food over my shoulder and slowly my boyfriend watched me waste away to someone who could not even get out of bed. You need to be drinking plenty of fluids all day. You are dehydrating. Your bun to creatinine ratio will sometimes show that, as I asked a doctor why that was and I was having urinary problems and his statement was Oh, "You have mild dehydration." Really? I was drinking more water than usual because I was always dry. This was the first clue. The Plaquenil takes a while to work and then one day you wake up on time and the strange symptoms start going away. My bleeding stopped from the throat, mouth, and nose and even my vaginal area. Oh, I was the great mystery with my doctors. The worst was the burning tongue, and the choking on dry food and regurgitating what I had just swallowed. This felt like I was having a heart attack. Scared the daylights out of me. Again, they had no idea. The frustration was unbelievable. I remember the first sign of improvement when I awoke and I could literally hear fluid running into my ear. Even my ears dried out. Please answer this question if you will, what is your medication regimen and I hope it is not just eye drops and special mouth products. It sounds to me as though you are not getting appropriate treatment. For those of us who have severe symptoms we are in quite an ill state of health. This is a variable disease. I would like to know if you ever watched the program, Mystery Diagnosis? There is a segment called the Woman Who Could Not Cry. This woman, her name is Linda is from Philadelphia where I lived for 50 years. Her plight is quite similar. Plaqeunil costs me 200.00 per month out of pocket. I tell the pharmacy every month I don't care what it costs. It is giving me my life back. Many doctors are totally clueless to this disease and I mean most. A rheumatologist is the only one to help get the medicine you need. My doc wants me on a biologic but forget that - way to dangerous for me and I am trying to raise my daughter. I need to live to see her through in life as I am a single parent with a very fragmented family. I hope you are getting the appropriate treatment. You got the diagnosis but I wonder about your care. I did not get the diagnosis but now that I know I am getting appropriate treatment. My life is not perfect but I am no longer that strange person that I was with the disease at its peak due to lack of a diagnosis. There is a drug called Gabapentin for peripheral neuropathy which you are expressing that you have the old familiar strange numbness. This disease can destroy your future, your life, your career. I know, it happened to me. Do your hands change strange colors, if so you have Raynauds. I have that too. Any severe joint pain? Do you have difficulty spelling words all of a sudden? I was an avid speller and all of a sudden I could not spell any words. It felt like I was having a stroke. I hope you are getting the medication you need, now if you are on this medication I will worry that my symptoms will revert back. Oh yes, I can throw in the skin problems, I dried up like a prune all of a sudden and the skin would just slough off my body. It was horrible. But mostly all I could do was drag my body around in a fog of weakness. I was always dressed with makeup and everything had to be perfect. Now, I am lucky enough to get dressed but this is greatly improving. Yes, this is truly a mystery illness but it sounds like you need a health care partner, I hope you are successful with this. You will be in my thoughts always. As your story mirrors mine and I know your pain. I really know your pain, frustrations, sadness, and praying you can get your old self back. Every week I notice a new improvement. I can write again without leaving out letters. I can go to the stores that I need to go instead of telling my daughter that I just don't have it in me to go to another store. I hope my plight helps you. I hope I gave you information that will help. I hope you have an understanding support group and family. If not, find a Sjogrens support group. Sometimes they are hard to find. For me now, since I moved from the comfort of my great city of Philadelphia had I known I was going to finally get a diagnosis I would have never moved to the mountains of Pennsylvania. All is not lost, fight for what you need. I have had to fight for everything but fight I did. You deserve your life back. At least there are treatments out there. And they work if you can get over any issues you may have with these treatments. Take care of you. Demand it!
Sincerely,
Dee

afrobin

Posted by @afrobin, Jul 9, 2012

I'm sorry to hear about all your troubles. How nice of you to share and try to help others. You seem very positive in spite of all that you are going through. I wish you all the best.
I have read that 'they' are beginning to see a link between immunizations and immune disorders. There has been a huge increase in diseases affecting the immune system and it seems to make sense that with the increase in flu shots and hepatitis shots for kids in school etc...that we are provoking the immune system beyond what it can handle. My 4 year old grandson has so many allergies that all began with a bad reaction to his MMR shot. Look at the allergies that so many children have to peanut butter... When we were kids that's all we ate for lunch!

And please, folks, get copies of all your test results, do your own research, know side effects of medications, read Dr. Weil and Dr Oz and get fit and a good weight. Remember, carbs increase inflammation in the body so eliminate 90% of bread, rice, pasta, cereals and potatoes from the diet. Swim, go to daily fitness classes, eat your 6 - 10 veggies per day. Keep positive and at a minimum take your winter 1000 - 2000 IU of vitamin D, daily Omega 3s and multiple Bs. Get out in the sun at least some of the time without sunscreen so you can absorb the vitamin D. Get plenty of sleep (I take natural progesterone cream and magnesium at bedtime) and engage in activities that you love. Keep positive and maintain relationships. All the best to you all!

P.S. Btw, my 30 year old daughter may have Sjogrens. She is undergoing so many tests to rule out other conditions. She does have dry eyes, drinks a lot, has chronic pain in her neck, back and knees, sleeps poorly because her arms will fall asleep when she lies on them and she has digestive problems. It seems like fibromyalgia to me...or maybe Sjogrens. I regret having her immunized against Hepatitis B or was it A...12 years ago.

sidepockets

Posted by @sidepockets, Jul 10, 2012

Sounds like Sjogrens to me. Sounds so familiar. Yes, my daughter was immunized against Hep B 16 years ago. I hate to say it but she has a butterfly rash now and joint pain. Nothing showed in blood work yet. My bloodwork was not positive for years. I have learned that most opthamologists (sp?) diagnose Sjogrens first via a Schirmers test. I worked backwards. Finally positive blood work then went to see a top notch eye doctor. My eyes were so dry they were like sand paper. The can also do a biopsy of the lip. Have not done that yet.These are the appropriate steps to take for a preliminary diagnosis. Unfortunately, I worked backwards. When you have this peculiar disorder you don't know where to start first. I hope she does not have Sjog. or some really mild form. neck pain is disturbing though. I know that all too well. I don't want to be Negative Nancy but I have had titanium implanted in my neck twice. The bones were compressing the spinal cord. Not fun! Your post was a wealth of information and I believe you are 100% correct in your thinking. They will just brush this under the rug too, unfortunately. I wish I could go back and do things differently. I believe the polio vaccine screwed me up as a child. Became a sickly child after that. So, that being stated. Yes, I really, really wonder. Good Luck with this autoimmune debacle. I wish the best for your daughter and you. Take Care. We are all in this together.

sidepockets

Posted by @sidepockets, Jul 10, 2012

Remember, you are not a quitter, but you are disabled. Any financial assistance would help you. SSDI is not easy and I know how you feel. Just writing out a check or looking for something that you know you could find easily becomes an all day affair. Oh, and having to concentrate in front of a board of appeals is enough to put you into a tail spin. Concentrate! What is that like. I forget. Good Luck Meredith - don't give up. Dee

afrobin

Posted by @afrobin, Jul 10, 2012

Thank you Sidepockets/Dee for your quick reply and support. I have taken note of your info re the Schirmers test. Did the titanium implants in your neck help?My daughter is in constant pain with her neck and gets very irritable (and I'm afraid it will drive off her BF.). Kate just got MRI results this week which show compression at 5 levels of her spine. When you suffer with chronic pain, it changes who you are which is such a shame. Kate was a cheerful, lighthearted girl. She can still laugh and enjoy life but has a tendency to overreact to things and become touchy and cranky..
As a child as soon as high school started (age 12 here in Quebec) Kate carried her backpack full of books all the way to school each day. I used to watch her straining her neck and leaning forward as she left the house. That's when the pain, physio, daily Advil all started. She played the violin quiet seriously and that was another assault on her neck...and now she is paying the price. This may simply (and still seriously) be a spinal issue...but she has had dry eyes and mouth for quite a few years and drinks so much water and slathers on lip creams. A while back I thought she was diabetic she drank so much.
I must say, thank God for Medicare. Her doctor sees her the same day (because she works for an intl company that has its own doctor in the bldg) and the tests are done the next week or so. So things are moving quickly. We ruled out MS which was a big relief. We don't have the added worry of the cost of anything. If she were unemployed or retired like I am, she would get the same care. Go Obama go! LOL

Dee, are you in the best shape you can be? I mean, do you eat well, get plenty of exercise, sunshine and are you managing to keep a healthy weight? I think we can all improve our energy levels, physical strength and general health so that we tire less easily, have more stamina and enjoy improved mood.
An example: last fall my new doctor wanted me on statins because my cholesterol was a bit over the limit. She was adamant and I refused. I told her that I would make some lifestyle changes and over the past 6 months I started on my health store 'guru's' recommendations of daily Red Rice Yeast (a natural statin) and some cholesterol lowering garlic tablets as well as a TBSP of apple cider vinegar in water to start each day....vile! I did my step class at least 3x per week but did not lose any significant amount of weight...but am still working on it...and a recent blood test showed that my cholesterol is now in the normal range. The point being that lifestyle changes, sometimes instead of drugs, can work. I am not for a moment suggesting that you should not be on the medications you are on. Without them I'm sure you would be suffering. What I mean is that making lifestyle changes, can have a big impact on one's health. We have been trained to think that you go to the doctor and you get a prescription. It confirms that you really do have a legitimate illness. But fewer drugs or lower doses of them might be required if we changed our habits e.g. not sitting in front of a computer or TV all evening after dark. Unless the eyes are kept from bright light, the body has trouble making melatonin which aids in a restful night's sleep. This is just one simple lifestyle suggestion to people out there that I have picked up from my health 'guru' who is actually a pharmacist and also a naturopath and who owns two health stores here and is a godsend to our community. If only the doctors were willing to put down their prescription pads and consider, emphasize and advise lifestyle changes...
All the best!
Robin

sidepockets

Posted by @sidepockets, Jul 12, 2012

Hi Robin, I wrote an incredibly lengthy reply and I think it did not post to your response. I hit an incorrect key. Poof, I can't retrieve it back. I will check to see if it shows on the blog tomorrow if not I will re post. If it does post it will have an incomplete ending.. Sorry about this. Just give me a day to see and I will let you know the details as this is important for you and your daughter. I appreciate your information and insight. It all comes down to knowledge is power. Will write tomorrow. Thank you sharing your info with me. Dee

sidepockets

Posted by @sidepockets, Jul 13, 2012

Hi Robin,
To answer the question regarding the titanium fusion. Yes, it really worked. I had crepitus and pain. My neck was actually making a crunching noise when I would turn it. I never really thought much about it I just lived with the pain. I found out this is not a good idea to ignore any bone spurs or spinal cord compression. I did not really want the surgery and put it off and the neurosurgeon found out and called me on the phone. I was told quite directly that is not what I should be doing and don't ever postpone this operation again. This time, I thought it was a mild issue and got yelled at. So, Robin if Kate is having spinal issues they need to be closely watched. I ended up having two surgeries within 3 years. The first surgery was directly performed on the front of my neck. Not so bad except you can have a tendency to choke a lot until you finally heal. The second was for C-4, C-5 compression. This time they went in from the spine. Not so easy as the Sjogrens was rapidly progressing at this point and still no diagnosis. I dried out like a prune after the operation. I understand your concern regarding your daughter's irritability. Yes, dealing with this day in and day out, and if it is not one thing it's another can pretty much put a person in a foul mood. It is a relentless slowly progressive, strange disease. Has she been checked for Sjogrens antibodies yet. The tests are not always positive. I went for years with symptoms and nothing to back up my claims. The responses from my docs were not pretty. It was you are stressed out, you need a vacation. In other words, all in my head. Actually it was all in my joints and bones. But I had a bone scan and the doctor kind of giggled and said, "You have arthritis all over, even in your feet!" When are you going back to your Rheumatologist. Still, no positive results and still strange looks. You can have proof and they still question your motives. I don't know what motives I could have had other than I was eating Advil, Motrin like candy. Yes, the backpacks are killers on our children. They have done many studies on the effects. Please keep in mind that Sjogrens is not always a stand alone disease. It can be primary which means comes with no other autoimmune diseases. Or secondary to lupus, R/A, Hashimoto's Thyroiditis (Hypothyroidism) I have that one too. She should have the Lupus A and B profile done and that also encompasses Sjogrens. The Schirmer's test and lip Biopsy is usually the first place to start. My doctors never started there. Just the same old blood work, with the same results. Your daughter needs to have a full workup done. The earlier they know the less damage is done. Also, some labs are just better than others in detecting certain diseases. I am not sure how it works in Canada but we have all different labs that are available. Possibly you do too. I myself am a skinny wreck. Can barely eat and no my diet is horrible. No appetite and that causes me to not want to cook. I have been cooking lately though and trying organic foods. Will continue........

sidepockets

Posted by @sidepockets, Jul 13, 2012

This is part 2; I got knocked off for being long winded. That is what happens when you move from a big city with throngs of people to the mountains where when you finally see somebody you want to run up and hug them! Lonely up here.
I keep getting knocked off. I write too much. Robin you are absolutely correct in the use of statin drugs. I can't take those drugs. I turn yellow and my liver enzymes become high. They are awful. Yes, anyone truly can do this naturally. I used to laugh when a commercial would come on the television that statins are for those who can't control it with diet and exercise alone. They just did not do the right things, the right way to get their cholesterol and triglycerides under control. I can picture a guy, smoking, eating pizza, drinking and sitting on the sofa saying to his doctor, "But I tried everything you told me to do." Wrong. My cholesterol was through the roof all my life due to the hypothryroidism, and my eating, my lack of exercise, my smoking, my stress level until I made a complete change. It works and I would have thought no, my mom had this, my dad had this. It is just in my genes to have this. Wrong. I was not doing the right things. My cholesterol is through the roof again but I barely eat. But, I don't exercise due to pain, wrong, I eat quick easy to make foods because I feel awful, wrong. So, again, I am back where I started from. I wholeheartedly agree with you. I let myself go and I used to be so physically fit. I did not know that about the melatonin. Very informative. Yes, I think the developed world has become more or less lazy and we think if there is something wrong just pop a pill the doctors will fix it. No wonder they are so nasty. The probably look at us as though we are unwilling to do anything to improve our lifestyle and in most cases they are probably right. I need a health food guru and someone to push me my brother in law has tried since I moved up to the mountains - he lives across the road from me. But since I moved up here the flares have gotten worse and it always seems to be something going on, my daughter, the dogs, the house, my whining, the neighbors, whatever it is can throw me into a tailspin now. I used to be able to handle anything, now if something happens I just fold. I am just not who I used to be. But if I don't make changes it might just end up being who I was. It's good advice and I am doing a little each day to make things better. I hope your daughter can find a resolution to her health problems as it is a terrible way for a young woman to have to live. I know, I lived it since I was 30. A struggle to keep my head above water everyday. Thank you for the advice and tips they are all great. I have to remember these words and live by them. It is time to be proactive and not reactive for a change. Take care of yourself and your daughter,

ronni

Posted by @ronni, Jun 30, 2012

I have so many symptoms I feel like a chronic complainer. I am now getting so many severe symptoms I am very concerned. I do know however, I have been hospitalized for dehydration so severe, I was not talking coherent. Best thing like an instant IV. Zico~~is coconut water out of green coconuts. Very costly but can get a good rate from Amazon. Saves me many times from passing out is the best thing for an instant dose of moisture in my mouth. Better than anything I have had in the way of mouth moisture. I can hardly walk anymore and horrible pain everywhere. Hard to talk and very fatigued. I could be worse though with something else.

sidepockets

Posted by @sidepockets, Jul 10, 2012

The coconut water works? I will have to get some of that too. I definitely am tired of the scalded mouth syndrome coming and going at will and the mouth sores. Been hospitalized for dehydration interesting. I always called this a disease of dehydration. Because of the fact that one day, I became wrinkled and dried up almost overnight and my eyes sunk into the back of my head. Try telling a doctor that one. My skin turned into a pile of (sorry for this) dandruff. I would take my clothes off and it looked like it was snowing. So sorry for being graphic. I really freaked when my hair kept falling out in clumps and this had nothing to do with medicine. It just happened. I had such a thick head of hair and now it's gone. Fine, dry, and well just not normal. I used to pass out too. Is that what it is caused from dehydration? Got to go to Amazon. I'll try the Zico. I will try anything at this point. Sounds promising. Thank you very much. This site has turned out to be a wealth of knowledge for us, I believe. We have to be informed to take care of ourselves and any and all advice from you folks here is greatly appreciated. By the way, I feel like a chronic complainer too. I am just tired of it. Who would want to feel like this? You're right I guess it could be worse.

meredith0903

Posted by @meredith0903, Jul 2, 2012

Wow- thank you everyone for your replies. It is nice to hear from others who understand what i am going through. My rehumatologist ordered an MRI after we discussed my symptoms (forgetting things, confusion, not feeling like I was processing information quite like I used to, numbess in face, hands and feet.) He was concerned about MS but scan showed otherwise. Blood tests came back like always with the positive antibodies and very low vitamin d levels. Am now taking 2000 mg. per day of vit. d.
Work has added to my stress and as a result (my doc thinks), I am more fatigued than usual and my hair is starting to fall out. I didn't realize how bad it was until I saw a photo of myself in the pool with my children . . . the wet hair showed thinning patches. 🙁 My wonderful husband agreed I needed to take time off so I resigned from work and we are trying to make it work on his salary alone. Am hoping this will decrease stress and improve symptoms.

sidepockets

Posted by @sidepockets, Jul 10, 2012

Dear Meredith,
I hope that you just did not resign. Disability????????????????? You are disabled dear. This falls under disability. Review the Sjogrens Syndrome.org website. The S.S. admin has now listed this as a viable disability and there was a great meeting with social security and people or I should say doctors discussing autoimmune diseases. Do you have Lupus, Sjogrens, R/A if you mind me asking? The site had a recorded session from social security and the information was mind boggling. Take care of yourself. Apply for SSDI all they can do is say no.

sidepockets

Posted by @sidepockets, Jul 10, 2012

Sorry, it is the Sjogrens thinking that made me ask what you are diagnosed with. I read your previous post. Duh! Sorry, I can only laugh at myself for not being with it. I do this about 25 times a day. If I don't laugh I will cry so I choose to laugh it off. Please accept my apologies as I thought this was all kinds of disorders relating to autoimmune. The brain fog makes me feel stupid at times.

tammyg

Posted by @tammyg, Aug 21, 2012

Hi, Meredith. I'm so glad I found a resource to visit with others with Sjogren's! I'm 47 and was diagnosed with Sjogren's and Rhematoid Arthritis a year and a half ago, but of course I had dry eyes for years before being diagnosed. I had my tear ducts plugged, taking Restasis, and use Genteal severe eye ointment and Oral Balance mouth gel at night. My eye vision is poor so I have been too scared to take the plaquenil drug, as the rare side effect is blindness. Do you take this drug and have any side effects? I take vitamins and 2000 iu vit day per day. For the last 4 years I have had constipation issues and drink Dr Millers Iaso Tea which greatly helps. Do you have this issue too?

Multiple fingers on both hands have arthritis symptoms and wake me with pain but usually only after I pull weeds in my garden or in general in the winter. I have mild tingling in hands but nothing regular...yet. During winter, I keep a humidifier next to me at all times, but I sitll wake up min 3 times a night for eye drops and 5-6 times for mouth Oral Balance gel or a drink. Just recently, fatigue has been overwhelming where I can't stop thinking about taking a quick nap. And now my face has painful acne fluid-filled sores -- which is nothing like the blackhead/whitehead stuff in my earlier years. Do you or did you have this acne problem? I also noticed that I have memory issues but didn't think it was related to Sjogren's. Perhaps it is. I work full-time (at home) on a computer all day.

The memory, acne, and fatigue symptoms are all happening so fast and regular now, I think I need to see the doctor again and re-evaluate my need for plaquenil. The Advil regimen alone isn't working anymore.

How fast did your symptoms progress from 23 to 38? How are you today? What meds are you taking? So sorry you were diagnosed with this at such a young age. Were you a sickly child?

My parents both chain smoked and I had tonsilitis/strep continually. I don't drink or smoke. I had bronchial and sinus infections alot in my 30's and 40's. I've had the flu twice where I was hospitalized; since taking the flu shot, I haven't gotten this anymore. I also had viral meningitis when I was 29; I think that is what spurred my decline in health. I'm really hoping for NO NEW SYMPTOMS. UGH@~! @meredith0903

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