Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I have had Sjogrens for a number of years. Also PsA. I use Biotene gel, Restasis, and fluoride toothpaste per my Dentist. Also sugar free candy. My hearing has been affected. One ear is worse than the other, so I am going for a scan. I have cataracts in both eyes which are now up for surgery. Appt next week for a Consult. Can’t say I’ve noticed a change in smell – yet, anyway! I am taking Cimzia but it’s not helping very well. Have been on Enbrel and Remicade up to now. Enbrel is too expensive and Remicade wasn’t effective. Well, we do what we can!

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@melperez1223, I was diagnosed with Primary Sjogren’s 5 years ago but the dry eyes, mouth, and skin existed for 10-15 years prior. The fatigue and pain are progressively worse. My sense of smell comes and goes. I had to get hearing aids 3 years ago. I have Hashimotos, Restless Leg, Osteoarthritis, Gerd, Diverticulitis, Osteoporosis, trouble sleeping, etc. I’ve had my Esophagus dilated twice, due to trouble swallowing. I also get chest pains, but other than an irregular heartbeat (which is under control by meds), my heart is fine. I take Pantaprozole for the Gerd, which seems to be the cause of heart pains. I’m on Plaquenil, Methotrexate, subscribed Xiidra eyedrops (waiting for insurance approval), and OTC meds for Sjogren’s, in addition to several other medications for other things. I had to quit work 1 1/2 years ago, so I filed for SSDI, which I just received! Hallelujah! I’m sure that’s more than you asked for, but I wasn’t sure what you were looking for. I’ll try to answer questions if I can. Also, on the foundation website, there is a new support network smart patients, and several on Facebook, which have really been a help to me.

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@rosemarya

Hello, @melperez1223. I would like to welcome to Mayo Connect. I am sorry that you are experiencing these issues. I believe that you will receive some responses from others here on this Sjrogren’s Syndrome discussion. Thru questions and sharing of our personal experiences, we are able to both offer/receive answers and support.
While you are waiting for a reply, I want to provide a couple of links.

Mayo Clinic Sjogren’s syndrome – http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren’s Syndrome Foundation – https://www.sjogrens.org/

I wish for you to find a resolution.
Rosemary

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Thank you, @rosemarya. I appreciate the support and follow up!

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@kanaazpereira

I’d like to add my welcome too, @melperez1223,

While we wait for @blindeyepug @meemer @kyjeanne @uncbball @ccorrconro @graveltruck @marylou705, and others to join in, I want to let you know that we have a great, ongoing discussion in the Brain & Nervous system group, “Anyone here dealing with peripheral neuropathy?” http://mayocl.in/2ofBrlS. I would sincerely encourage you to go through it, post your message there, if you wish, and feel free to tag members.

Another discussion that might interest you is “Autonomic Neuropathy – Looking to talk with others,” http://mayocl.in/2nvag8a, where you’ll meet @bobsconnect @kathyzendner and @mojoearle.

@melperez1223, besides medication, how else are you coping with your symptoms?

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@kanaazpereira, these are great suggestions, thank you! I’ll check them out now………

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@marylou705, I’m sorry to hear about the impact to your ears and eyes. I have never tried any of the biologics, but am open to them as a treatment option instead of the methotrexate. I’ll be curious to hear about the results from your consultation and wish you all the best. Dry eyes was not a concern of mine when seeking a diagnosis at all. Apparently, they are very, very dry, but I had gotten used to them and was more bothered by joint pain and dizziness. What were the issues with your ears? Did you have ringing and fullness in your ears as a symptom?

REPLY
@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@kyjeanne, I’m using Xiidra and they work well, but I almost have too much moisture now. Better than the alternative I suppose. I’m sorry to hear that the fatigue and pain are getting worse for you. Where is the majority of your pain? It sounds like we have a great deal in common regarding symptoms. I am 48 years old and not working right now, but have not applied for disability or SSDI. I’m hopeful that I can find some sort of relief and go back to work, I really love staying active. At this point, I can’t function well and I simply can’t imagine that it’s all Sjogren’s related. Do you have any neuropathy?

REPLY
@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

Jump to this post

@melperez, I haven’t been diagnosed with neuropathy yet, but I wouldn’t be surprised. My one foot is pins and needles at this moment. Also, I have carpal tunnel, so I’m not sure if some of the numbness may be neuropathy. As far as my pain, my knees, behind my knees (bakers cysts), my ankle, one leg, and lately my back have been the worst places for pain. I also have Fibromyalgia, Bursitis, and Osteoarthritis, so I think a lot of pain stems from those, rather than Sjogren’s.

REPLY
@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

Jump to this post

I had severe wrist pain and initally my reg dr thought possible carpel tunnel and I said I didn’t think so as I’d been typing on a computer for my job for almost 18 yrs, why would it show up now? So went with my gut of arthritis and when RA dr said I did not have rheumatoid arthritis but had sjogren’s and it was a shock to me. Currently I do not have pain in my hands/wrist, but also on plaquinell and down to 15mg of predisone (to relieve interstitial lung disease caused by sjogren’s). I also have a lot of eczema type spots flaring up on my hands and arms and thighs right now that I put vanicream on and after a couple of days subsides. Sorry I got off topic. I need to go back and read this forum from the start as I have lots of questions about sjogren’s.

REPLY
@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

Jump to this post

So interesting. I had wrist pain, joint pain in my hands and the Dr. said it was probably carpel tunnel. Blood tests showed Sjogren’s which was a total surprise to me as well. I have some sort of eczema type of spots forming on my hands, forearms and lower legs. They almost feel like plaques if that makes sense? I was allergic to Plaquenill, so tried Imuran for 2 years and towards the end of that 2 years, my symptoms really were out of control. I’m on Methotrexate, but so far it’s not helping.

REPLY
@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

Jump to this post

@kyjeanne, thank you for sharing. Isn’t it frustrating to try and determine what is Sjogren’s and what is secondary? Are you checking into the possibility of neuropathy? My Neurologist did nerve tests and they came out normal, but the punch biopsies were all positive. You may need to have additional testing.

REPLY

I have had Sjogren’s for a number of years, also. I additionally have RA, fibro, restless leg, spinal stenosis and osteoarthritis. My first diagnosis was with fibromyalgia about 15 years ago. Two years after that, diagnosed with RA, a year later came the Sjogren’s diagnosis, and just about two years ago was the spinal stenosis and osteoarthritis. My Sjogren’s was diagnosed from a lip biopsy. I was on Imbrel for about 5 years and it worked really well until I started to get MS symptoms. Six months after stopping the Imbrel, the MS symptoms disappeared. I was on plaqunil for about 5 years until I started having eye problems (used to have to go to eye doctor every six months and they noticed I started to get retina “puckering” which they could not rule out was caused by the plaqunil, so I stopped taking it). I am currently on Cevimeline (30 mg twice daily), Cymbalta (30 mg twice daily) and Trazadone (50 mg once daily for sleep). I also occasionally use Voltaren Gel on some of my joints when they are really, really bad – but that is not even once a week. I do have daily pain. I also have a daily low grade fever (100 to 101) which started the last three months. Go to doctor this Thursday to figure out what that is about. Oddly enough, I have bad thumb and wrist pain as well and they thought I had carpel tunnel, but I don’t. My nerve tests also came back “normal” but I did not have any punch hole skin tests. Perhaps I should mention something. They (being my regular doctor, my rheumatologist and neurologist) can’t seem to figure out why I have the pain I have in my legs, feet, hands and arms. The joint pain is accounted for, but the nerve pain is not. I also have occasional chest pain and was told it was the connective tissue between ribs that gets inflamed and causes the pain. I perhaps twice a year take a pain pill for pain if it gets just too bad for me to get relief any other way. I have a thermapedic mattress (which I HIGHLY recommend), try to walk or swim daily, take whirlpool baths and try to get massages as often as I can (I’d get them twice weekly if it weren’t so darn expensive – as it is, I get them once or twice a month). I also try to practice thankfulness and be as social as I am able. I still work part time (I am very thankful for that – have had same job for 38 years now and still have 10 years to go before I can collect SS retirement income. I could most likely qualify for SSDI and may have to apply one day, but am glad I can still work part time for now.) I also care for my mother who has Chron’s and Alzheimer’s. I am blessed that my husband is helpful and, for the most part, understanding. I do feel guilty at times that I am a burden. I try to do as much as I can on my own. He does most of the laundry and cooking, though. And he still works full time. But I count my blessings as I know it could be much, much worse. I pray daily for those in chronic pain and with chronic conditions or other health battles. People are correct when they say if you have your health, you pretty much have everything. I never knew before so much in life depends on good health! When I was younger, I was extremely athletic and much thinner. I never smoked or did any illegal drugs and drank rarely on social occasions only. I exercised daily and was into extreme sports. Then I hit my late 30’s to early 40’s and BAM – all the autoimmune stuff started and kicked my butt. I fight back and feel I do okay. But it is very hard, especially in the beginning, for family and friends to understand. Heck, it was extremely depressing for me for several years. I just couldn’t wrap my head around it. Things are much better now that I have accepted it is what it is and I pace myself and do what I can to avoid any “flares” of any of my issues. Right now I am trying to drop some pounds. I have gained about 40 pounds since my ordeal began. It has just slowly crept up on me. It is hard, however, and I worry sometimes about my husband loosing interest because I’ve gotten too fat! After all, what I am now certainly isn’t what he married. I know I shouldn’t be so hard on myself, but I could eat better. I just tend to eat when I am stressed or having a bad day. Oh well, I don’t want to complain. The majority of the days I feel pretty good. I cope pretty well and know I am very blessed. I have wonderful children and fantastic grand kids. I have three wonderful sisters and good friends. My faith is strong, which I believe is what gives me the strength to keep putting one foot in front of the other and not “give in” to my issues. Sure, I have my “lost days” when I spend a day or two totally in bed because I just can’t do any more, but I make myself get up and get going because I know “motion is lotion” and too much “rest is rust”. I am also grateful for this forum. I don’t get on as much as I would like, life seems busy that way, but I do feel a sense of camaraderie when I do get a chance to log in. I know my fight is not being fought alone. God bless all of you!

REPLY
@blindeyepug

I have had Sjogren’s for a number of years, also. I additionally have RA, fibro, restless leg, spinal stenosis and osteoarthritis. My first diagnosis was with fibromyalgia about 15 years ago. Two years after that, diagnosed with RA, a year later came the Sjogren’s diagnosis, and just about two years ago was the spinal stenosis and osteoarthritis. My Sjogren’s was diagnosed from a lip biopsy. I was on Imbrel for about 5 years and it worked really well until I started to get MS symptoms. Six months after stopping the Imbrel, the MS symptoms disappeared. I was on plaqunil for about 5 years until I started having eye problems (used to have to go to eye doctor every six months and they noticed I started to get retina “puckering” which they could not rule out was caused by the plaqunil, so I stopped taking it). I am currently on Cevimeline (30 mg twice daily), Cymbalta (30 mg twice daily) and Trazadone (50 mg once daily for sleep). I also occasionally use Voltaren Gel on some of my joints when they are really, really bad – but that is not even once a week. I do have daily pain. I also have a daily low grade fever (100 to 101) which started the last three months. Go to doctor this Thursday to figure out what that is about. Oddly enough, I have bad thumb and wrist pain as well and they thought I had carpel tunnel, but I don’t. My nerve tests also came back “normal” but I did not have any punch hole skin tests. Perhaps I should mention something. They (being my regular doctor, my rheumatologist and neurologist) can’t seem to figure out why I have the pain I have in my legs, feet, hands and arms. The joint pain is accounted for, but the nerve pain is not. I also have occasional chest pain and was told it was the connective tissue between ribs that gets inflamed and causes the pain. I perhaps twice a year take a pain pill for pain if it gets just too bad for me to get relief any other way. I have a thermapedic mattress (which I HIGHLY recommend), try to walk or swim daily, take whirlpool baths and try to get massages as often as I can (I’d get them twice weekly if it weren’t so darn expensive – as it is, I get them once or twice a month). I also try to practice thankfulness and be as social as I am able. I still work part time (I am very thankful for that – have had same job for 38 years now and still have 10 years to go before I can collect SS retirement income. I could most likely qualify for SSDI and may have to apply one day, but am glad I can still work part time for now.) I also care for my mother who has Chron’s and Alzheimer’s. I am blessed that my husband is helpful and, for the most part, understanding. I do feel guilty at times that I am a burden. I try to do as much as I can on my own. He does most of the laundry and cooking, though. And he still works full time. But I count my blessings as I know it could be much, much worse. I pray daily for those in chronic pain and with chronic conditions or other health battles. People are correct when they say if you have your health, you pretty much have everything. I never knew before so much in life depends on good health! When I was younger, I was extremely athletic and much thinner. I never smoked or did any illegal drugs and drank rarely on social occasions only. I exercised daily and was into extreme sports. Then I hit my late 30’s to early 40’s and BAM – all the autoimmune stuff started and kicked my butt. I fight back and feel I do okay. But it is very hard, especially in the beginning, for family and friends to understand. Heck, it was extremely depressing for me for several years. I just couldn’t wrap my head around it. Things are much better now that I have accepted it is what it is and I pace myself and do what I can to avoid any “flares” of any of my issues. Right now I am trying to drop some pounds. I have gained about 40 pounds since my ordeal began. It has just slowly crept up on me. It is hard, however, and I worry sometimes about my husband loosing interest because I’ve gotten too fat! After all, what I am now certainly isn’t what he married. I know I shouldn’t be so hard on myself, but I could eat better. I just tend to eat when I am stressed or having a bad day. Oh well, I don’t want to complain. The majority of the days I feel pretty good. I cope pretty well and know I am very blessed. I have wonderful children and fantastic grand kids. I have three wonderful sisters and good friends. My faith is strong, which I believe is what gives me the strength to keep putting one foot in front of the other and not “give in” to my issues. Sure, I have my “lost days” when I spend a day or two totally in bed because I just can’t do any more, but I make myself get up and get going because I know “motion is lotion” and too much “rest is rust”. I am also grateful for this forum. I don’t get on as much as I would like, life seems busy that way, but I do feel a sense of camaraderie when I do get a chance to log in. I know my fight is not being fought alone. God bless all of you!

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I’d be interested to know if your drs find out what is causing your fevers. I’ve had daily fevers of unknown origin for over 2 years now. If I don’t take a tylenol or aleve when it gets around 101, it’ll keep going up till I take something. Last summer one day was the highest at 103.5 I think it got. The last 3 months I have had days where I don’t have fevers. But not 100% sure as to what the difference is other than in january I started taking 2000mg of mycophenolate/ day for restrictive lung disease. Would love a path to follow that might get rid of the fevers for good.

REPLY
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