Advice on Localized Sclero needed
Posted 12 December 2011 - 12:31 PM
This is my first post here. I was diagnosed with Morphea May 2011 via a biopsy. My dermatologist prescribed a low dose steroid (triamcinolone cream 0.1%)applied topically three times a week. The mauve ring has since disappeared and only a slightly darkened area remains with a shiny center. Since that time I developed numerous other areas of early Morphea (Generalized Morphea) on my upper torso, Lichen Sclerosis around my thighs and knees, and LS&A (vulva too). I have no other symptoms like pain.
In September I went to a well respected university dermatology clinic to have experts review my skin. They decided on the above diagnosis and said my case was very rare with all three skin diseases at once. They wanted to use strong treatment with a potent steroid (clobetasol propionate ointment .05%) applied topically twice daily plus a 200 mg daily dose of Plaquenil.
I have been using the ointment but decided not to take the Plaquenil because at this time I'm not willing to risk retinal damage because my skin might become permanently blotchy. The risks are greater than the disease's consequences at this time. Perhaps if it advances to someplace like my face I might change my mind. After applying the clobetasol for several weeks the Morphea on my upper body has decreased in size, some of it almost gone completely. However, the Lichen Sclerosis slowly advances on my thighs and knee areas following my surface varicose veins, slowly turning the skin white as it follows their path. My LS&A seems stable, not changing other than the itchiness is gone.
Upon the advice of a nutritional counselor I had a stool test for gluten intolerance which came back positive. I have been on a gluten free diet since July. I feel no different (except the Morphea has improved) since being on this diet but learned that for autoimmune diseases it often takes two years before one sees results from eliminating gluten from one's diet. Since I live in an area with a high prevalence for Lyme disease (I get tick bites occasionally) and there is differing opinions on it's association with Morphea here in the US, I was also tested for it, two tests came back negative, one uncertain.
I will be visiting a different prestigious university dermatology clinic next week for my three month check up partly because I wanted to get a second opinion on treatment and hopefully they will have more time than the first clinic I went to for answering questions. While the first university had over $1,200 worth of blood tests done that all came back good, they did not do the test for anticentrome antibodies. I intend to ask for that test to determine if I'm at risk for the Sclero becoming systemic.
My questions to all of you are; What questions do you believe are the most important to ask the doctors since I'm sure time will be very limited? Do you have any suggestions for treatments I should or should not try? Any other advice would be appreciated.
Posted 12 December 2011 - 02:25 PM
Welcome to Sclero Forums! I'm glad you found us. Here is a warm welcoming hug.
I think the most important advice any of us would have is to see a recognized scleroderma expert and then to simply follow their advice. In your case, that would include lichen sclerosus/morphea expert, which is precisely what you are doing. Two thumbs up!
So if I were you, I would go there with an open mind and a few questions. Such as, given your ailments, what do they recommend as the best course of treatment(s)? And what results could you reasonably expect from such treatments?
It's very rare for morphea to overlap with systemic sclerosis, and absent any symptoms of systemic sclerosis it wouldn't/couldn't be diagnosed with a blood test, so if it were me personally, I wouldn't be concerned about that. In other words, it's not like the natural course of morphea is to "progress" to systemic, and only very rarely do they exist together. One exception to that is Amanda, who has both morphea and systemic -- but, she also has no positive scleroderma antibodies, either. So there are exceptions to every rule, but because of that, systemic scleroderma is diagnosed by symptoms, and never by blood tests alone.
As for plaquenil, I was on it for years, myself. As I understand it (only as a patient, I have no medical training at all so verify all of this with a reliable medical source, okay?) It is one of the very best tolerated of the anti-rheumatic medications, with one of the best safety profiles. Having a simple eye exam every six months (or as recommended by your doctor) can detect the very rare eye side effects. How rare is it? My opthalmologist has been practicing for over 40 years and he has yet to see a single case of plaquenil eye involvement. That is not to say that people with plaquenil should skip their eye exams -- it is just to put it in perspective that it is not like 1 out of 3 patients will encounter it. Stopping the med is the measure to take if it does start to occur. Perhaps you'll want to put that back in the treatment possibilities; perhaps not.
As you say the risks always need to be weighed carefully against the potential for improvement and hopefully you may have some more treatment options to consider at the major center. Please keep us updated on how things are going, okay?
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Posted 12 December 2011 - 03:41 PM
Welcome to these forums!
I'm sorry to hear that you've been diagnosed with Morphea and also Lichen Sclerosis. I've found another link for you regarding some treatment options for Lichen Sclerosus which I hope will be of interest to you.
I do hope you get on well with your visit to the dermatology clinic next week and are able to get satisfactory answers to your questions. Do keep posting and let us know how you get on.
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Posted 14 December 2011 - 03:17 PM
Welcome to the forums! I have both systemic and localised scleroderma with no positive blood markers. A few years ago I tried clobetasol propionate ointment on my morphea but it made no difference to it, what it did help with was the inflammation and itching of the skin affected by the systemic scleroderma.
I have been on and off immunosuppressants for 4 years but never tried plaquinil, I did discuss it once but the rheumatologist wanted to speak to cardiology first as I have heart involvement.
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Posted 14 December 2011 - 09:21 PM
You have received good advice from all of the above posters. I have diffuse scleroderma so I can't add anything except that when it comes to medications you and your medical team need to discuss the risks versus benefits. For instance, I have a 21 month old kidney transplant and take some pretty serious drugs to prevent rejection. They cause cancer, anger issues, bone loss, and GI issues, which I am dealing with as they arrive. Right now the cancer has been limited to squamous cell carcinoma (skin cancer) but the reality is without them I would lose the kidney and life on dialysis is difficult as well.
The best advice I've received and can give back is keep copies of all your records, tests, anything you can get your hands on and keep it organized. It is difficult to gather it from different locations and doctors if you need it. And become active on the forum and let us know how you are doing. We can learn from you as you share with us.