Dermatomyositis Remedies
My liver enzymes are high and I've been taken off of the medicine I was on and can't get into my doctor until next April.
(Oregon)
03/23/2024
Hi Shell,
Hopefully you get notifications from replies, I know you posted this a while back.
I have been battling dermatomyositis for a while, without realizing it. Finally the constellation of symptoms has made it clear, from the violaceous rash on my face, calcifications in fat layer and back of hand, swollen eyes, fatigue, weakness in trunk and thigh muscles, myalgia, etc. Weirdly enough, also constantly ravenous with huge weight gain, like 100 pounds in the last 6 years. I've had various autoimmune problems my whole life, but this is the current manifestation. I was on LDN, but ran out and due to my current nomadic lifestyle, haven't been able to keep current medical care, so it's just been up to me. Also, I refuse to take corticosteroids or immune suppressants because they will eventually kill you (I understand when it's life or death and people need to, but it's my personal choice because I have found ways to keep it at bay and was doing great for a long time.) So with this current relapse and new symptoms, I've been digging for answers, and here's what I'm finding.
PABA - one thing they used to prescribe (and I understand still sometimes do) for dermatomyositis is Potaba, a form of PABA with potassium attached, not available over the counter. But as I understand, the reason they don't use it much now is because it's badly tolerated in the GI tract. PABA (a little-known B vitamin), on the other hand, is better tolerated, OTC and still works, just not quite as efficiently. I just started taking it a few days ago, and I got IMMEDIATE improvement...rash fading, hugely increased energy, muscles strength, mood and pain levels. I started on 500 mg a day, but today am going to bump up to 1000 (500 mg 2x/day) because I noticed by early evening I was fatigued again, grumpy, appetite back up, etc, and this morning eye swelling and myalgia was back (after 2 days of none! ) I took the first dose in the evening of the first day and the second dose in the morning of the second, and felt great, so I think I just need more. I will keep increasing it incrementally as needed for relief. It's cheap, it's relatively safe (good studies debunked hepotoxicity worries, look them up), has little to no side effects in proper doses, except preventing sunburn safely (when taken internally) and reversing grey hair in some folks!
Depending on how sick you are, you may need to take more. I believe it is given in doses up to 12g, but so your reading and due diligence first. And pay attention to your body's signals... don't take it at all or in large doses is you have liver/kidney issues. It's cleared through the kidneys.
N-acetyl-Glucosamine (NAG) I just came across it today. Apparently it's very helpful for all manner of autoimmune disease, regulating T and B cell activity and lowering cytokine levels, which are major issues in dermatomyositis. Look into it, I'm still reading, which is how I got here today.
Good luck, and I hope you find some relief!
