Scleroderma / Lupus rash

I have a question for all scleroderma fellow posters. I was tested all last summer and fall for lupus with no postive proof. Then come Jan of this year I had my first appointment with a rhuemy doctor that told me I had scleroderma, (CREST). Been treated since. Well I developed a patch of a rash on my left arm which itches and I have had it for about a month and a half, I went to the dermatoligist and he took a look and said, it is a lupus rash, mentioned dermatotois spelled wrong. Prescribed a $80.00 cream for it, and said I could do a blood test but it is going to come bac k ANA postive so he said why? Well, fast forward to a week later and now I have a patch on my left cheek that keeps getting bigger and itches also. It does have a hard skin feeling in the middle of the patch, does this sound like the scleroderma? I have red lines and dots in weird patterns on the same cheek and have for about three years and they are spreading too. Now I think, if the new spot does not go away which is now about the size of a quarter, should I go to the dermatolgist or the rheumy doctor? I just get very confussed about who to go to for what. Also does anybody know of any group or organization who would help with drug costs, I am now putting out around 800.00 per month for my drugs, not including what my husband takes, and then they prescribed a drug for my colitis which is 900.00 a month which I just can not afford to take, is there any help for us that anybody knows of? Sorry so long. Thanks for any help.
Sincerley
Susie

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yes, there is help with drug costs, go to free precription drugs. i know i got my drugs for free before i got my disability. and as far as the spot's i think i would go to the dermatologist, i don't think the rhuemy know's that much about these skin problem's. i am having the same problem lately, i have a line of red bump's on the side of my nose, very close to my eye and it kind of remind's me of what they call the butterfly rash with roseca. i go to my regular dr. next week and i'm going to see what he say's first before i go to the dermatologist. good luck, and let me know what you find out. weepy.

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I have a red rash on my ankles that is spreading upward toward my knees. I t started last fall and is spreading. Docs say it is from SS but little else. Scleroderma.org talks a little about it.

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Weepy, thank you for responding to my post. I am going to go to that web site for prescription help, I am falling so far behind on everything, just trying to pay for my prescriptions, not to mention all the doctor appointments I have had in the past year, so thank you very much again, I do appreciate it. Also I did call the dermatoligist and the rhuemy doctors nurse and I explained to both that I did not know what to do, so the dermatoligists nurse made me an appointment for this tues, and the rhuemy doctors nurse was so nice, and said she under stood my questioning this, but said she thought the doctor would like to see this also. Soooooo I have an appointment with him weds, they worked me in. You know I really do not want to be a hypocontriac about this dx but it is so weird, to not know what is important and what is not.
Sincerely
Susie

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HI Nikki333, Thank you for responding to my post I really appreciate the advice on the web site to visit to check this out. Let me ask you Nikki333 which doctor did you go to for the rash on your ankle? Was it a general or the rhuemy or a dermatoligist? This is where the confussion comes in for me. I know my general would not be the one to go to. I do not believe she has seen a scleroderma patient before me. So thank you so much for the advice.
Sincerley,
Susie

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I first showed my PCP, she told me to ask my SS doctors because she had not a clue. (Love her honesty) Showed my rhuemy and my special SS doctor at Pittsburgh, Dr. Medsger. He did blood tests for a bunch of stuff to make sure it wasn't other bad stuff other than ss. Nothing else came back so it is my ss or sjogren's, take your pick!

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Just had a thought-- Do you have secondary sjogren's or raynauds??? Look on scleroderma.org if you don't know what those are?

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Hi Perfect, i found some other web sites from scleroderma.org. www.benefitscheckup.org www.helpingpatients.org needymeds.com and www.rxassist.org hope all this is helpful. weepy.

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You guys are so great. I am on line right now downloading applications for the drug cost help. The one thing though when I type in my drug lists they do not find some of the more exspensive ones. But I am going to start here thanks again, I so appreciate it.
Susie

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Nikki333, yes I do have raynauds I am on two different meds for that and the sjogrens I am sure I have also just have not been officaialy dx yet. I have to use special toothpast, for dry mouth, I get terriable sores on my tonuge and iside on my gums,sometimes I am so dry I feel I can not swallow, or get my words out of my mouth. I am drinking water all day long, I do not sweat. My skin is dry, my female area is dry, I use a very exspensive cream for this, and my eyes are dry inside and out. I bet your sorry you asked, LOL. Thanks again for all the help. Are either one of you photosensitive?
Susie

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No luckily I am not photo sensitive. I actually go tanning, The UV helps my rashes. From what autoimmune disease, I don't know, take your pick, and does it really matter? Tanning helps I just don't go that often.

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