Hi, I am really bothered by itchy skin, does any one else have that problem?I was diagnosed with undifferential connective disease.... I stopped Plaquenil as the Dr thought I could have developped an allergy, I am now on Chloroquine and I am still going nuts. The Dr mentioned that Plaquenil takes awhile to get out of my system. I also experience dry itchy pathes on my neck and break out exemia in certain areas. The drugs help me physically but I am so itchy!!!! I have seen a dermo and she mentioned the ichy patches looked like dermatitis????? any thoughts out there??
Janmar, I had such problems from childhood, decades prior to Plaquenil. My hands had the blistery form of eczema (tiny blisters that itched enough to wake me at night); for this, my dermie gave me shots & prescription cortisone creams (now available OTC). My legs were just flaky (no blisters). My dermie termed these problems "eczema" or "de-fatted skin".
I switched laundry detergent & hand/body soaps, to perfume-free kinds. (I was warned off Ivory, because it's too pure & strong.) I keep hand cream by all sinks & apply freely. (Make sure you dry your hands thoroughly before putting your rings back on.) During heating & A/C seasons, I'll apply body lotion (like Eucerin) several times daily if needed. I never wear wool, even cashmere, next to my skin (lifelong problem with wool). I installed a humidifier in the bedroom. I use rubber gloves religiously when washing dishes, using cleaning chemicals, etc. If my scalp gets dry, I use Lupiderm shampoo for awhile; and I always use hair conditioner. Plus, I drink plenty of water. With these measures (& many hideously expensive dermie appts. ), I got my problems under good control decades ago.
Did your problems start before or after Plaquenil? (Just curious.) But even if they DID start after, that doesn't always mean it's causal, alas. Anyway, have you tried any of the measures above? Good luck! Bye for now, Vee
HI Veej thanks for your reply. These problems have definately started after the introduction of these drugs. We use non sented tide and we haven't changed anything with our househole products. I do have to drink more water and moisturize more...I know that will help.... I have wondered if this is just my changing condition or the drugs?? This is all such a guessing game!! It is so frustrating.
I also take Plaquenil, I had terrible skin problems even before Plaquenil. I too, use so much moisturizer. My hands are just really terrible, especially in the winter. Nothing helps them!! The only time I feel itchy is right after I get out of the shower, but soon as I get out I use Oil of Olay and My skin feels much better. Wish I could find something to help my hands, the cracks get sooooo sore!!
I take plaquenil, but i've had varying skin problems before I ever started this med. I did good for along time on this med, but this past summer I had a flare of something and this time had low grade fever for 2 months. ANd during that time i got hives all around both elbow areas. Then I got some rash, I think, that i'd never had before. I could see the hives and of course they itched like crazy. But then I got patches of thickened, scaly skin that was painful, plus I scratched it open constantly. Some parts of it got better, but I still have hardened skin areas and the skin there is now darker. I've had hives tons of times in my life, but this is the first time this has happened afterwards. Ive been taking plaquenil getting close to 3 years now, so I'm not sure if that is the cause or not. At the time it happened, I was not taking any other meds. Though after it all started, I was taking alot of Ibuprofen mainly for my joint pains. Today I am getting small hives & Itching over my incision site on my spine again. I also take Detrol LA, but that rash & itching started before taking this med. Actually I am not even sure if I have lupus now or not, but something is surely going on.
I've had itching skin for more than 20 yrs. Sun sensitive,hives,vitiligo, and sores that no one really has a name for. I've been to dermatologists & tried a boat-load of meds. The only thing that helps the sores is to apply daily peroxide, then Bactoban creme & eventually they heal from the inside & go away, only to break out new spots somewhere else... It's on-going. I had all these problems long before I was put on Plaquenell.
I am really having a bad time now, I have completely gone off Plaquenil and am slowing down on chloraquine due to all my rashes. I had such good benefit on Plaquenil. I am unfortunately becoming more symptomatic (jointy, muscle cramps) and am completely discouraged. I have what appears to be this "butterfly rash" on my cheeks and am so itchy all over. I think I am in a flare and the Dr wants me to reduce the chloraquine to 4 times a week due to my rashes. I am thinking to go off it altogether. I am so worried that I will completely go into a bigger flare, however these rashes are driving me nuts and my face is so flushed. I have neen diagnosed with UCTD, however in my heart I think it is lupus. I don't know if these rashes are the condition or an allergy to meds. I am so upset Does anyone have any suggestions ??????
Janmar, You said you don't have a Dx yet beyond UCTD. Has your dr. told you what UCTD can "resolve into", meaning what are the odds for various more specific answers? Maybe some of THOSE possibilities could suggest some possibilities for your skin problems?
Do you know the phrase "lupus urticaria" (hives)? I know little about it, only the name. I don't even know whether it occurs due to the disease, or due to meds. I think it's fairly rare.
Have your rashes been biopsied? You could ask your dr. if biopsies are considered useful for your rashes. I think some of the itchy rashes are Dx'es of exclusion, meaning biopsy results may rule things "out" better than they rule things "in". But can't hurt to ask, right?
I think people here have written about getting rashes on generic hydroxychloroquine, then switching to name-brand Plaquenil & tolerating it much better. Are/were your meds generics?
I truly hope you get some answers ASAP & can get some relief. GOOD LUCK! Sympathetically, Vee
Hi Veej, thanks for your reply, you are always so helpful. My Rheumi does not want to give me a diffinitive Dx at this point other than UCTD....we did discuss in general what it can turn into.. she is an excellent physician but quite conservative. I see her every three-four months and in between I have all these different sympyoms. With all my rashes it seems to look like SLE but your comment about lupus urticaria is interesting. I did have a biopsy from a dermo and it came out inconclusive, (dermatitis)... I see another dermo in January who is the head of a dermo clinic in our area. Since going off Plaquenil, I am definately more symptomatic and my symptoms travel. One day my elbow is very painful, the next day the pain could be gone but I am "rashy". This condition makes me feel I am crazy!! How could these symptoms come and go continually??? I am now taking Chloraquine evey second day, (4 times weekly) I am not sure what that is doing. All I know is that going off Plaquenil has made a difference and I am still itchy off and on....I will continue with this regieme until I see my Rheumi in February. By the way, I did take the suggestion to go off the generic brand of Plaquenil and switch to the real thing... no difference in the rashes.....so frustrating!!!!
Janmar, Hi. I don't know how much flexibility you have in doctor selection...
After many visits to local dermies, I asked for & got copies of 2-3 lab reports, because I felt so lousy overall & was getting nowhere with either dermie or then-GP. I could tell the labs had done "microscopic evaluation", because results were couched in terms like "subtle hints of vacuolar alteration at the dermo-epidermal junction", "trace of mucin", etc. All I saw was that someone had squinted thru a miscroscope & described what he saw.
The dermatopathologist who did my final biopsy (teaching hospital, big metro area) did the above, naturally. BUT he ALSO did immunofluorescent stain tests. It was those stain tests that revealed bands that are *100% definitive* for lupus. He explained that stain tests alone can't differentiate the *kind* of lupus rash, that is, discoid vs. subacute cutaneous vs. malar vs. tumid vs. etc. What hit me immediately (like a club ) was that my local dermies had never called for this additional level of testing.
Together my rheumie & dermatopathologist worked all angles. I just kicked back & watched them hit all the bases: skin microscopic findings + skin stain tests + visual inspection of rash + bloodwork + overall clinical picture, including how many ACR criteria I'd met across my lifetime.
If you can get a team to work together to cover all bases, then I bet your chances of getting answers improve dramatically.
Looking back, all my previous doctors went down one path of inquiry, then stopped cold. In almost laughable contrast, the "joint venture" I watched my city doctors launch was precisely what I'd expected to see all along. Professional. Up-to-date. Scientific. Logical. Collegial.
I really hope you can find a team (rheumie + dermie + whomever else you may need) to work *together* effectively on your behalf. I've got my fingers crossed for you! Thinking of you, with my best, Vee
Thanks Veej, I am hoping to find some answers after my appointments in January. I have just recently considered joining a local lupus support group. I don't really want to see advanced cases at this stage, however it may be helpful connecting with others facing similiar challenges. I find this healthboard so informative!!! It is hard for me as I counsel people with chronic illness and here I am on the other side!!
Janmar, Many people with lupus remain fairly mild. Even if you meet people with severe lupus, that doesn't in any way mean that *you'll* end up with the same degree of problems. I've been on a pretty good (though not perfect) plateau for 7 years. But before that, I was, well, a mess! So it's possible, truly it is, with an accurate Dx & appropriate treatment.
And good luck with your January appointments. Hang in there! Bye for now, Vee
Last edited by VeeJ; 12-19-2007 at 06:18 AM.