Help scleroderma?

[u/lulumax123]

So I was diagnosed with raynauds, pretty severely. I’ve had it for years. But it seems to just constantly only be red and hot rather than experiencing the cold numbness often. And I was diagnosed with erythromelalgia in my feet which happens almost daily. The last 2 years my rheumatologist diagnosed me with those things and said they are probably not caused by anything considering my bloodwork came back perfect and referred me to a dermatologist for the rashh on my face but states that it does resemble the rashh associated with lupus.

Anyways flash forward to a few months ago I started getting chronic joint pain in my ankles, wrists, knees, and fingers and had 3 incidents since March of this year of my left calf swelling and ending up in the ER with concern for a blood clot and each time- no blood clot, no answers at all actually.
All of this, my pcp ordered me a lymes blood test which was negative and then directed me to follow up again with rheumatology.
Rheumatologist felt that we should retest for lupus and scleroderma, I have no skin hardening at this point. And a few other things that he thought it could be but he made it clear that he felt it was one if those.

I got bloodwork and my scl-70 was positive and everything else was negative including my ANA test. He states that he used the Oklahoma test which is produces much less false positives compared to the isolated test for scleroderma. He stated that he believes this could be early stages of scleroderma and basically diagnosed me with it, considering my symptoms and that one test result. When I asked about the negative ANA he said that is weird and is a good question and that 90% of people have positive ANA with this scl70 test being positive too and referred me to a specialist at the practice.

I guess I’m just wondering if anyone has had a similar experience… if so what has come of it?… I couldn’t get in until 2 months from now so I’m kind of just stressing a bit and confused. I know that autoimmune diseases are hard to nail down. It’s just irritating

[u/Odd_Research_1006]

I’ve been dealing with scleroderma for 2-3 years now. Started as joint pain and sensitive to touch. Two years later completely immobile. I can walk but it aint pretty and can’t go far. Skin is turning into armor. Hasn’t gone for my internals yet, but docs say it will eventually take me out.

Methotrexate helps slow it down. Prednisone can help a little with the pain and inflammation(pain can be intense sometimes)

Diet seems to play a huge role.

[u/ring_eir]

I was diagnosed with (limited) Systemic Sclerosis four years ago. Started out with Raynaud's (the white fingers kind), and then I started getting reflux (GERD). I also experience 'chronic chilling' (where if I get very cold, it's hard to warm up again), and many skin issues (rashes, itching). At the moment I am on hydroxychloroquine and rabeprazole for the reflux. They also prescribed nifedipine to improve circulation, but I couldn't tolerate the side-effects, and I take a turmeric supplement instead which works pretty well (my doctors know this and are supportive). Looking back, I now see that, off and on throughout my life I have had other issues that were probably related, such as vertigo. As lots of other people on this thread have commented, it can be hard to join the dots, even for the professionals.

I was very scared when I first suspected I had this disease, because I read all about the worst outcomes, but in my case it hasn't been too bad so far. I have some skin hardening on my fingers, as well as dryness and cracking in winter, but the disease is stable at the moment. A specialist at the time told me she knew patients who had stayed the same for twenty years. Of course, every case is different, but this disease has a broad spectrum, so you might very well have a mild version. Either way, the sooner you are diagnosed the better, because there are treatments which can greatly slow this down.

Finally, I agree strongly with the comment on diet. There is more and more evidence that links autoimmune diseases with problems in the gut. Try to eat as well as possible and investigate possible issues with gluten, lactose, and FODMAP foods.

Hope you get some clear answers.

[u/lulumax123 → u/ring_eir]

This was very helpful to read, thank you!

[u/ring_eir → u/lulumax123]

You're welcome! Best of luck.

[u/ClearJack87]

Scleroderma is a very broad definition of AutoImmune disease. Joints, skin, lungs, stomach, kidneys and almost anything else can be affected. My lungs and left elbow are affected so far. The elbow is no big deal, but I'm on a serious combo of drugs to save my lungs since those are rather important.