Top products from r/scleroderma

Ugh, I'm sorry to hear about your mom's trouble with methotrexate (though it makes me glad that I passed on it). When you're not dealing with the systemic form of scleroderma, it's tough to figure out what treatment is right, because it's more about alleviating symptoms, and sometimes the side effects of the medication just aren't worth it. Unfortunately it's a rare disease without much research behind it, so there are not as many options to choose from (that insurance will cover, at least).

For the stretch mark cream, I use Basq Advanced Stretch Mark Butter (Amazon link at the end of this post). For one, because I already had it, but also because the skin of the plaques gets very dry, scaly, and tight, so moisture is key. Something like Mederma is great for helping to repair scar tissue, but it isn't focused on moisturizing the skin. And there's no shame in needing stretch mark cream even when it's not related to pregnancy - not all of us are blessed with skin that is super-elastic =)

The exercise roller I used really helped with releasing some of the tightness of the skin plaques (just search for "muscle roller stick" on Amazon, there are lots of options in the $10-20 range). Depending on the size of your mom's plaques, it might be useful. Mine cover the entire front of my right thigh, and were getting fairly hard -- rolling over it for a minute or two a day softened them up within a week or two. <-- This is totally my own experimentation, it may be a placebo effect. I just decided to try it after my trainer recommended a muscle roller to break up scar tissue from another injury, and when I started researching about manual things like this to "break up scar tissue", it turned out that actually does work for injuries, so I figured "why not?".

I haven't personally tried light therapy -- my insurance wouldn't cover it unless I had already tried the methotrexate, which I wasn't willing to do. How it works, though, is that your mom would have regular (weekly or bi-weekly) short doses (a few minutes at a time) in a light box (which would be focused only on the affected areas, not like a whole chamber) at a doctor's office. The light is specific wavelengths to penetrate to different depths of the skin, and the purpose is to break up / release the collagen bundles that have formed. In theory, this would help to relax the skin, leading to improvements in mobility, as well as reduce pain from the tight skin. It won't help the disease, though, so if your mom's scleroderma / morphea is active, new plaques would likely still form. I'm not sure how effective this would be if she has gashes from it - I'd definitely check with a doctor on that.

Good luck to you & your mom! She's lucky to have you taking such an active interest in her treatment, especially for a disease with such limited understanding.

Stretch mark cream: https://www.amazon.com/Basq-Advanced-Stretch-Mark-Butter/dp/B0037W6PJS

I've never had a foot ulcer, thankfully. Mine have all been digital, but here's what I can offer in the way of advice:

First, he needs to start laying the groundwork for switching to a job that happens indoors. I know that sucks, especially if he's invested a lot of time in learning that job, but it's something that he will almost certainly need to do sooner or later. That may involve heading back to school or other training. I was a locksmith until it got to the point I dreaded going out on calls in the winter, even though that was how I made my living. Luckily, I'm an Army vet with service connected disability and the VA's voc rehab program doesn't really care if those disabilities are the reason why you can't work in your field.

Second, a pound of prevention is blah blah something something. If he smokes he should quit. He should try to get a prescription for a vasodilator or calcium channel blocker. They can help quite a bit. They almost triple the amount of time before vasospasms hit me, to close to 20 minutes in ~45 degree weather. He needs to keep his feet and hands warm and dry. I highly recommend these gloves with the small 6 hour Zippo hand warmers, although many doctors will say to stop wearing gloves entirely and switch to mittens as gloves can restrict blood flow. I can't stand the total loss of dexterity. He's going to need to take similar action for his feet. Keep them warm and don't put things that are tight on them.

Third, the doc may want to see if they'll resolve on their own. Give it a shot, I guess, but I've never had one that did, even after 9 months. I'm sure there's someone, somewhat that has had them go away on their own or else they wouldn't ask, right? Mine have all had to be debrided.

My wife is now giving me the stink eye because dinner. I'll add more later.

OK. Tasty meat loaf. I probably will forget something because I lost my train of thought.

Fourth, are they occurring spontaneously or do they start as a small injury that doesn't heal properly and goes necrotic? If the former, this will only sort of apply, but it it's the latter he needs to protect his extremities. Work gloves whenever there's a chance that he'll cut or puncture his hands and never going barefoot. Even sandals are risky if you stub your toe or something.

Fifth, he'll need regular ANA panels done, at the very least. Autoimmunes are like potato chips: you can't have just one. Some people feel like they're collecting pokemon and have to catch 'em all. I joke, these things rove in packs.

Finally, I'm personally very interested in what kind of environmental exposures he's had. From the peer-reviewed research I've read, scleroderma in males is extremely rare. Some estimates put it as low as 50,000 of us total in the US, going from memory. It seems most have either been exposed to industrial-style solvents or large quantities of silica dust. I've only met two other men with scleroderma have been Operation Iraqi Freedom vets and I am as well.

Anyhow, I hope I could be of some help.

I have scleroderma, reynaud, and lupus. I wear fingerless gloves every day. I can still function and work, but my hands stay warm and compressed. You can find all the colors now!

Duerer Arthritis Compression Gloves for Women and Men -Relieve Joint Disease Symptoms (Osteo/Rheumatoid), Raynauds Disease & Carpal Tunnel(Black, Small) https://www.amazon.com/dp/B077BXJ2PF/ref=cm_sw_r_cp_apa_i_pnpPDbW9END71

Here is the mobile version of your link