MEDICATIONS

[Oztrax]

There doesnt seem to be any "gold treatment" medications for SC or morphea.

Myocephalate seems to be popular and is a T cell inhibitor for the skin disease effects.

With regards to Prednisone what regime and dosages have you people been on ?

I have had 2 weeks (separated by a month) of Prednisone 20 mg which tones down the pain of the morphea lines on my scalp and improves fatigue and eliminates the constant headache.

But I see other medications on these forums as well. have been on 20 mg Leflunemide for a number of years for my Psoriatic arthritis, which may of slowed down the onset of of SC/Morphea over the last year when I first experienced the painful lesions on my scalp.

Also see Hydroxychloroquine used, was initially on this a number of years ago for my PA but it didnt really work. I was alo on salazopyrin before the Leflunemide which worked quite well for the PA for a number of years, also got rid of the skin psoriasis to a certain extent.

Biologics like Ritiximub I see here as well, assume these are monthly invusions.

Also found this drug being developed in Australia:

sclerodermaaustralia.com.au....

[George369]

Hi Oztrax,

I've been taking Prednisone 5mg for the past 18 months, as you say it takes away the pain & tones down fatigue, although 5mg is a low dosage, regardless this has caused a whole lot of side effects including stomach ulcers and myositis, can't stop it, tried stopping for just a few days and inflammation and pain flared up.

I have diffuse scleroderma, rheumatologists initially put me on monthly infusions of cyclophosphamide for 6 months, this stopped the disease from progressing, for which i am very thankfull.

I'm not too keen on Myocephalate, it does nothing for me, just another toxic drug in my stomach.

Many thanks for the link for this new drug Asengeprast from Australia, their work down there seems very promising !!!

[OldTed60]

This is a very helpful post - thanks for the link. I do so wish Scleroderma wasn’t pushed out on its own quite as much. Someone with UCTD on the Lupus UK group was telling me on a post that there’s an international lobby of doctors and patients putting forward a Lupus Spectrum Disorder to cover those with overlaps. My concern about this move is that the term Lupus would mean more research funding for Lupus but quite possibly at the expense of rarer diseases such as those of the Scleroderma and Myositis families.

In my own case Mycophenolate was a bit of a game changer 4-5 years ago - but I had tried all the other DMARDs and failed to tolerate these over the years. My skin involvement is still minimal and I do credit Mycophenolate and Iloprost infusions for this as I couldn’t use my fingers to type or work prior to starting these. However I now have severe dysmotility throughout and suspect the Mycophenolate might be a contributer although this started before I began the MMF and is very typically associated with my own systemic sclerosis antibody. So I’ve just had my first round of Rituximab (as well as Mycophenolate) and am waiting patiently to see if it helps - although not sure how I’ll measure the benefits as my scleroderma gut is always my worst problem. I have weak and wasted leg and arm muscles and struggle to walk up stairs so maybe this is mild myositis - although never officially diagnosed. But Myositis is often part and parcel as my antibody suggests so perhaps I’ll soon be walking up hills and stairs without stopping and abandoning my perching stick as my long term prop?! 🤞🏻

Rituximab is a powerful B-cell inhibitor and is usually administered by infusion once or twice yearly in two infusions, 2 weeks apart. I think it’s a fairly all purpose Biologic rather then a more targeted one for scleroderma but I know it’s licenced for Myositis.

[Juanburr1950]

I do quite well on Hydroxycloroquine 400 mg daily. I have SLE Lupus, Sjogrens Syndrome, Raynard’s Syndrome with mixed connective tissue disease. I know that my medication definitely is helping me stay healthy. I do have to pace myself as for activities. I’m a 74 year old woman but I’m very active. I play golf every week. I drive, grocery shop, pickup grandkids. I’m staying busy! That’s the goal! Don’t give up!!

[Oztrax]

With regards to Hydroxycloroquine , which I assume is Placquenil which I was on many years ago for my PSA. Is this used as a DMARD to suppress the autoimmune effects ? Has it had good results for anyone here ? It was too soft for my PSA when it was severe, but with SCL may work better.

[Oztrax]

I am Type 2 Diabetic, looks like Hydro increases blood sugar levels, would need to use supplemental insulin if I went on this or Prednisone for any length of time. Just finished a 5 day course of Prednisone 20mg and ended up with ulcers on my tongue, its not a drug that you can really use without side effects it seems.

[Oztrax]

Thanks folks for your thoughts, thinking MYCO might be best for my "sabre sign" on my scalp and the other areas there. Doesnt seem to be too many side effects, cant get into a private DERMO till March 2025, so am seeing a skin doctor/GP at the Dermo clinic next friday instead.

[Oztrax]

Completed a 2nd lot of 20 mg/day Prednisone, got rid of the constant headache after 10 mg, but developed "burnt tongue" syndrome and a few mouth ulcers after just 3 days. Tongue got better after a week. Its hard to know if SCLERO caused it or the Prednisone. Anyone else had tongue symptoms, its listed as a sign/symptom in some literature ?