Unexplained “rash”: I’m currently into 6 years of... - PMRGCAuk

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Unexplained “rash”

Janann25 profile image
23 Replies

I’m currently into 6 years of PMR, having had my fair share of ups and downs, and am now on 3.5mg of Pred, which the Rheumatologist thinks will be necessary for a while. Other than that I’ve been in reasonable health. But a couple of months ago I had to have a biopsy on a lesion on my back. Whilst the doctor was doing this he noticed some marks on the back of one of my legs but said he couldn’t comment until the biopsy results were back. But he did prescribe a rather strong steroid cream. Then a couple of weeks ago I was very relieved to receive a text to say,” not cancer” but unfortunately it didnt comment on the rash - which has now spread all over my arms and legs. It just said to continue with the steroid cream. Of course, there’s no follow up appointment planned with the dermatologist but I managed to get an appointment with a locum at my surgery. The doctor just said it isn’t contagious and she didn’t know the cause of the rash but to continue with the steroid cream. So - and I’m sorry for the long rambling post - I’m just wondering whether anyone else has had this and whether it could be another version of the autoimmune illness? I’m very loath to keep using the steroid cream because my skin is already very fragile from the long-term use of Pred and I really don’t want to add to this if at all possible. Oh, and the doctor today said I should really discuss this with the dermatologist but has no idea how long it will take to get an appointment!

So, I’m just wondering whether anybody else has experienced something like this and, if so, whether they’ve received a proper diagnosis. Also, I would appreciate any advice about suitable moisturising creams because I now have to moisturise three times a day and the NHS can’t afford to prescribe it!

Many thanks.

Jan

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Janann25 profile image
Janann25
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23 Replies
Temeraire profile image
Temeraire

Hello there. I developed Psoriasis a year after PMR. (Am into my sixth year now on 6mg pred) It seems common that if you have one autoimmune condition you develop another! In my GP practice there are 2 doctors with special interest in skin and one of them diagnosed it. I use daily moisturiser too and am prescribed Epimax which I find good. Easy to apply without dragging skin and sinks in quickly. I do have steroid cream for flares but only use occasionally. I would ask your GP to prescribe moisturiser and refer you if nobody can diagnose. Good luck. Skin conditions can be debilitating. I know how it feels.

Janann25 profile image
Janann25 in reply to Temeraire

Thank you very much for your really prompt reply - and interesting to note that as I suspected, this could possibly be related to an autoimmune illness. I’ll look into the costs of Epimax - the doctor was almost horrified that I should ask whether any moisuring cream could be had on prescription !

PMRpro profile image
PMRproAmbassador in reply to Janann25

Don't see why - Doublebase and Diprobase are regularly supplied for eczema.

Janann25 profile image
Janann25 in reply to PMRpro

It’s really odd - I asked in the chemist for Diprobase and she said she would order it in for me to buy. She already had some in stock but they were reserved for prescriptions! Obviously each doctor/surgery has its own rules as to what they prescribe 😳

PMRpro profile image
PMRproAmbassador in reply to Janann25

I would try a different GP in the practice - it may be a personal thing

Janann25 profile image
Janann25 in reply to PMRpro

My feelings exactly - I’ll try next week

SheffieldJane profile image
SheffieldJane

I used E45 cream plus a low dose steroid cream no more that 2% as and when. My doctor gave me a massive tub of the plain base cream. It kept it at bay and was naturally confined to my feet.

Janann25 profile image
Janann25

Thank you so much. Unfortunately, this is all over my arms and legs, plus my upper chest and back. And it’s now started on my forehead 😞 The cream for my forehead is 1% hydrocortisone cream while the stronger one is still 1% but has got other ingredients which gives it a potent label. I think I’m going to have to push really hard to see the dermatologist - I just don’t understand why he hasnt arranged a follow up.

JoLou12 profile image
JoLou12

I also have developed a rather extensive itchy rash over the last 9 months (scalp, face, chest, arms, back, stomach and tops of legs) I am on .5mg of pred. My doctor prescribed lots of different steroids ointments, anti histamines and moisturising creams without success so he finally agreed to refer me to a dermatologist (I asked 3 times!) who I saw last week. He gave me stronger steroid creams and a protopic for my face. I am having a biopsy in two weeks time. The next option for me to consider is increasing pred or starting methotrexate, neither of which I want to do so I hope the latest creams work. I get all my moisturising creams on the NHS, mainly Doublebase and E45 itch relief which really helps. Good luck with getting it sorted x

Janann25 profile image
Janann25 in reply to JoLou12

Thank you

Ozziedays profile image
Ozziedays

I had something like this some years before PMR, back and forth to GP, eventually got a dermatology appointment for allergy testing that found I was allergic to fragrance mix. Had never had any sensitivity before, it just appeared. Removed all fragranced products from my house and life and it had cleared up within a couple of weeks. The areas that had become weeping sores took a bit longer but eventually cleared.

Obviously I can’t avoid fragrance completely in public areas so I get mini outbreaks from time to time. I use Zerobase to keep at risk areas moisturised every day, and Betnovate steroid cream if I feel an itch starting - a bit like cold sore cream, zap it when it starts was the advice from the dermatologist. That keeps it at bay, a 30mg tube of Betnovate has lasted me over two years now.

Janann25 profile image
Janann25 in reply to Ozziedays

I’d wondered about an allergy but the doctor was adamant it wasn’t. I’ll just have to keep pushing for a referral.

PMRpro profile image
PMRproAmbassador in reply to Janann25

You could buy some loratidine from Lidl - cheap as chips - and try it, see if it helps.

PMRpro profile image
PMRproAmbassador

An excellent emollient choice are the Doublebase or Diprobase products - they are the ones used by the NHS for eczema and not too horrendous in price last time I looked as they come in large tubs which last for ages. You should use them instead of soap products, including applying the cream after your shower WHILE THE SKIN IS STILL DAMP to retain the moisture. In fact - other than shampoo I don't use anything on my skin that foams - all that does is strip the natural oils out of your skin which then needs to be replaced. Water in the shower does a good enough job of keeping us fresh and clean - and once you stop using soap your skin flora recovers back to what it should be and you don't develop BO - almost always due to using chemicals on your skin.

Janann25 profile image
Janann25 in reply to PMRpro

I took your advice some time ago and stopped using any type of “soap” in the shower. But as you will see from my previous reply to you, I’m having a battle to get any cream/lotion - moisturising three times a day will get very expensive.

Yellow-dog profile image
Yellow-dog

I once had something like that on my feet. My gp initially gave me steroid cream and the rash got worse. I eventually found out I had cellulitis , a bacterial infection which needs to be treated with antibiotics. Apparently steroid cream actually feeds the Infection. Look up cellulitis and see if this is anything like the problem you have. I was so glad that I found out because the gp seemed to have no idea.

Janann25 profile image
Janann25 in reply to Yellow-dog

Your reply reminds me that these red marks started at the same time I had cellulitis a couple of months ago - but of course I saw a different doctor on that occasion and I find that GPS nowadays don’t seem to check for previous history. When and if I get a referral, I’ll definitely mention this. Thank you.

BadDancer profile image
BadDancer

Hi,

I developed a non itchy rash which spread all over my arms and legs. As I’m under the care of a dermatologist (for skin cancer a while back) she did a biopsy and it came back as a form of cutaneous vasculitis. I was prescribed 2 weeks of a strong steroid cream and it disappeared. I’ve only had it twice. Imagine as it’s to do with inflammation of the blood vessels it might be connected with PMR? Hope yours settles.

Janann25 profile image
Janann25 in reply to BadDancer

Thank you. My biopsy results came back as a text message and said “no further GP action is required “. Doesn’t really help does it!!

PMR2011 profile image
PMR2011

given the extent of body coverage by the rash I would wonder if it’s related to an allergy of some sort. Did anything change before it started ( diet, medicines or environment?). Even same surg but different company could mean different drug additives. Hope you figure it out. Best moisturizer I’ve found is Body Butter by Waleeda.

Janann25 profile image
Janann25 in reply to PMR2011

Thank you - I’ve wondered myself about an allergy.

Pris80 profile image
Pris80

I developed an itchy rash with flaky skin after being given a high dose of ibuprofen to get me over the first couple of weeks after a total knee replacement op. That was 18 months ago, and the itching has eventually subsided, but the flakiness is still there. I tried every moisturiser I could find, prescribed or otherwise, but nothing has worked. Recently I've found that a little of the virgin olive oil that I use in my cooking and on my salads does just the same job. I even use it on my face as a moisturiser although the rash didn't affect that.I really didn't like the idea of constantly covering my skin with paraffin which seems to be the main ingredient in the ones the doctors recommended. At least olive oil is a natural substance that has probably been used as an emollient for centuries! Just sayin'!

Janann25 profile image
Janann25 in reply to Pris80

Thank you. You’ve reminded me that my mum used olive oil and had beautiful skin.

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