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Hi - I can never get a straight answer from my doctor whether or not my itchy skin is related to lupus. It is so aggrivating. I can just be sitting at work, or watching TV, or whatever, and all of the sudden I start itching out of control. Usually in one area at a time. Like, one attack might just be on top of my thigh near my knee. The next attack I have may be on just my shins and the next attack may be just my forearms. It is a very deep itch, like it's way down deep in the skin and all the scratching in the world won't relieve it. I even cause bruises from scratching. At the first sign of an attack, I usually take a Claritin. Sometimes the itching goes away on its own even before the medicine kicks in, but other times, I have to wait the 30 minutes for the Claritin to take effect and give me relief. I don't know if I have a rash with the itching because although the area where I'm scratching is a bit red, it could be from the itching itself.

I've read that lupus can cause itching, but the doctors say that it's too difficult to know if the itching is from lupus or from allergies, etc. One thing to keep in mind though is that lupus can cause us to have more allergies than we used to.
Hiya Everyone,

I have had SLE for over 30 years and I have never been given a firm answer to this question. I have been dealing with skin problems like this for a long time. I can identify my own definite lupus rashes, i.e. butterfly rash on my face and the type of rash that I know for a fact is lupus related.

Rashes that don't quite fit though are all too often put down to lupus. Our skin can be so sensitive to different drugs we take for our illness, and therefore I personally think that any slight touch is heightened which also means to me that a little itch to someone else is a major scratching session to us.

I am not convinced that my rashes and so on are totally lupus related. I would be so careful too of your doctors thinking this, question them again and again. Sometimes lupus can be held responsible for a lot of things and other possibilities disregarded. So this and any type of skin problems need to be looked at seriously.

goldenwings :angel:
hey my husband had that butterfly rash and he has sle lupus more less and you are probally right about you having it your doctor can run a test on you to see if is lupus its not a hard one for him to do now days because they do it more now than ever it took us 3 years to get my husband dignosed because they kept saying its more common in wemon well he proved them wrong sorry to :angel:
Dear mrsb23,

I agree with the others, that it's hard to tell. Big help, huh? :D

There are actually various kinds of lupus rashes, some of which are apt to itch & some of which typically don't itch. e.g., malar (butterfly), discoid (as in the kind that depigment &/or scar); SCLE (circular kind vs. psoriasis-like kind); bullous (watery, blistery); tumid; etc.

To illustrate: my SCLE rashes were the annular (circular) type. On me, they didn't really itch at all. Many years ago I had a watery, blistery rash that went almost head to toe---and BOY, did it itch like mad. It was (maybe) a bullous lupus rash. (I wasn't Dx'ed with lupus until, oh, about 35 years later.)

People with lupus seem to be (I've read) more prone to hives. Plus more prone to hyper reactions to insect stings (I go berserk with bee, wasp & yellow jacket stings---even mosquito bites).

Don't know if this helps or confuses! Anyway, take good care. from Vee
I haven't had the totally official diagnosis yet either, but I relate to the overall itching. I have the same thing, sometimes on my legs and sometimes on my arms etc.

I also relate to the bug bites and mosquito bites, and of course I've had hives for no reason I could figure out. Then as a young girl I use to get the watery blister rash always on my arms at the bend two or three times a year. Of course then the Dr.s just told my Mom to put lotion on it. Makes me wonder when all this really started.
Hi, everyone. I forgot to mention vasculitis yesterday. Even a shower that's too hot can trigger a burning itchy feeling on my feet & ankles. But I can actually see the evidence of a cutaneous vasculitis problem---discoloration & breakage of many tiny blood vessels. (But it's the *systemic* kind of vasculitis that's the one that REALLY can cause profound problems.)

I get that overall burning & almost-itchy sensation, too. It's probably "just" episodic inflammation, without any change to the look of the epidermal (outer) skin. My shins & long bones of arms started this nonsense when I was about 13. Even that far back (I'm ancient now :D ), I had prolonged low-grade fevers, pain, messed up sed rate & WBC, etc.---and would land in the hospital, where everyone would stand around & scratch their heads, more or less.

In short, DITTO to what Glojer just wrote, wondering when this all started. Same goes with me. Take care, all! from Vee
Itching drives me crazy! I know for a fact that Plaquenil causes a horrible itching reaction for me, so I can't take it (I tried it twice with months in between, and had the same awful result both times). There was no rash or hives or anything, just insane itching -- I litterally scratched myself raw before the Benadryl would kick in.

Now I just have general annoying overall itching. I pretty much scratch off and on all day -- it seems to be the worst on my back (usually in the most inaccessible spots, of course!) and on my arms. As with the allergic reaction to the Plaquenil, I have no visible rash or hives with it. I generally try to just put up with it, but when it gets particularly bad, I will take a couple of Benadryl and go to bed (that stuff knocks me out!).

My rheumy has me on Chloroquine Phosphate now instead of the Plaquenil, so I sometimes wonder if maybe I am just having a milder allergic reaction to that.

All you itchers out there definitely have my sympathy! Hang in there!


PS I think the backscratcher is one of the greatest inventions ever!
Boy, can I relate. My itching is in a most unfortunate place -- in the soft tender folds of skin around the genital area. It’s gotten more frequent recently, so I’ve been thinking about it as well as doing a little research.

I think, for me, this particular itch is some random combination of my Sjogren’s Syndrome and the “thin skin” side effect of Prednisone. I haven’t found a cure, or even much of a relief so far.

Just wondered if anyone else has run into this particular itch and if so, have you found any tricks for relief?

Keep on scratching……NOT!
I have mixed connective tissue disease, and have been itching quite a lot lately. I know it causes dry skin. For some reason it seems a lot worse this year as the other night I didn't hardly sleep at all due to being itchy and scrathing.
I think there is no question, lupus definitely causes itching, whether that be from the whole-body inflammation that is going on, or more specifically, from vasculitis in the extremities. I have itches that I never had before, in strange places, that recur again and again in the same places, especially when I am having some sort of flare-up. For example, I can tell the past month or so that a little something is happening with my lupus because I have had some itching in the anal area. I had NEVER had anal itching before lupus came into my life. Before I was diagnosed and began taking prednisone, I also had itching in the genital area. My face itched, mostly around the eyes and jawline. You don't know what annoying is until you have experienced itching along your eyelash line that will not stop! And of course, there was the maddening scalp itch that nothing really helped until I began taking prednisone. I have other rather odd recurring itches: my feet itch, this one spot on my right knee itches. I agree with others who have said it is not a normal itch, it is a deep itch that scratching only barely touches.

Also, if you have severe kidney involvement, it is known that those whose kidneys are near or at failing experience intense itching.
My wife is now being monitored for Lupus and one of the things that is happening to her right now is intense itching. Her Rheumatologist indicated it very well could be Lupus related. He's the best in this field in Oklahoma. Does anyone have any ideas/treatments that help to reduce the maddening itching? :confused:
dmorcats, I hope your wife can get some relief from her itching. I know it can be awful. Something I found soothing is the lotion Sarna. Where I live, they keep it behind the counter in the pharmacy, although you don't need a prescription to get it, but you have to ask about it. It does NOT kill the itch, but it is so cooling and soothing (from menthol and eucalyptus), that you forget about the itching for a little while.

If your wife's itching truly is from Lupus, she doesn't have a lot of choices. I begged my dermatologist for something to help me, but he told me that as soon as my treatment for lupus began, the itching would go away, for to treat the lupus was to treat the source of the itch. All he offered me was a strong antihistamine, which helped only a little. I talked with my pharmacist about all the over-the-counter antihistamines that are for itching and hives. She told me that my best bet was simply Benadryl. Of course, this makes most people really drowsy, but she explained that the newer non-drowsy antihistamines were less effective than Benadryl, especially for itching.

Of course, real relief from itching is attainable, but the only way I know of to achieve this is through the use of steriods in one form or another. The weak hydrocortisone they sell over-the-counter is useless as far as I am concerned, it did nothing for my itching. The very day I took my first dose of oral steroids, my itching disappeared like magic, and has never returned. I also know of other people who have been given some strong topical steroid creams by prescription that cost over $100 a tube that did the trick. But over the long-term, steroids have side-effects. Only you and your and your wife can determine if she would benefit from using these despite the side-effects. But in the short-term, perhaps she could discuss with her doctor at least taking a short course of prednisone to get some relief for awhile so she can think clearly about her future course of treatment.

Best of luck. I hope it turns out she doesn't even have lupus.
Hello Everyone,

The only other thing is to use products that are soap free, perfume free and as natural as you can. Laundry detergents can make the itching worse, as can environmental issues. Bed linen made of pure cotton helps, pillows and pillow cases made of natural fibres. I now all of these things can be expensive, but if you can maybe change only one of the products you use, it might help.

One thing I do find helps, me personally anyway, is to body brush your skin, or in my case get someone to do it for me he he. Dry flaky skin comes off like confetti as you know, and this can help a little too. At the same time you are getting relief from the itching but in a gentle non invasive, scratching with nails type of way.

I agree, I am driven mad by itching at times, but try to minimise the dreadful discomfort by using some of the above if I can.

Hope you are all doing ok today.

goldenwings :angel:
Re: Lupus & itching
May 10, 2005

I agree with aquanegra that Benadryl is probably the best OTC antihistamine to relieve itching. It works relatively quickly, but it can cause quite a bit of drowsiness. I usually reserve that as a last resort, and then plan to spend at least the next few hours in bed asleep. I sometimes end up with a Benadryl hangover in the morning, but at least I got some relief from the itching!

Another thing that the pharmacist told me to try is Aveeno Oatmeal bath. Any pharmacy (Walgreens, WalMart, grocery store, etc) should carry it and it is relatively inexpensive. All you need to do is sprinkle one packet under warm running water (not too hot -- hot water makes the itching worse) and then soak in it. It doesn't make the itching stop, but is really very soothing, and can be repeated as often as necessary.

Please tell your wife that she has lots of company when it comes to this awful itching, and that she has all of our sympathies! Good luck,


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