I was wondering if any of you have uncontrollable skin issues. I've always had something called Lichen Planus. I used to be able to use streoid cream and it would clear up quickly for a very long time. UNFORTUNATELY, no more...
I am having such a bad time wit it now! Nothing is working!! I even took a prednisone boost kit. Even that wouldn't work: (
Iam still kinda new to this SS junk. I HATE IT!!! I am always itching like crazy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Does anyone suffer from anything like Lichen Planus. I'm so beyond frustrated!!
Hey Confused…I had to google that. Sounds very frustrating and uncomfortable. I get weird itchy spots, or small rashes that go away fairly quickly- though lately i need a spot of Benadryl on them to ease it up. Are the doctors giving you any ideas what to do with it?
I had to google it too, so here is some info for the group.
My husband has been dealing with skin rash, hives and at times almost hysterical itching for over 2 years, and as yet there is not a diagnosis for it. He has all kinds of salves, creams, ointments, and none work more than a little while. His sister looks like she has been scalded, especially on her legs, so I have a feeling they are autoimmune related, but it's hard to say. None of the Doctors seem to know...
I hope you find some answers here, sorry but I just don't have any.
But worst is urticaria (hives) where I come out in raised spots that itch like crazy (like a mosquito bite) then when scratched they bleed and scar permanently. This is due to monocyte attack of the epidermis due to SS.
I am currently covered in them all over my shoulders upper back and head with a fair collection on my bum.
It is one of the worst effects of the disease after dryness and cystitis for me
This may not be what you need but it works for my patch of itcy dandruff-like scale on the back of my head. It is called Clotrimazole and Betamethasone Dipropionate lotion in a 30 ml. squeeze applicator. In my case, I don't have to use it often....Just once, maybe twice a month. It requires a prescription and your doctor will know more about it.
Assybish, I have been dealing with the exact same things for years. My whole body is scarred. It has flared up again as I mentioned in another discussion. this flare of the itching comes with leg and body twitches. Drives me crazy. I itch constantly but worse in the evening like you.
What did they say it was. Not sure if its a result of SS or lupus or both or something not related.....
assybish said:
I itch all day especially worse in the evening.
Ears itch.
But worst is urticaria (hives) where I come out in raised spots that itch like crazy (like a mosquito bite) then when scratched they bleed and scar permanently. This is due to monocyte attack of the epidermis due to SS.
I am currently covered in them all over my shoulders upper back and head with a fair collection on my bum.
It is one of the worst effects of the disease after dryness and cystitis for me
I had to look this up. It sounds so uncomfortable. Over the last few months I get a mystery rash on my left leg. In the same exact spot with the same exact appearance. I have had two biopsies and no solid conclusion. They believe it is autoimmune related because the creams they gave me did not work but the prednisone did.
I have read that rashes are not uncommon in Sjogren’s patients. I hope you find relief soon.
Cassi440 you also. "No answers, no diagnosis and no conclusion" seems to be the norm with these diseases and doctors!!!... ho hum
Cassi440 said:
I had to look this up. It sounds so uncomfortable. Over the last few months I get a mystery rash on my left leg. In the same exact spot with the same exact appearance. I have had two biopsies and no solid conclusion. They believe it is autoimmune related because the creams they gave me did not work but the prednisone did.
I have read that rashes are not uncommon in Sjogren's patients. I hope you find relief soon.
Thank you everyone for all of your input. I least I don't feel so all alone. This is the 1sttie that I can't control this skin stuff. I'm going to have to ask my doctor about the cream that someone had mentioned. I am just so sick of trying to find a doctor for this and a doctor for that...
My Dermatologist that I've had for decades has advised me to talk to my Rheumy at this point, especially since the meds. are no longer working. I think I might have the exact same thing assybish mentioned. That's EXACTLY what happens to me when I itch....automatic bleed and then ugly scars.
Longer story short...I called my new Rheumy and explained the situation with my dermatologist.ALL I WANT IS A MED THAT WILL STOP THIS ITCHING!! My Rheumy says it's a dermatologist issue. I was then told that I need to make an appointment with my......guessed who...MY DERMATOLOGIST!!! And the doctors tell me that I need to not get anxious...yea, right!
I don't know what Lichen Planus is, but I have had hives since my 20's. I'm now 69. Sometimes I will get what appears to be an insect bite on my torso, with a stinging itch. I scratch till it bleeds, and it lasts for a week. I never associated this with autoimmune, and docs never had an answer for me.
Hi, I have Scleroderma which tightens the skin, and dries it out. I have been on the generic form of Atarax for at least 6 years now. It's the only thing that stops my itching. 25mg, two at a time, every hours as needed. The itching will drive you out of your mind. Have you tried this yet? If not ask your doctor. The form I take is hydroxyzine. Good luck. x
Then you need to demand it. no ifs ands or butts. final answer. its your body, you make the decisions. if they don't listen then find a doctor who will. They shouldn't be refusing you with your problem. Doesn't make sense xx confused said:
Northerngram,
I used to take Atarax 25mg. also. It was wonderful. That's exactly what I asked for today.....and was not listened too.
Northergram you just triggered a memory for me with mention of Atarax. The rash I had a few months ago was terrible. The creams did not help so the md gave me Atarax so I would stop ripping open my skin scratching.
Wow! I did not react well. It left me positively loopy. I took it at night and it was a struggle to get myself to work the next morning. I was disoriented and didn’t realize how bad until I came home and found my front door partially ajar. I was so shocked that I failed to lock the door and wondered if it was me that left it partially open or did someone else attempt to go in. I wasn’t worried too much about an intruder because my 20 lb dog who sounds louder than an alarm system would have scared anyone off. The old rash is back and I am itching like crazy but I won’t use the Atarax still in my drawer. I still wonder how I was at work that day.
it doesn't bother me at all. no side effects, been on it since 07 for the itch. without it I will scratch and cause ulcers, so it works for me. too bad you had such a reaction to it. wow that must have been awful. but nothing else works for me. x
Cassi440 said:
Northergram you just triggered a memory for me with mention of Atarax. The rash I had a few months ago was terrible. The creams did not help so the md gave me Atarax so I would stop ripping open my skin scratching.
Wow! I did not react well. It left me positively loopy. I took it at night and it was a struggle to get myself to work the next morning. I was disoriented and didn't realize how bad until I came home and found my front door partially ajar. I was so shocked that I failed to lock the door and wondered if it was me that left it partially open or did someone else attempt to go in. I wasn't worried too much about an intruder because my 20 lb dog who sounds louder than an alarm system would have scared anyone off. The old rash is back and I am itching like crazy but I won't use the Atarax still in my drawer. I still wonder how I was at work that day.
Atarax (hydroxyzine hydrochloride) is an anti histamine of the oldest type. It causes drowsiness as it is a CNS depressant t is prescribed for anxiety/panic attacks, urticaria and skin itching.
Totally agree. When I was growing up as a child in CT in the 60's, doctors were easy to find. I think that overall now a day, the medical field has become depressed.
Northerngram said:
Then you need to demand it. no ifs ands or butts. final answer. its your body, you make the decisions. if they don't listen then find a doctor who will. They shouldn't be refusing you with your problem. Doesn't make sense xx confused said:
Northerngram,
I used to take Atarax 25mg. also. It was wonderful. That's exactly what I asked for today.....and was not listened too.