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Sjogren's Syndrome

Posted by @terryprod in Bones, Joints & Muscles, Jul 6, 2011

Is anyone suffering from Sjogren's. I was told that a blood test showed I had the
anti-body, and my doctor prescribed hyroxychlorquine to surpress it. He told me it was like a ticking time bomb because pravo virus maybe awakened it??

Tags: womens health

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Posted by @kristinahesby, Jul 7, 2011

Hi there, I am curious how your symptoms began? I was diagnosed earlier this year with inflammatory arthritis and my parvovirus was positive, so they thought the parvo caused the arthritis and it would be gone in a few months(I'm only 25 and was unable to get out of bed independently). However August marks one year of symptoms and I have been worked up by every department with no offical diagnosis. I had read about Sjogren's and am thinking about bring it up to my rheum doc....


Posted by @terryprod, Jul 7, 2011

Stina, sounds like your diagnoses above is the same as mine, did they find a above blood count for antibody for sjorgrens? In Dec 2010, I thought I just had the flu like alot of my teacher co-workers...but
I felt so bad with aching everywhere for three days...felt fatigue for 2-3 weeks and I am usually very active with good health. I had blood test in 2008 with hmo and ana test was positive, but they just let it go saying a lot of people test positive. When I went in jan 2011 to hmo they retested blood and found that i had a above normal count antibody sjogren and I tested positve for human parvo virus which they said probably tiggered disease was referred to rumotologist and he prescribed hydro, has made me very sensitive to sunlight (sunburn easily), brown blotches appear, heatbeat irregular sometimes, bladder seems to want to go more, upset stomach sometimes in morning. In 2008...had aches in arms, felt something was wrong.
Going through premenopause ..starting to skip periods...thought maybe
before this diagnosis at 48 that I was going through change with sweats, emotions , hard time sleeping. Classic systems with me were heart burn/aches
last year...but it disappeared,, alittle dry eyes. Sometimes forgetful.
I am sorry that you have this , sounds like your systoms are pretty severe. I was told I just have inflammatory artrithis. I would like to see if I could not take drugs,
because I am scared of side effects over a long period, but dr. said if I don't supress
I might get worse...hmo sucks......would like to see someone for second opinion in near future. I would definitely ask to be tested for other hmo always looking for saving have to insist..because
they act like you are being a hypocondriac when you feel something wrong
and you know something is happening with your body.


Posted by @kristinahesby, Jul 7, 2011

Wow, you really have been through a lot. I can honestly say though that many of our symptoms sound similar! I was actually on short term disability for the arthritis, but then when I did come back to work, I could only do 4-6 hour shifts because I was so fatigued I could barely drive home. I have not had a antibody drawn for sjorgens, but I am definently going to ask for it at my next appointment. Thank you so much for posting so that we could connect! Have you thought about accupuncture? I have been doing that for about three months, and it has helped my symptoms and lifted my general "mood" My insurance wont cover the cost until I can proove that no medications work, which I will not do because I don't want to try being on a ton of different medication. So it is a little expensive, but worth it in my mind.


Posted by @terryprod, Jul 7, 2011

Let me know what happens on your blood test and stay active ....walk, swim, or
do something because it helps


Posted by @lory, Jul 11, 2011

I am so glad that both Stina and Terryprod are on this site. I am miserable as I sit here typing I'm in so much pain and dreading feeling like this in the morning when I have to go to work. Everything you all mention I've been feeling and going through. I have my pain management dr. appt tomorrow also. I'm on meds but much of the time it's as if I've taken nothing. I'm so stiff and in so......much pain. I had seen my rheumatologist who is about 2 hrs away from my home and she had also found me very vitamin D deficient she said I was the most deficient she had ever seen and didn't even know how I was still functioning. I was on the Vitamin D but only for about 9 weeks. I really want to go see her again but hadn't had a way because my car broke down and I didn't have the finances to find another way. I do have arthritis in my neck, fibromyalgia, extreme dry mouth and other things but I really think there must be something else going on. Please let me know of anything else that you all have tried and that has helped ease the pain and fatigue. I sincerely thank you. Lory


Posted by @lory, Jul 11, 2011

Belsey I am very glad that you are on here also. Thanks.


Posted by @cbbiven, Sep 2, 2011

cbbiven: did the h stuff work for you? my doctors told me my blood work dint show the antibodies for sjogrens but all the symptoms are here and ive been told its hard to diagnose. we dont have a rheumatologist here. so am going to the eye doctor and an ear nose and throat dr for additional ttests. any advice?


Posted by @belsey, Jul 10, 2011

Stina..hope you get some answers soon. I have been diagnosed with Sjogrens for about a year now. Prior to my diagnosis, I had spent a 7months having 3 surgeries...two of them major. My mouth became so dry I could hear my tongue pull loose from the roof of my mouth. I kept mentioning the dry mouth and severe weakness to my surgeons, but we more or less agreed it was a result of the surgeries and anesthesia and would take some time to recuperate from all I had been through. A friend of mine suggested Sjogrens to me and during my first visit to a rheumatologist(for my fibromyalgia) I mentioned the possibility of Sjogrens to him. He ordered the blood test that day and within 2 months I had been referred to an Oral medicine Specialist, had my lip biopsy, received biopsy results and was diagnosed with Sjogrens. I know a diagnosis isn't always that easy to get, but be proactive. Tell them what you think it may be and request to be tested then. Do research before ypur appointments. Share what you have read/heard. My doctor appreciated my knowledge and encourages me to keep educated about Sjogrens. Since my diagnosis, I have also suggested possible Vitamin D deficiency to my rheumatologist, was tested that day and received a Rx for 100,000 units of Vitamin D in the mail about 10 days later. My deficiency was severe. The Vitamin D seems to have helped my SEVERE weakness more than anything I have been prescribed. I am lucky to have been referred to a rheumatologist who actually takes time to listen and respects my knowledge of how my body feels. Good luck!!


Posted by @nidhi, Jul 11, 2011

Well, over the past two years I've gone from one specialist to another as I had various symptoms bothering me at different times. Dizziness, Palpitations, Dry Eyes & mouth, Skin rashes, IBS, severe fatigue...the list goes on. One after another each specialist would say that there are some symptoms but & don't fall into any disease category.

A rheuma in another country checked my ANA & I tested positive at 1:80 hence low level of Auto-immune activity a year ago. Sjorgen's Syndrome was one possibility that popped-up. The secondary blood tests came negative. So again I was left with no clear diagnosis...very cold feet, hands, fatigue, lower than normal blood pressure especially when I tried to sleep! A colonoscopy showed I had some ulcers in my terminal ileum => either TB or Crohn's.

I decided to convert from full-time to a part-time work arrangement.

Back at home, I was told that all that I have is IBS and along the way my symptoms/flares got closer and more severe until I got admitted recently for severe tenderness in my entire abdomen. A balloon assisted entereoscopy revealed ulcers in my small intestine also. Now it is confirmed that I have Crohn's Colitis. On Pentasa & Budesonide for now. ANA is now 1:640. ESR & CRP keep going high and back to normal levels.

I've decided to continue part-time work to keep my mind positively occupied and relax as well as do more voluntary work to take care of my spirit...looking for positive support from others


Posted by @april43079, Jul 24, 2011

My fiance was diagnosed with Sjogren's back in 2007 at Duke University in Durham, NC after unexplained chronic symptoms of dry mouth, chronic strep throat, fatigue, etc... since childhood. I would be more than happy to discuss this further with you and compare stories and maybe help led you in the right direction. Take care


Posted by @veecee, Oct 6, 2011

I was diagosed around a year ago. I am a 43 year old man and started experiencing lower back pain early in 2010. I went to my md who gave meds for pain sent me for MRI; ended up going to therapy then onto a neurosurgeon; had 3 cortisone injections in as many months, a very painful myelogram at CT scan; all showed only a slight bulge in disk ; nothing really to explain the pain! Then on to a neurologist who said everything looked fine, but did suggest Neurotin for nerve pain; started taking 300mg 3x a day, which helped. All along was still not able to work and was fatigued all the time and having problems with my eyes feeling gritty and occasional dry mouth. My md referred me to a rheumatologist, Thank God!! He was the first specialist I had seen who didn't make me feel this was all in my head! He diagnosed me with sjogrens, I had already been diagonsed with Hashimoto's thyrodidtis and was on synthroid. He put me on Hydroxychlor for the fatigue. I have psorasis on my knees and hands and it flares up when my stress level is high. this has been a learning experience to say the least! I was out of work 6 mos in 2010; but went back in Oct and have been okay until the last few weeks, and things have really flared up; My nerves went haywire and my doc put me on celexa, which is helping; I hadn't even realized depression was also a side effect of sjogrens. My feet feel cold alot of the time now. I have been dieting for 4 mos thru a doctor supervised program and have lost 71 lbs and initally felt better but now seems as tho my sjogrens symptoms have magnified. I see the rheumatologist in a week and hope he can shed some light on this. I haven't been able to work in 3 weeks. Anyone out there know where i'm coming from?? sure could use some input. Thanks.

Posted by Anonymous-49d92f82, Jul 30, 2012

I have Sjogrens, RA, IBS, Herpes 2, Asthma. Head feels like it weighs a ton and kills my shoulders and neck. Scalding sensations on skin and moves in different areas. Skin in vaginal area tears and also on wrists, lips, face. I watch my skin tear open as if I have cut it with a razor. So fatigued can hardly get around for very long at a time. I weigh only 110 was down to 107 and struggle to keep my weight up. Had to have ten crowns done recently at the same time. Teeth started to pull loose from gums. Very dry mouth, nose, and eyes. Dry cough always. Easily depressed and mood swings. Dehydrate quickly. Hospitalized for this before. This has all progressed very quickly. Hard to tell which thing that I have is causing what. I try to still keep my head up and think positive and know it could be even worse. Healthy eating, extreme cleanliness, and less stress with much rest is helpful. Lots of vitamins and 5,000 mgs vit. D everyday for depression works. Thankful for this website and share. 🙂

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