Itchy irritable skin in scalp, then back of neck, now on chest and shoulders: Pred side effect? New autoimmune disorder?

[Hindags]

It's been a while. Life got busy and though I've been reading here, I've been posting less. However, recently I've developed a skin condition that has set me wondering if I'm experiencing secondary effects of Pred. or maybe a new autoimmune disorder. I know we've talked about random rashes and thinning skin, but I would have thought that since my skin is no longer prone to tearing or bleeding that it would be getting better.

(My old story: Diagnosed 12/2016, pretty unremarkable treatment with little fatigue but lots of weak wobblies in the late afternoons until I stabilized about 4mgs. Tapered to 3 mgs and then to 2mgs. but started feeling "off" and sure enough my markers were inching up and my rheumy suggested going back up to 3mg for a bit even though I didn't have the old PMR symptoms per se. (I'm just starting to revisit 2mgs now on a 37 day taper. So far I haven't noticed any side effects of the taper.)

The last several months I am struggling with first an itchy scalp, then itchy neck, now the itch has spread to behind my ears, which feel warm, my shoulders, chest and anywhere the seams of my clothing, bra straps and waistband might rub a bit. I think the area behind my ears has become irritated by very lightweight, very loosely fitting headbands that I adopted to keep my hair out of my face. My skin is totally reactive, erupting in tiny inoffensive looking but prickly/itchy bumps where anything chafes the slightest. I've also been developing milia where I've become irritated. The milia itself is prickly and irritating if clothing rests on them. I've resorted to going braless and layering with inner layers of clothing inside out. I've also tried wearing my bra outside a thin Tshirt with another layer on top so I can go to work.

I've been to two dermatologists now. First fluocinonide 5% ointment which I could barely get onto my scalp it was so thick, then a fluocinonide solution 5% that was so liquid it ran down my neck. I think it helped, but very little. Then Sarna, an OTC meant for dry, sensitive and eczema prone skin. (I've never considered myself an eczema prone person. One stubborn rash 56 years ago.) My skin has always been dry. Now I bought some benadryl ointment which helps at bedtime. I'm also back on allegra which I've taken intermittently for seasonal allergies. Nothing seems to be helping much.

The second dermatologist did some patch testing that came up with nothing. She gave me a medicine to use on the milia when the skin reactivity has receded, but to tell the truth, despite following the recommendations to change my shampoo and conditioner, wash all my clothes in hypoallergenic detergent, use only vanicream skin cleanser (as a soap) etc, etc. I'm not getting better.

It's early days and I'm still hopeful, but am concerned and uncomfortable.

I've read about double base on this forum. Is it very thick? Does it come in a lotion formulation?

Anyone else any recommendations? Advice?

[SheffieldJane]

Do you use Tramadol at all? I took it for a brief time and experienced tremendous itching as you describe.

[Hindags in reply to SheffieldJane]

I can't think of anything new. It's been cooking for months but worse now. Ugh.

Thanks for the reply.

[SheffieldJane in reply to Hindags]

I think that these symptoms warrant a dermatology referral to get to the bottom of the trigger. It may be responsible for your CRP results too.

[Hindags in reply to SheffieldJane]

Good point I have wondered that too.

[HeronNS]

Some people do react to prednisone tablets. Perhaps you can get a different version of the medication to see if that helps. Usually you'd expect pred to alleviate symptoms you describe. As it's probably an allergic reaction either to the medication itself or to a filler in the tablet I think it important the cause be found and removed, especially as it is getting worse.

[Hindags in reply to HeronNS]

Thanks for the suggestion, but I'm using the same RAYOS as I have for a long time. My worst fear is that as I go down on Pred, a new and nasty something else is emerging.

[Mary63 in reply to Hindags]

Do you use fabric softener /conditioner ? If so, stop. Don’t use biological washing products, and even non bio can cause itch/rash. I think you are in US, but in UK there is a brand called Surcare. Re scalp itch can you get the brand ‘Simple’? Or any brand with no colour or fragrance?

You might have a food intolerance which can cause itch/rash. Please send me a PM as this is my speciality...specialist nurse in food intolerance.

Might not respond tomorrow quickly as going to my son’s wedding.

[HeronNS]

This seems a bit off the wall,but just maybe ...

Try hemp oil.

Some years ago I had red itchy skin on my hands, probably caused by frequent handwashing and cold dry winter air. The skin was basically sort of broken down. I'd had a propensity to break out in a rash of itchy blisters on my hands since childhood, but this had mostly stopped by the time I was a young adult (got good at avoiding the triggers). Doctor prescribed hydrocortisone ointment. Cleared it up but, of course, came back worse than ever when I stopped using the ointment. Tried all sorts of things, practically anything I could get unscented from the pharmacy. This went on for months. Then one day a woman who had recently opened an aromatherapy store told me they'd been given some hemp oil as a possible carrier oil. They couldn't use it (I think it had too much "personality" and would affect the essential oils). She asked me if I would like to have the bottle and try it on my hands. I did this, and lo and behold my skin cleared up! I was able to "taper" off the cortisone ointment, a bit of a dress rehearsal for pred I guess. Anyway this was a number of years ago and my hands have been fine ever since. If I have my hands in soapy water too much I just pour a few drops of hemp oil on them and they're fine. I also find other skin creams are now effective.

Another non-infectious skin condition cleared up when I used tea tree oil but this did not involve a rash.

[Hindags in reply to HeronNS]

Thank you I think I'll try it. Hemp oil, tea tree oil. Why not.

I'm also thinking of going to my acupuncturist. I haven't seen her since I was first diagnosed with PMR. She was the one who gave me the low carb diet that helped me get through the higher doses of Pred and lose weight. She's seen a lot. Also, I do suspect some Qi stagnation in my head from the inflammation in my scalp. If she can get the flow going, my body might be able to start healing. I know it might sound strange but she's quite talented.

I once had tendonitis in my right arm that was not responding to treatment. My right hand started to get cold and my lower arm started swelling. It was getting quite painful. I saw her for the first time then. One session and I could see the swelling start to go down, the warmth return to my hand and it started healing.

[Soraya_PMR]

Take a look at seborrheic dermatitis, possibly caused by weakened immune system and fungus called malassezia (my dog confirms that M infection is very itchy). SD can also spread to other oily skin areas such as chest and back. mayoclinic.org/diseases-con...

My other thought, the headband may have caused sweating and triggered a yeast Candida infection. Many many years ago I had athletes foot, and accompanying this I had itchy spotty legs. Derm didnt pick that up but identified I was allergic to chlorhexidine (the pink scrub solution used in operating theatres) so that helped the awful hand itching. Leg itching didn’t go til I finally clocked the AF and treated that. Apparently you can be allergic to the actual yeast or the toxins they create or somesuch. Anyway AF treated, problem solved. Maybe a spot of canesten behind one ear and see if that helps?

[stonecreek]

I also itch on the top of both ears and behind my ears on my scalp. on 5 m of pred.

[Hindags]

Do you generally have dry skin?

[Rimmy]

Hi Hindags - probably not much help but I was dx about the same time as you so have been taking Pred for about the same length of time although with a couple of GCA flares I am still on 14mg. Abut three months ago I developed a reddish bumpy rash around my midriff and bra line and thought it may be from having hot baths which I love. I ceased those and tried various products which I thought might be anti-bacterial - and they made things worse. Then I tried anti-fungal stuff - also no good. But then I tried antihistamines and they worked really well - the rash disappeared very fast. Hard to say if we have something similar but this is my experience and may be worth a try.

Best wishes

Rimmy

[Hindags]

Which antihistamines did you try? I am taking allegra 24 hour tablets, but don't find much help. A long time ago, 30 years, I got poisoning from xerox toner. I didn't know it was toxic. Duh. Got it all over my hands and just brushed it off until I did a thorough cleansing some hours later. Woke the next morning with welts everywhere the blood had pooled over night. Very itchy. I was given atarax and that worked well. I think I might request that when I speak to the doctor at the end of the week.

I was also thinking of a steam bath or sauna. Something to open the pores and "let the poisons out". Maybe 19th century medicine, but maybe some wisdom there.

[Hindags]

Thanks to everyone with all their good advice and sharing their experiences. I am so grateful.

[Hidden]

I have a periodic itchy problem. Had it twice this year where for a couple of weeks I just could stop scratching. Nothing to see in the itchy parts. I do have some funny patches on my elbows. I had tried HC, E45 on that and I'll the itchy shoulder arms, thighs and scalp. I had a bout a couple of weeks after it started dying down I got thrush and had my usual 3 point attack and I stopped itching, though my feet Extra dry. I sprayed with daktarin and that went. I am not 100% sure it was a fungal thing but something helped.

Since I have bought double base gel. It looks like Italian meringue, but is pumped out as a very light lotion. It's not sticky and once rubbed in you don't know you have it on. My skin seems softer.

[Hindags]

I just found this article. I think I actually have Eucerin eczema in my house. I think I'll try it. It seems to have gotten good scores. Boy things do get complicated so quickly.

[PMRpro Ambassador]

I had something similar early in PMR when I wasn't on pred - turned out to be an allergy to something in the carbohydrate structure of the modern highly commercialised wheat mostly used in the UK and Europe to make pasta and flour. For me it was almost like the rash that is found in dematitis herpetiformis - starting with a deep itch which then turned into blisters.

I can eat other gluten-containing grains including spelt and kamut (also wheats) and the different wheat used in French bakery. On high doses of pred and only eating small amounts I'm OK. The only topical treatment that worked was trimovate - steroid plus antibacterial plus antifungal I think but I can't find it now. But no wheat = no itch.

[Koalajane]

I tried cider vinegar on my scalp and that seems to help.

[S4ndy]

I'll just add my twopenneth

I react to surfactants, the thing they put in products as a degreaser and foaming assister. Its virtually in everything that foams from washing up liquid to high end shower products. Very hard to avoid but I manage and rarely have skin problems.

I began to notice my skin was itching and although it didn't look dry it felt dry. Also where I was itching, the scratches were breaking the skin and not healing.

I explained all this to gp. He prescribed a cream/lotion called Zeroveen (same as Aveeno I think) which is oatmeal based. Well using that has cured the itch. I am still using it after showering too. I was on 15mg pred when this started and am in 6mg now.

[gifford7]

I had an itchy eczema like rash on midbody, that started around xmas after eating a lot of sharp aged cheddar and blue cheese, both loaded with histamines.

Saw my GP and he recommended antihistamine and corticosteroid prescription cream, and to see a dermatologist if it didn't resolve. It finally resolved after 3 mo after stopping eating the sharp cheddar, taking the strongest antihistamine pill Benadryl at bedtime, and

using Vaseline Eczema Calming therapy cream with colloidal oatmeal as active ingredient. The Benadryl also helped me sleep as itching was worst at nite.

I'm now back on sharp cheddar cheese in moderate amounts. Don't know if the sharp cheddar triggered the rash, or whether the prednisone taper caused it, or something else. I do have various allergies. Now tapered to 5mg pred for my GCA. CRPhs=0.7mg/L, ESR=10mm/hr

[Meggsy]

Probably won’t apply to you but thought I would throw it in to add to all the other possible solutions suggested. I developed a very itchy rash which spread over large areas of my body before I realised it was the turmeric I was mixing into a drink I was having daily.

I hope you find your answer. 🌼

[bunnymom]

No suggestions but wishing you well today. Itching is horrible. Hope some of these suggestions are your answer 🥀