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Itchy rash
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ssh49tn posted:
How do I control the itchiness of the rash? I was diagnosed a week ago with lupus, & have been on the plaquenil since then too. Today I called the clinic that I use, & left a question for my doctor, for them to ask if I needed to increase my dose, needed something else, or just wait it out, & give it more time to work. Well, they close at 5:00, & no one ever called me back. I have to use a clinic that takes only uninsured patients, so sometimes feel like I'm getting short shrift. I have been doing some research on lupus, & the rash around the cuticles of my fingers looks like what I saw in a slide show. I finally just asked her outright if I might have lupus, so she ordered blood work. And, the test came back positve. But, the same test was positive 8 months ago, but nobody followed up on it. Even the neurologist who had ordered the test in the first place. He had his nurse tell me the tests were fine, & he didn't need to see me again. I am very frustrated at this point, so sorry to ramble. I know next to nothing about lupus, so am learning as I go. My rash has started to spread, since starting the med, so I'd like to know what anybody else does to help relieve the itch. I have some special cream that I'm only supposed to use twice a day, but it doesn't keep the itching down. If I take benadryl, it makes me sleepy, but I am using a benadryl anti itch gel that does help some, but I have to keep reapplying it about every hour or so. Any advice at all would help. Oh, I have 2 more years before I qualify for Medicare, & at this point, can NOT afford insurance.
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nancyj95 responded:
Just check to see that the increased itch and rash wasn't caused by the plaquenil. I had a terrible reaction to this med, which took a while to happen and then 3 weeks to get it out of my system!
Good luck and hope you're feeling better soon. Are you seeing a rheumatologist? You should be.
Nancy
 
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ssh49tn replied to nancyj95's response:
Thanks for your reply. And, no, I'm not seeing a rheumatologist. With no insurance, I'm doing good to afford seing the APN that I see. I called the clinic that I use, Friday, to ask them to ask her if I needed to increase my dose of the plaquenil, or if I needed a change, since this med didn't seem to be working, (I'd been on it a full week that day.), or to just give it more time to work. They NEVER called me back, so just left me hanging. I don't feel real bad now, except the rash is spreading, & some spots are itchy. The lady that I see is not back in until this coming Wed. & if it's not any better, I will call & see if I can get in to her. I've not had any of the side effects listed on the pamphlet that the pharmacy gave me, nor any that I found listed online. but that is a good suggestion of it being a reaction to the med. I just get so aggravated at not being diagnosed correctly sooner, & going through all I've been through this last year. I am NOT a patient person. LOL!!
 
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ssh49tn replied to nancyj95's response:
Just wanted to touch base, & let you know that the clinic called me this morning at 8:30, & said the main doctor wanted to see me, this morning, so I got out of bed, & away I went. He said that the rash is caused by being photo sensitive to the sunlight, which is caused by the lupus. I have some cortisteriod (?) cream, & he told me to mix that with some Keri lotion, & rub it on every time I start itching. I didn't have the Keri, so used Eucerin instead, & it DOES help the itching. He also said that I don't need my blood tested in 6 weeks, he said for at least a year, but he wants me to come back in about 6 weeks, so he can check the rash. Part of it, is real dry & bumpy, & it's only on my upper left arm, at the bend where my elbow is, & same place on my right arm, plus the nape of my neck, & down on my chest area, & shoulders. But, only spots of it itch. He told me to avoid the sun as much as possible, & when I'm out, to wear longer sleeves, plus higher necklines to keep the sun off. I think I'll get some sunscreen instead though, & try that. It's starting to get cooler out too, so the sun isn't going to be as strong for the next few months. That'll help a lot. And, thanks again for the encouragement!
 
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LStudley730 responded:
I am sorry to hear about your recent diagnosis I was recently diagnosed as well in January. For me the plaquenil actually gave me a horrible rash for about 2 weeks it is actually a rare side affect but it happens don't worry it goes away it starts REALLY itchy then scales then it burns then its gone i would take HOT showers to alleviate my skins irritability then load up on an oatmeal based lotion u can find this ANYWHERE but oatmeal is used for poison ivy so an oatmeal based lotion helps but stay strong it doesn't last forever! I know what you are going through
 
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ssh49tn replied to LStudley730's response:
The clinic called me Monday, & the doctor wanted to see me, so I went in, & he said it's not an allergic reaction to the med. But, he said it's photosensitivity, caused by the lupus. He said it's like being allergic to the sun, but isn't an allergy. So he told me to mix a special cortisone cream that I was prescribed, with Keri lotion, & rub it on every time I start to itch. It does help, & I do have a BIG jar of a cream that is oatmeal based, plus I have some oatmeal bath stuff that I bought at Walgreen's. And, for the itching at the base of my scalp, & above my ears, scalpicin helps with the itchiness there. So I'm just taking it one day at a time. I'm supposed to go back in 6 weeks, for the rash, & if it's not better, I guess he'll try something else. And, I've found that if I can keep a positive attitude, that helps a lot. I have a very strong faith in God, a very loving & supportive family, & some wonderful friends, several of them I've made on the internet, but they are just as important to me as the ones I see at church & other places. Thanks for your input! God bless you! Oh, before I forget, the biggest problem has been getting diagnosed. They've known for over 8 months that one of my blood tests came back positive. But, because the pathologist told my APN, that at my age it was nothing to worry about, she didn't do anything about it. I just turned 63 last month, & I told my APN that the next person that says that to me, about it being no big deal at my age, I'm gonna smack 'em upside the head!
 
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R Swamy Venuturupalli, MD, FACR responded:
There are few home remedies for a lupus rash that can help reduce the irritation and the itch considerably. Oatmeal is known to yield positive results as far as lupus rashes are concerned. Add ? a cup of oatmeal to a tub of warm water. You will need to sit in this solution for a minimum of twenty minutes. Aloe vera juice could also be applied on the affected area to gain relief from the pain and to reduce the rashes. Cod liver oil, vitamin E oil and olive oil are excellent for lupus rashes. Apply a few drops of any of these oils on the affected area daily. Baking powder if dabbed to the rash also helps relieve local irritation that is caused by the rash. Drink plenty of water (6-8 glasses) and include a lot of green vegetables and fresh fruits into your daily diet. Always bear in mind, no matter how itchy the rash may be, one must take special care not to scratch them as that worsens the itchiness.
[br>In terms of medications, corticosteroid creams can help the itchiness- 1% hydrocortisone cream is available over the counter, stronger corticosteroid creams are available by prescription. Anti-histamines like benadryl can be used at night time but as you mentioned, can cause significant drowsiness. In the daytime, "non-sedating" anti-histamines such as Claritin (loratadine), zyrtec (cetrizine) or allegra (fexofenadine) could be used.
[br>All the best!
 
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MaryConcordNC responded:
First of all - limit sun severely - no more than 20 minutes, and always use sun screen. Once you have it, though, it is difficult to treat. I like what Dr. Venuturupalli recommends. When I had this, we didn't know I had Lupus, and several doctors were prescribing multiple antihistamines (different types) concurrently - I take Zyrtec already, and we added Benedryl and Tagamet (yes I know it's for ulcers, but it is also an antihistamine). I would not recommend this, (you should always check with a doctor first anyway) and I don't think it helped much. I alternated Benedryl gel, hydrocortisone cream, and I found that Gold Bond medicated cream seemed to soothe the most. I used Basis soap and shower gel instead of regular soap, and I used colloidal oatmeal in the bath. I think you have to experiment. Also, I tried to limit the amount of clothing, especially anything tight. Sometimes I also used cold packs when it was really bad.
 
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ssh49tn replied to R Swamy Venuturupalli, MD, FACR's response:
Thanks for your response. For now, the one rash is not bothering as bad, because the internist put me on another round of low dose prednisone. The break out from the lupus, doesn't bother me too much either, but I have all kinds of creams that I can put on it, plus a prescription for betamethasone. I'm really glad that WebMD is here for us people, & that some doctors do STILL care about patients, & not just 'results'.
 
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nancyj95 replied to ssh49tn's response:
Glad you are getting some relief. Hope that continues and the rash subsides completely! I know I am so lucky to have doctors who are caring and work to find solutions for a problem. Good luck and keep your chin up. It isn't unusual to be diagnosed late in life (I was 52 when diagnosed), docs don't always think of it. I was lucky that my primary had a PA who thought of testing me for it.
 
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ssh49tn replied to nancyj95's response:
Well, I'm glad they finally diagnosed it. At least my dizziness isn't as bad as it was, & I'm thinking that the lupus is what is causing it, in part at least. I'm just thankful to at least have something to actually try to treat to combat all that's going on, & know that it isn't all 'just in my head.'
 
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ssh49tn responded:
Just wanted to let everybody know that NONE of the suggestions have helped me at all. As long as I take prednisone, I don't itch, but the rash doesn't clear up. I am at a loss of what to try to make this easier to deal with. I've even got some cream, & a gel, too, that have aloe vera in them, but that hasn't helped. I'm beginning to think that I'm allergic to the cortisone creams, if that's possible? But, I do want to thank everybody for the tips, & concern they've shown me. God bless you all! I'm also thinking that I may HAVE to try to go to a specialist, & see if I can get some relief.
 
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lisatru62 replied to ssh49tn's response:
Isn't Lupus fun...not! I itch a lot of the time and it comes and goes. Had a rash for years, started Plaqunil and many months later the rash went away and the itching, while not completely gone is better.

Sometimes these things just take time and unfortunately sometimes it takes a long time. Keep up the lotions and staying out of the sun which can make it worse.

Lisatru62
 
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ssh49tn replied to lisatru62's response:
Thanks, Lisa. I am not allergic to the Plavix, as the internist thought. But, the new med, aggrenox, definitely does NOT agree with my system. It gives me heartburn, & acid reflux, really bad, so he prescribed Zantac, but I may have to have something stronger. And, the itching is good some days, bad others. But, at least I have discovered that it's due to the lupus, most likely, & not something I'm allergic to. I left a message at the clinic for him, that I can't take this new med, & they're supposed to tell him tomorrow when he comes in. He'll put me back on the Plavix, which is cheaper anyway, & may put me on another round of low dose prednisone. I don't like the gaining weight part, but can't handle the itching either. LOL! I am VERY grateful though, that, WebMD is available, & that there are lots of caring people who share info. I was surprised that there's so little info on lupus. So I'm learning as I go!
 
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ssh49tn replied to lisatru62's response:
The internist took me off the aggrenox, & put me back on the plavix, plus gave me a new scrip for prednisone. He does his in smaller doses though, so I don't have much problem with it upsetting my tummy. But, boy, did the aggrenox make up for that! I started with the acid reflux almost immediately. And, I do use lotions all the time, plus me & the sun have always been enemies. (I have red hair.) This site is a real blessing to me too. This is where I'm learning a lot. I have never known anybody with lupus, but one lady at work, & she's not very nice, so no use asking her questions. I think the plaquenil isn't helping me much, so after the first of the month, I'll make an appointment to see the regular dr that put me on the plaquenil in the first place. Sometimes, my APN doesn't always agree with things, & she wasn't happy about putting me on it. But, I told her I'd rather take my chances on side effects, & maybe fix whatever was wrong. Of course, that was before I read about all the weird things lupus can do to you. LOL! But, thanks for you input, & encouragement. And, anybody that has never had lupus, has no earthly idea what it's like!