Sjogrens and Skin Problems

[Shelia]

I have Sjogren's and started having scalp irritation and loss of hair the first of May. It is somewhat better and my hair is coming back but still have sore knots on scalp. Just finished a medrol pack yesterday. Woke up this morning with what looks like hives. Am itching really bad all over. Some of the places are 3 and 4 inches long, are raised and look like a bad sunburn. Worse on stomach but they are on my upper thighs, arms and shoulders, neck and face. have been taking Benadryl tablets and using the cream all day. No insurance now since I got my disability in January. Have other conditions but more trouble with Sjogren's. My body has a hard time absorbing potassium even though I take a daily supplement. I have two adenomas on my left adrenal gland. Could this be causing my problem? Help. I am in tears. By the way I am 56.

[Joe S.]

(((Shelia))) Welcome to the forum. It sounds to me like you are having a drug reaction. Please check the med for side effects and interactions. Please contact your Doctor about this.

You may want to read spoon theory to help you understand the ups and downs of this illness.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[Jozee]

Sheila, I agree with Joe. Meds can cause so many different side effects. I wouldn't delay seeing your doctor as soon as possible.

[susanep]

I am still itching with red places, and little bite looking places, and the nurse practitioner said it was scabies.(please don't look up pictures) I am still not any better, and I used the treatment. I am not convinced this is what it is.

susanep 

[mshistory]

Hi Sheila, do the welts appear in some areas for a few hours then calm down while others appear elsewhere on the body? My older daughter is allergic to cephalosporins and broke out in hives from it, and for almost a week, she would break out in hives from head to toe but they would last for a while in one area, then pop up elsewhere, although for the first few days, they were everywhere.

She was treated with doses of Benadryl every four or six hours (I can't remember exactly) for one week. I am allergic to sulfa, and broke out in a flat intensely itchy rash all over my back, arms and chest and my entire face turned bright red. Lovely. That reaction was treated with a cortisone pack.

Anyway, I agree with others that it sounds like an allergic reaction to something you are taking, so please call your prescribing doctor.

Take care,
Sharyn

[lindaneall]

Shelia, I have been having a drug reaction from the Plaquenil, also.  I began 200 mg. of Plaq. the 1st of Feb.  By the end of April, the back of my scalp began itching.  Then a few weeks later my left shoulder erupted in what looks like a rash of mini hives (little tiny itchy bumps).  Last month I tried switching from the name brand to the generic to see if it would make a difference.  Within a few days my other shoulder erupted as well as a spot on my abdomen. The generic made things MUCH worse.  Are you on the brand name or generic?

After 1 week I changed back to the brand name and continue to have problems with my left shoulder and scalp. My husband prescribed triamcinilone Acetonide Cream ( a topical steroid), and this greatly relieves the outbreaks I get on my shoulder. However, the back of my scalp has been much more frustrating.  I use a triamcinilone scalp lotion (water soluble), yet don't like using it after my shower because then the back of my hair looks goopy and doesn't look great if I want to go out.

Dr. Vivino is my doctor at the Univ. of Penn. and is a Sjs expert.  I called his office 3-4 weeks ago to ask what to do. He said I can either discontinue the Plaq. (which I really don't want to do), or try Allegra.  I tried the 24 hr. Allegra a few times, but the dose was apparently too strong for my very thin body.  It didn't seem to help the itching, and I got WAY too dizzy.

Last Thurs. I got the 12 hr. Allegra and tried one of those. Again, it didn't seem to help much, but I need to try it again. Some days are just much better than others, whereas on others I about go stir crazy. The itching has been extremely annoying the last few days:(  I know that I can stop the Plaq. for 2-3 weeks to see if this resolves, yet after being on it for 7 mo., I hate to essentially start all over since it takes 3-6 mo. to achieve a therapeutic level.

I really need to be on the Plaquenil if at all possible since I have a severe systemic case and have gastroparesis.  I was previously tried on Methotrexate injections for 2 weeks, yet had to discontinue due to severe leukopenia.  Unfortunately, this is my 3rd attempt at the Plaquenil. Each time I've had to stop it due to a different intolerable reaction.  It is disheartening that I have developed a drug "allergy" to it this time.

I fly to see Dr. Vivino in a few weeks, so don't know what else he will recommend.  I am just fighting to be able to stay on this because I really feel it is helping suppress this autoimmune disease and gastroparesis.

Please let us know what happens to you and if your itching/hives resolves.  Unfortunately, from the research I did, it is pointless to try to stop and then reintroduce at a lower dose. From what I have gathered, once you exhibit a drug eruption, then it will just happen again:(

[Shelia]

Woke up Saturday morning and left eye was completely swollen together and red. Went to ER. He said SjS was arthritis and that was all he knew about it. The rash had spread and all ran together and looked like a sunburn that was swollen. He gave me a steroid shot and a vistiril shot and the itching stopped within 10 minutes. Today it is much better but not gone. He said it was a reaction to something but I haven't done anything different. My Sjogren's Dr. that I have used for years just retired for health reasons. She has Sjogren's herself and she was wonderful so I don't even have a Dr. now. Thanks for all the help. Shelia

[bthorn]

I had a severe reaction to penicillin that caused hives like this when I was about 5 years old, I am wondering if that was actually the beginning of my sjogrens journey!!!  I had severe muscle and joint pain with that outbreak and my parents had to carry me to the bathroom!  I had noticeable symptoms over the last 3-4 years that finally made me go to the dr. and last summer I was diagnosed with sjogrens and started on plaquenil and mobic daily.  I have had "hive" outbreaks all my life since that first one, dr.s always thought allergies to something, however I never changed anything, wondering if perhaps these hives are also a part of sjogrens???   Even more concerned since my 12 year old had a similar reaction to we don't know what about a year and a half ago, hoping sjogrens isn't hereditary!