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Old 11-05-2009, 12:27 PM   #1
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skin lupus

I was diagnosed with skin lupus. My symptoms are extremely itchy hive like bumps mainly on my arms & legs. I've been reading that skin lupus symptoms are rash like but not itchy. Can you tell me if skin lupus can be itchy and if there are any products for stopping the itch? It is so bad it wakes me up at night. I find that applying ice helps and taking a bath with baking soda mixed in with the water helps some too, but I can't sleep in the bathtub nor can I hold ice packs all over my body all night. Any suggestions, please? Thank you.

 
Old 11-05-2009, 06:09 PM   #2
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Re: skin lupus

have you tried benedral for the itch?

 
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Old 11-06-2009, 05:50 AM   #3
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Re: skin lupus

rachelsarah - you are definitely not alone. Trying searching for "lupus rashes" and you should be able to find some good sources talking about the MANY kinds of rashes associated with lupus. There are types that can be extremely itchy. I've just recently had my first appointment with a rheumie a few days ago and we discussed this in great detail. Basically, I've seen numerous dermatologists and allergists who all were left stumped by my skin manifestations and ultimately kept calling it eczema. Thing is, my rashes never were very characteristic of eczema!! Once I started describing my experiences, he just kept nodding his head - said that I was describing classic lupus related rashes. Unfortunately, most dermatologists and allergists my only associate the malar rash (butterfly rash) with lupus and therefore don't consider it as an option when they manifest in other ways that they can't explain.

Have you seen a rheumatologist yet?

 
Old 11-06-2009, 06:56 AM   #4
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Re: skin lupus

Serenity81

Thank you for replying. Wow, listening to you is like listening to myself telling my story. It took years before a dermatologist diagnosed me. I went to allergists, chiropractors, chinese medicine, and other alternatives....

I did see a rheumatologist 6 months ago. She put me on plaquenil for 6 month trial, as the side effects are serious and she said if it will help me I'll know by 6 months. Well, 6 months passed and nothing changed.
I'm now due for a follow up and have researched doctors in my area and I'm going to see someone else. My appt is scheduled for 4 weeks from now.
Has your doctor prescribed anything that actually gives you relief?

 
Old 11-06-2009, 06:57 AM   #5
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Re: skin lupus

Quote:
Originally Posted by Grammie02 View Post
have you tried benedral for the itch?
Grammie02
Yes, I have. The only thing that brings some relief at this point is baking soda and ice.....

 
Old 11-06-2009, 07:02 AM   #6
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Re: skin lupus

Quote:
Originally Posted by rachelsarah View Post
Serenity81

Thank you for replying. Wow, listening to you is like listening to myself telling my story. It took years before a dermatologist diagnosed me. I went to allergists, chiropractors, chinese medicine, and other alternatives....

I did see a rheumatologist 6 months ago. She put me on plaquenil for 6 month trial, as the side effects are serious and she said if it will help me I'll know by 6 months. Well, 6 months passed and nothing changed.
I'm now due for a follow up and have researched doctors in my area and I'm going to see someone else. My appt is scheduled for 4 weeks from now.
Has your doctor prescribed anything that actually gives you relief?

 
Old 11-06-2009, 06:17 PM   #7
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Re: skin lupus

First....there aren't any serious side effects to plaquenil.

Second....the only thing that will help the rash is prednisone. Remember the skin is an organ and can be inflammed like any other organ. When I itch the only other thing to get a little relief is a cool shower.

 
Old 11-06-2009, 07:53 PM   #8
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Re: skin lupus

Quote:
Originally Posted by rachelsarah View Post
Serenity81

Thank you for replying. Wow, listening to you is like listening to myself telling my story. It took years before a dermatologist diagnosed me. I went to allergists, chiropractors, chinese medicine, and other alternatives....

I did see a rheumatologist 6 months ago. She put me on plaquenil for 6 month trial, as the side effects are serious and she said if it will help me I'll know by 6 months. Well, 6 months passed and nothing changed.
I'm now due for a follow up and have researched doctors in my area and I'm going to see someone else. My appt is scheduled for 4 weeks from now.
Has your doctor prescribed anything that actually gives you relief?
Well, truthfully, the only thing that's brought me relief thus far has been the prednisone dose packs. By the 2nd or 3rd day, my rashes would calm down and I'd actually feel human again! By days 5 and 6 (the last two days of the pack), I'd be feeling all horrible again. He said that alone was a significant indicator that I was dealing with Lupus and not Fibromyalgia, he said that typically prednisone will actually exacerbate Fibro.

I started taking Plaquenil Wednesday evening. He's got me on 200mg morning and night. Obviously it's too soon for me to say if I've noticed any difference. The only thing so far is that I've been pretty sleepy the past couple of days (though it's much different than the usual exhaustion and fatigue I feel).. it seems to be going away though. And I've got a teeny bit of the dizzy/woozy feeling and some slight nausea (but that's better when I'm sure to take it with food). My rheumy also said that he'd expect me to see results anywhere from 3-6 months but he wouldn't want to "give up on it" until we try it for at least 9 months. I think it's a bit easier to deal with the waiting if you know it going in.

I also thought that Plaquenil didn't have too severs side effects... everything I've read indicates that the more extreme side effects are quite rare.

 
Old 11-07-2009, 05:08 PM   #9
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Re: skin lupus

Take the plaquenil with food. Make sure you get your eyes check regularly. If you develop eye problems it usually goes away when you stop the plaquenil. Are you taking a generic form of plaquenil? Sometimes the fillers they use can cause stomach discomfort. If taking it with food and it continues to bother you you might want to ask the pharmacist to change to another generic.

 
Old 11-07-2009, 07:08 PM   #10
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Re: skin lupus

Quote:
Originally Posted by heidiclouser View Post
Take the plaquenil with food. Make sure you get your eyes check regularly. If you develop eye problems it usually goes away when you stop the plaquenil. Are you taking a generic form of plaquenil? Sometimes the fillers they use can cause stomach discomfort. If taking it with food and it continues to bother you you might want to ask the pharmacist to change to another generic.
Yea, I noticed it's MUCH better if I take it with food and small snacks throughout the day seem to keep it in check.. not to mention my appetite has gone down the tubes, so I'm trying extra hard to eat better food more frequently! Also, it is a generic, made by Watson Laboratories.

The eye issue is a big one for me because I have ROP (retinopathy of prematurity - I was born 3 months early) and that was my first question to the rheumy! I asked if I needed to see my retinal specialist more often and when he asked how often I currently see him, I told him every 6 months. He said they typically recommend patients on it to see an ophthalmologist once a year, so I should be in a good position to keep close tabs on it. Not to mention I'm neurotic about my eyes, so I think I'm probably more vigilant than most. He did assure me though that the eye problems are quite rare. Nothing popping up on that front so far, so I'm very hopeful!

 
Old 11-08-2009, 07:17 AM   #11
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Unhappy Re: skin lupus

Quote:
Originally Posted by heidiclouser View Post
First....there aren't any serious side effects to plaquenil.

Second....the only thing that will help the rash is prednisone. Remember the skin is an organ and can be inflammed like any other organ. When I itch the only other thing to get a little relief is a cool shower.
My reumy gave me only 5 refills so I had no choice but to stop, I wonder now if I should have called her and asked if I should keep taking for a few more months....I hope you guys keep me updated here so that I know if I should try going on it again. I appreciate this message board so much.

Neither my skin doctor or my reumy prescribed prednisone, so thanks for sharing this with me, I will discuss this at the new reumy next month. Cool shower helps me too, I always end my shower with a cool run & it helps some.
Do any of you get small bumps that are less itchy and don't ever go away? I got a few a couple of years ago and they seem to be here to stay, and this week I got two more, one on my face and one on my arm. It scares the daylights out of me I have nightmares of my face covered with these bumps

 
Old 11-08-2009, 05:44 PM   #12
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Re: skin lupus

Serenity....Sounds like you have it all under control

 
Old 11-08-2009, 06:11 PM   #13
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Re: skin lupus

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Originally Posted by heidiclouser View Post
Serenity....Sounds like you have it all under control
I'm definitely trying! The trick will be keeping it in check I am getting alot of really good advice by reading these boards and also the LFA forums.

 
Old 11-19-2009, 05:48 PM   #14
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Re: skin lupus

HI, I have a form of skin Lupus called Tumid Lupus. My Dermie prescribed Triamcinolone Cream 0.1%. Yes the Tumid Rash looks like Hives that starts out as pimples or looks like them, then developes into the Hive looking rash and is Extremley itchy. The cream works wonderful. Stops the Itch and helps control the rash. Mine appears on my face. Started on both cheeks and is now only coming upon one.
I hope this helps.

Teeha

 
Old 11-20-2009, 05:19 PM   #15
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Re: skin lupus

Rachel...are the bumps on the back of your arms? tops of the thighs? I had them almost all my life and my daughters have them too. Prednisone took them away too.

 
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