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Skin Treatment & Pain Issues

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#1 sadie20


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Posted 10 January 2007 - 03:52 AM

Hello all..I have an upcoming appointment with my rheumatologist to discusss my next course of treatment..I was originally diagnosis with CREST, but shortly thereafter changed to systemic. Although I now beleive I've probably had sclero for at least 3-4y(watermelon stomach, skin hyperpigmentation) I didn't start with REAL problems until Aug-Sept 06. I have skin thickening/tightening issues of both arms, hands, neck, legs. I get really upset when I go to my support group and see the 2 women who have advanced to the point of having almost no use of their hands..very fearful that is where I'm headed. I started on Imuran which started helping immediately, but caused my liver enzymes to quadruple. I then started on Cellcept which didn't really seem to do much(although I had only been on it 7 weeks) and it also caused my enzymes to go even higher. My doctor is out of town until next week, but I'm just wondering what other types of treatment people have received for skin issues???Also, in regard to pain issues, I generally ache all over, but have managed to get by with anti-inflamms which work pretty well..however, the livr doctor has already told me no more anti-inflamms ever for me. What do most of you guys take to function? Thanks.

#2 Claudia-DR


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Posted 10 January 2007 - 05:22 AM

Hi Gwen!

I'm sorry to hear that the sclero is taking such a toll.

I took CellCept for about 5 months to stop the skin tightening. It did help. I had to get labtests done every month, which was a bit of a hassle since I hate needles.

Maybe there are other options for you since your liver doesn't like those meds very much? I know some folks are on IV medications that seem to help.

Whatever you decide to do, I hope you'll start feeling better soon!



#3 Sweet


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Posted 10 January 2007 - 05:33 AM

Hi Sadie,

As you know I already sent you a private message about what works for me. I can really feel your frustration and it breaks my heart. This whole disease process and trying to live with it is tough I know. It can be quite the adjustment. I wanted to give you a link you might feind helpful at this time. Emotional Adjustment

Please know we are all here to support you.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 janey


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Posted 10 January 2007 - 06:26 AM

I'm sorry that you are continuing to have skin thickening even on the medications. I'm surprised the Imuran caused the high liver enzymes because it's used a lot for autoimmune hepatitis to bring the liver enzymes down. There are several different types of immunosuppresants that are used for sclero and as many of us know, it's a matter of finding the one that works for you. Please give th Cellcept time. As Claudia pointed out, it took 5 months for her so your 7 weeks may not be long enough to see results. Many of these meds do take several months to accumulate in our bodies and start the job, so please be patience. Cellcept has proven to be effective for decreasing skin progression.

You mentioned that your diagnosis has changed from CREST to systemic. Do you mean diffuse? CREST is a type of systemic scleroderma, so I'm wondering if due to the spread of the skin tightening that it is actually indicating a different type of systemic. Of course, there are exceptions to everything. I was diagnosed with diffuse but my skin tightening never went past the wrist which defines limited, but because the progression of my disease was so fast and I have lots of organ involvement, it was diagnosed as diffuse. So who knows.

Here's is our section on Scleroderma treatments. It mentions cellcept, Bosentan (that's out due to your liver problems), PVAC, methotrexate and plaquenil. Our newsroom also has an article on a new treatment that has shown beneficial for skin fibrosis. So check that out as well.

Another article that was recently in our newsroom - Drinking Black Tea May sooth Stress caught my eye so I've been experimenting with that. I have to say, I believe it really works. So give it a try. I hope it helps.

Please let us know what your doctor says next week. We're here for you.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 nan


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Posted 10 January 2007 - 08:19 AM

I too have watermelon stomach and I was just diagnosed with CREST. I am surprised that you were taking anti-inflammatories with watermelon stomach. I have been told that I can't take them. I take plaquenil. I didn't realize how much it helped until I went off it for a month. I am so sorry that you are experiencing these problems.

#6 sadie20


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Posted 10 January 2007 - 09:41 AM

Thanks all for the response. What I meant to say was I changed to "diffuse". Although I was somewhat disappointed that the Cellcept didn't appear to be doing much, I was more than willing to continue for awhile, but my liver enzymes quadupled with Cellcept. I went to see a liver specialist as they have been elevated (not horribly)since I was diagnosis. My GI doctor(very sharp) did a liver biopsy a couple of months ago and it was inconclusive. It took 2 months to get in to see the liver specialist & she thinks I probably have Autoimmune Hepatitis..She had me come off the Cellcept for 7 days and my enzymes are almost normal, so I speculate I can't take these immunosuppresive drugs. I guess I am so concerned because although I know my rheumatologist has tons of experience, she seems very passive. When I called her to report the decreased enzymes and asked what the next plan is, she says"Let's just leave you off meds for awhile and see how you do." IS THIS NORMAL? I understand this is a very unpredictable disease, but as a nurse, it is difficult for me to adopt the "wait and see attitude" I attend a support group and two of the women have Sclerodactaly BAD..my skin issues are the worst in my hands and I'm so afraid I will loose the use them. By the way, what is PVAC? I read the medical/newsroom routinely. Thanks.