Swollen hands was one of my first and most distressing symptoms 20 years ago, which led to my DM diagnosis. Prednisone took care of that. But then other symptoms surfaced, possibly due to the use of Prednisone. Soon I was told I had Scleroderma, PM, Lupus, and finally Mixed Connective Tissue disease. Everyone's case is different, so I'm not suggesting my pattern is typical. I'm glad you joined our group and think you will benefit from and enjoy our interactions. Wish you the best.

Hey welcome to the DM/PM group! I am beginning my second year with DM and my hands are just now beginning to swell. You will notice that DM is a collagen vascular disease. This means you will not only have your hands swell, but inflammation in your entire body is part of the fun. My veins swell big too. Some of us get thrombocytopenia purpura which is blood clotting weird so that the clots dam up the arteries and burst producing an anurysm. I am now dealing with what may be a kidney problem. You will find that frequent infections that come out of nowhere are also part of this disease. Make sure you get a good set of doctors that know what they are doing. Good Luck.

Hi, JillG325, and welcome to this website of wonderful and knowledgeable people. I trust we will be an encouragement to you. Although I have PM, I thought I would mention that, yes, I have swollen hands since my PM started, along with swollen wrists and knees. As PluggingOn mentioned, our DM/PM paths may differ; but there are always people here with the same symptoms. Again, welcome, and best wishes to you.

Oh yes indeed, I have DM and swollen hands. They were much worse when I was really sick. When I wake up in the morning the first thing I do is make a fist and see what kind of a day it's going to be, if it's painful and swollen it's not so great, if it's not so bad I am grateful. They do seem to get better the longer I am in treatment. I do a lot of things with my hands and I do see a relationship with overactivity and swelling. I plunge them in ice water when they feel really bad. So yes, I do think it is part of DM. I think my whole body swells up but I notice it in my hands the most.
Maruska

my fingers/ hands are short and stumpy any ways, but when they get swollen from dm i really feel like they are overstuffed little suasages or something like that

Yep, I too get swollen hands sometimes with DM. My joints also ache a lot in my hands and fingers. Like others, this has gotten better with treatment but I still have some days that are worse than others.

My hands swelled and so did my feet/ankles. My doc put me on Plaquenil and that seemed to help with at least my hands. I had had to have my ring removed in a jewelry store due to the swelling, and I can at least wear it again now. Everybody is different, I have certainly found that out!.

Thanks for the replies. I really appreciate the information. While I know that everyone's case is different, it is very helpful to hear about what others have gone through (are going through).

My primary care doctor is convinced it's DM, but my rheum. sent me back to my dermatologist, and for more lab work. Today at the dermatologist's they did a skin biopsy. I'm hopeful that will provide some more information. It should, right? Along with my Reynauds, they are saying it could be DM, CREST, Lupus, sjogrens, mixed connective tissue (I've been told that one for years) or something else. Gosh, it seems I'm no closer to an answer!

I don't see the rheum. again for a couple months. Very frustrating. Thanks again.

Hello everyone,

I was diagnosed with syringomyelia about 3 years ago. About 8 months ago, my hands and wrists became swollen, I notice every once and a while my knees are swollen. My neurologist just ordered a solumedrol infusion for the swelling and pain in my hands, and he put down as the reason being myositis. He didn't discuss this with me, it was just on the order form. I am so confused. Do any of you experience symptoms of any other intercurrent disease, or is this a primary diagnosis?

Thanks, Beck

Yes - in fact I get swollen hands (palms) and fingers (usually the bottom 'finger pad' but also sometimes around the whole finger, always towards the end). This comes with numbness and temperature fluctuations, though usually when swollen it's also hot. I actually had problems with this symptom, diagnosed as 'bad eczema' for about a year before being diagnosed with DM. One episode got so bad they were convinced it was from a MRSA infection...long story, but that summer I got an LR rash along my arms, fingers and face with some papules and they took a biopsy, were able to confirm an AI process. Weren't sure, based on the findings, if it was subacute cutaneous lupus or DM. visual pattern fits DM though, so that's where I got the diagnosis.

My swelling usually subsides with a few days of prednisone (lower dose, as in under 20mg). I don't find the topicals hugely helpful but they are still better than nothing (i use a high potency topical steroid plus protopic).

I found the swelling to be similar in feeling to angio edema, if you ever had a severe allergic reaction you may know what I'm talking about.

Yes! I woke up with swollen hands and went to the Dr - and after going several times for various complaints (muscles burning, hard to breathe, rash on fingers) it took the swelling for them to finally run the correct bloodwork which led me to a Rhemy with a diagnosis of Poly. I never got an explanation of what that was or why, but I too was put on prednisone which took ALL pain away....but resulted in Puffiness and weight gain. I will say that I went on many supplements and was able to wean off of prednisone in August. Rhemy says my Poly is on its way out....Stay on this board, everyone is extremely helpful and is the greatest support group!!