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04/22/2010 12:49 AM

Lupus & Itching!

Posts: 4
New Member

I have had Lupus for 12 years. I am going crazy with itching all over my head, face and upper torso. It mostly happens from 6 pm. on every night. I don't have a rash, but I wake up scratching my eyelids, my inner ears, my neck, my forehead, my upper back, etc. into shreds. I am absolutely going nuts with this! Any pain medication I take seems to bring this on. I am currently on Oxycodone 15 mg. and am taking Benadryl round the clock every 4 to 6 hrs. and nothing helps. I can't handle the pain if I don't take something. Any ideas? Is this a normal Lupus symptom? Thanks, NanaLupie

04/22/2010 08:36 AM
Posts: 4128
Group Leader

The itching could be caused from the narcotic. I can't remember which one I was on that caused the itching with me. It drove me nuts! I ended up switching to something different.

It could be an allergic reaction to something too.

Or, it may or may not be an actual Lupus symptom.

I would talk with the doctor about it.

05/20/2010 12:26 PM
Posts: 305

I get itching a lot too and I think it has to do with the lupus affecting the nervous system. But you should bring it up with your rheumy. I am interested in hearing what your dr. has to say. keep us posted. I know how frustrating it can be!

Side note - I find that icing the area or taking a bath with epsom salts help to alleviate the itching...

05/22/2010 07:36 PM
Posts: 2019
Senior Member

I get itching when I have to take the Dilaudid! Luckily, this has lessened the longer I have taken it. Do you take that medication perhaps? Benadryl did work for me to stop the itching. I also get itching/burning/tingle in my hands and feet and thing that is related to CNS Lupus but my rheumy is saying no Dizzy

I hope your doctor can get you some relief.

Take Care,


08/11/2010 01:45 AM
Posts: 148

Been there done that.

Could be the oxycodone... could be the lupus.

I would never suggest not taking the pain medication. I don't want to live without mine.

Have you tried changing pain meds? Another opioid may not cause the itching.

What about a different anti-histamine? Chlorpheniramine (Chlor-Trimeton),


Doxylamine (unisom tablet)

First-generation antihistamines also work in the part of the brain that controls nausea and vomiting. This is why they can help prevent motion sickness. Because one of the most common side effects of first-generation antihistamines is feeling sleepy, they are sometimes used to help people who have trouble sleeping (insomnia).

2nd generation antihistamines

Loratadine (Alavert, Claritin)

Cetirizine (Zyrtec)

There are many prescription antihistamines available.

Talk to your pharmacist and see what he/she recommends. The pharmacist is a wealth of free information and knows more about our medications than our doctors.

The only thing that helped me during an itch attack was to take an ice pack from the freezer and apply it directly to the skin. This caused the itching to stop after a few minutes.

09/12/2010 08:45 PM
Posts: 10

Just posted this today - so I feel your pain!

Diagnosed at 23 with SLE/Lupus. Since speculated Fibromyalgia/Schogren's Syndrome as well.

I am 50 now and have done so well. Never taking 'lupus' drugs of any kind.

I do take warfarin due to some clotting issues - multiple DVT and a pulmonary embolism at age 41.

Most recently, over the past few years it seems I've developed a horrible skin itching, sometimes exacerbating to what appears to be hives.

Reactions to almost everything including cosmetics, lotions, more sun reactions than ever.

I feel awesome and energetic one day and seem to over-do. Two days later, sometimes sooner I am completely exhausted, my skin seems to be my enemy and my body has to recuperate for days.

I have recently cleared out all my expensive hair products and skin care products, makeup, lotions etc. My skin was so miserable, I just could not take anymore. I have resorted to using olive oil, oatmeal, vinegar, aloe and lemon juice.

In a period of a week, my hair was healthier, had more body than it has had in years and it is unbelievable the difference in my skin. It looks and feels 20 years younger!

Funny how we buy into the commercials and marketing, when the products in the store bought products is probably what's caused our 'auto immune' response in the first place! And we think we're SO smart. Oy..

Even with this improvement, if I lessen the amount of the home remedies, the itch continues to return.

Worst symptom, the right side of my head seems to swell, itch like mad and eminates heat to the touch. The bone behind my right ear becomes swollen and painful. Symptoms on the left side occur as well, but the right is markedly worse!

I have always felt so blessed that I have not had major organ involvement, such as kidneys, etc. I have learned that I cannot do ALL things and that ALL things I need to do can be done at a slow, but steady pace. I work a full time job and have always maintained that I WILL NOT quit! A job is what keeps your mind working and your self esteem churning. To stop for me would be slow disintegration. I have suffered with depression most of my adult life and I do not intend to be the 'victim' of anything.

So I have lupus and several other 'isms'. It does not have me. It has been 27 years and I hurt less today than when I was 23. I am much wiser for having it and I am much more patient with others. I don't wake up each day wondering how terrible it is going to be. I wake up praying it's going to be great and if it isn't I can wait until tomorrow. All will be well if I just try to take care of myself today.

This itching thing is just getting on my nerves because it definitely is impacting the greatness of my day!

09/18/2010 11:57 PM
Posts: 10

Didn't mean to be a 'thread killer' with my previous post. Sad

Just a tip - Witch Hazel. OMG. I soaked a cottonball in witch hazel this evening and just gently parted the hair, soaking the hairline. INSTANT Relief!

I was to the point of scratching and clawing. Driving myself insane. Sad

Now, to see how long the relief lasts.

On to the Dermatologist on Monday!

09/29/2010 04:57 PM
Posts: 4
New Member

I thought I would go nuts with the itching! The doctors wouldn't believe it was from the Lupus at first. I finally started taking Benadryl on a regular basis and it finally began to help. I think lupus affects skin in more ways than we have realized. I have to watch what kinds of shampoos and soaps I use. I still itch sometimes, but since I have been on Cimzia I am doing better. I hope you are doing better! Take care...Smile

09/30/2010 09:32 AM
Posts: 706

Hi, I'm new here. I was reading through some posts and saw this one regarding itching.

OMG, you mean to tell me that other Lupus patients have chronic itching too?! I itch a lot. Especially my back and arms. I also have itching on my scalp, but I attribute that to a psoriasis type thing, and I shampoo with Denorex that helps keep the itch at bay. My face, forehead and inner ears itch incessantly. I mean, I'm digging in my ears with Q-tips to quiet the itch in my ears which sometimes causes outer ear infections from scratching them so much. And my forehead; I dig at my forehead with my fingernails! And then lately my arms have been itching like mad. But the itch on my back drives me insane! I get to scratching my back with my back scratcher and have drawn blood a couple of times. I've never thought to put the incessant itching and Lupus together.

And NanaLupie, I totally agree regarding the skin. My skin has been the primary target of the Lupus it seems. Why not, it's the largest organ we have on our bodies. I've become sensitive or even allergic to things that I've never been sensitive to before. I had to change deodorants to the more expensive sensitive skin type because my old deodorant made my underarms itch like mad. And I get rashes from time to time that are unexplainable.

I'm going to ask my dr about this and see if he's heard of this complaint from other Lupus patients.

Thank you so much!

07/23/2012 11:10 AM
Posts: 2

I have wondered about the itching I have, esp at night,being caused by Lupus. Two things to note here, I have not gotten a firm diagnosis yet, and I do take meds that may or may not be contributing to my problem. The thing I never rule out is how Lupus seems to have it's unpredictable way with my body and I never know what I'm in for in addition to the usual and more standard symptoms, fatique, joint pain and swelling. I know that I develope sensitivities so easily now. For example, I put on a pair of flip flops in good condition that have not worn since last summer, that starting swelling and itching around my toes that lasted all night and drove me crazy. Now what is up with that?! I am always fascinated with what Lupus can bring on. And right or wrong, anything odd and new I deal with, I blame on Lupus.

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