Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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GammaR 05/20/2010

Is there any chance that my swollen ankles might be another mysterious Sjogren's-associated symptom? This edema started very suddenly about a month ago and is continuing everyday. Mornings are better, but by noon the swelling is very obvious and by evening my ankles "slosh"! I have cut my sodium intake a LOT (have never used much salt and am aware that it is in prepared foods, etc.). My endocrinologist tells me the circulation in my legs is excellent. I have no shortness of breath, coughing, etc. hopefully ruling out congestive heart failure. I am a Type II diabetic and have fairly well controlled blood sugar. My blood pressure is very well controlled with Exforge.....it has been "normal" for over a year.
I have only very mild discomfort from the swelling, however my lower legs have always been very tender to the touch...and I've had cellulitis in that area before. Hope someone has an idea. I will see a doctor very soon, but I'm not even sure which doc to see. Rheumy? Endocrinologist? GP ?.

SamUL 05/21/2010

I'm having this same problem. My right foot, ankle, and some of my lower leg is affected. You might want to read my post about it titled "Foot Swelling". The last post date is 05/09/10. You can find it by clicking on "View All" on the top line "Recent Discussions".
I have yet to get any definite answers from my doctors. Please let me know if you find out anything.

deleted_user 05/21/2010

My mother in law has painful swollen ankles and is having problems walking. They did an MRI and found spinal stenosis. A small pocket at the base of the spine... not SjS related but that's what her diagnosis was...

Tom59 05/21/2010

Spinal stenosis is narrowing of the nueral pathway. That means in laymans terms the nerve doesn't have enough room to move. So it gets irritated.
Depending where on the spine would depend where it affects you.

They can fix that with opening it up- ask me how I know. They do MRI's with dye contrast to see that.

Hope it has nothing to do with SjS or stenosis. One they can't fix the other is a awful surgery to fix.

GammaR 05/21/2010

I definitely am not voting for the spinal stenosis idea! There is a minimal amount of pain and just the swelling has me concerned. I WILL read your May 9 post, SamUL. Thanks....and let's keep looking for answers. Hope your M in L is doing ok, tossie!

deleted_user 05/26/2010

I had problems with some ankle swelling and was put on a diuretic for awhile which seemed to take care of it at the time. That was a long time ago. I am still on a diuretic but now it is for blood pressure control. More recently I had some swelling in my left lower leg and do have some varicose veins so I went to a vein clinic where they did an ultra sound and said I had some veneous insufficiency. I now wear prescription compression knee highs every day. No more swelling. They do take some getting used to but they do help. This may not be SS related, but I would have it checked.

GammaR 05/26/2010

Whteja, thanks so much for responding. My problem has not changed at all. Your advice is well-taken and I'll report in again if/when I get some answers. In the meantime, my ankles continue to ":slosh" as I search for the reason for this. It just seems so strange that it came so suddenly and has not let up or lessened for about a month now. I'll definitelhy be seeing a doctor real soon.
By the way, I don't have vericose veins (one malady that I"ve avoided!!), but that sure sounds like "the culprit" in your case. Keep those sexy knee sox on! Good luck and thanks again.

SamUL 05/26/2010

I had the ultrasound done and it was normal. So I still don't have any definite answers. Recently I have noticed that the swelling seems to coincide with when I'm not feeling well. I've noticed that my foot is always swollen when my Sjogren's symptoms are worse or when I have a virus. But who knows .....

GammaR 05/26/2010

How interesting you mentioned tha, SamUL. I've just been wondering if it has anything to do with my stopping Plaquenil about a month ago....that's about the same time the swelling started. Sounds rather remote, but if you're like I am, you're ALWAYS looking for pieces of this puzzle. By the way, I'going back ON Plaquenil next week. Now that I"ve been off, I an see how it DID help. Sometimes we don't know what helps until we no longer have/use it! The big "downer" is that now I"ll have to go through the long waiting period before the Plaquenil kicks in again!

deleted_user 06/03/2010

Also, sjs causes non destructive arthritis and can cause swelling also. It is still arthritis and swelling is part of that. However, if you are really sloshing it could be heart related and I would check it out asap.

GammaR-You are so right-nothin sexier than these compression hose!!!!

deleted_user 07/05/2010

Some drugs can increase your risk of edema because of the sodium content. I'll allergic to anything with corn, which means most pain meds except Celebrex. It's loaded with sodium, so I have to push fluids to avoid becoming the Pillsbury Dough Boy from edema!

I would ask your doctor about this at your next visit. It might be as simple as changing one of your meds, or increasing fluids to flush out the sodium.

Good luck!

GammaR 07/05/2010

Hi, DryRDH, Thanks for the suggestion. My endocrinologist took me off one of my diabetes meds for 3 weeks to see if that made any differnce in the edema.....it is a med that does have that side-effect. But.....no changes at all, so I'm back on it again and my bolood sugar is better. Edema has not changed at all. I have no discomfort with it and there is no swelling in my fingers, hands, etc. I've been back on Plaqunil for 6 weeks now and already am feeling SO much better.
My doctor ordered an echocardiogram to rule out heart involvement. It may be just an "old age issue" that I'll have to get used to. I've cut my sodium consumption down, but need to cut it further!

deleted_user 08/06/2010

I had similar swelling and my rheumy started me on Imuran and it has helped quite a bit. Good luck!

deleted_user 11/14/2010

I just saw my rheumy and he says that swollen ankles can also be a sign of plantar faciitis. Who knew? I'm going to work on finding some arch supports for my shoes to reduce the cause of the problem.

deleted_user 11/14/2010

My ankles are swelling, too. However, doc says it's due to the prednisone. I'll keep a watch and see if it goes down as they lower my doses.

I will be reading this thread. I hope you get some relief - soon.

deleted_user 09/04/2012

I have Sjogren's not formally diagnosed; it was borderline on the Schirmer and didn't do biopsy. However blood tests indicated I had the antibody marker. Doc didn't put it in the record to spare me hike in insurance costs or denial of insurance.
But I know I have SS. Dry mouth, eyes, nose, skin. Painful intercourse, some arthritis joint stiffness symptoms when I am run down or have a cold.

Lately with the heat I also have swelling in ankles/feet and now knees. also very thirsty, but I'm also dealing with an oral thrush infection and taking lozenges for that.
Have never taken any meds for SS other than Restasis and Advil......... no cortosteroids or other immuno suppressant drugs.

Oddly, my husband recently got diagnosed w/Wegner's Granulomatosis, a very rare type of vasculitis --- auto-immune disease.

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