. Jan 2021 and I was reasonably healthy for my age. ( ancient !) but suddenly developed some mega active itching in both of my legs - mainly below knee,- this turned into lumpy crusty red areas which were so sore and painful. scratching was such a no-no but unavoidable which resulted in a hot burning sensation, ( it hurt !! ) obviously went to see my PG 0 I say " see" very loosely it was Covid time - but he tried his best with face time etc, at one stage I even had to take photographs to send to him and he forwarded them to the Dermatologist to see. rash then developed on both of my shoulders ( I gave up on trying to photograph that lot !) We tried everything under the sun . Dermo finally prescribed some Steroid cream which did seem to clear it up although the marks in the areas it was are still there today.
Forward to today, after getting a firm diagnosis of \PMR ( Plus various other diagnosis ,sorry sp for multiple of Diagnosis ! ) and just slowly ( oh so slowly ) chugging along , yesterday The itching was back in the exact same areas as before etc I am NOT happy, but going with the flow !BUT am now wondering - as we never did decide on a diagnosis for the rash if this was the precursor of my PMR although the PMR was not diagnosed until the following August
Has anyone else had this problem or am I unique !!!! I am just curious really
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seamaid
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Not quite like that - but I did have a rash that was very like dermatitis herpetiformis and could be controlled by avoiding wheat (strangely, I can eat spelt and kamut without problems).
Dermatitis herpetiformis (DH) is a chronic, intensely itchy, blistering skin manifestation of gluten-sensitive enteropathy, commonly known as coeliac disease. DH is a rash that affects about 10 percent of people with coeliac disease.
It isn't due to gluten so not coeliac but it is an allergy of some sort to something in the structure of wheat starch - I react to products from Juvela in the UK which are made with wheat starch which is chemically washed to remove the gluten.
In the meantime, on higher doses of pred (above about 12mg) I can eat wheat products without payback so assume the pred is controlling the allergic response.
had not thought of that ! actually I had forgotten about it until it is starting up again, exactly the same places and the feeling and texture of it . it is only just starting but am wondering if I could use some of the cream / ointment I had the last time which the Dermatologist prescribed for me.- could be OOD - I do have a telephone call booked with my GP on Wednesday to discuss the results of some tests done on my kidney if I can get a word in edgeways I will, -he can talk the hindleg off of a donkey -
Morning Seamaid, well you are definitely unique, as we all are. Looking at your post it looks like the itching went away with steroid cream, so taking the Pred for your PMR has presumably given you the same effect as the cream and as pro says dropping the dose of Pred may have brought the problem back. In theory trying your cream again should/could be successful, but do check the date. Can't see why the doc shouldn't give you a repeat prescription if it worked well last time. Hope you get it sorted soon.
Had you had a Covid vaccine before the itching etc started? I’m asking as my husband ( who doesn’t have PMR) had similar symptoms to you that started about 2 weeks after the 2nd vaccine. After about 3 months of continuous itching & burning rashes, numerous creams & anti histamines etc, he saw a skin specialist, who said it was the body’s immune response to the vaccine. He was told to stop washing in the horrible smelly pine tarsol he’d using, & to not shower every day. He was also given a cream to use instead of soap. This worked. He had no reaction to the 2 subsequent boosters
I had not had the Covid vaccine until after all this had been going on for quite a while . I am certainly curious now after it was pointed out my Preds are now being reduced to a lower figure- - started at 15mg now 7.5 mg tapering to 7mg- I hate the preds but do have to admit they are my best friend . I shall never forget the pain I was in ! I guess we all feel like that
I had this, plus on the backs of my hands and various other odd places for about 9 months around 12 years ago (long before my PMR). GP had me using various creams but eventually referred me to dermatology where they did allergy testing. Result, I’m allergic to fragrance mix - anything perfumed that I inhale - household cleaning products, make up, air fresheners, cologne, bath & beauty products etc. Removed such things from my life as much as possible and it had all cleared up with 2-3 weeks. Very occasional minor outbreaks since - you can’t shut yourself away from public places, shops etc but nothing troublesome. Interestingly it completely disappeared and I could use perfume while on pred, but it crept back in again when I got down to about 3-4mg daily (now on 1mg) so back to being vigilant again.
I'm also allergic to fragrances plus many volatile compounds like paint and paint thinner, petrol, plus tobacco smoke and wood smoke. Rather than skin rash I get migraines and trigeminal neuralgia, plus brain fog and word salad. All of this was 20 years before PMR or any other autoimmune problems. I do also have psoriasis happening on my bald head and some on my arms. That also predates PMR by a few years. I noticed that when I first started on 20mg Pred for PMR the skin problems went away. Up until then I thought it was just old age but the change prompted me to ask a dermatologist about it. Now I'm on Elocon corticosteriod cream weekly and Cetomacrogel & Glycerol cream daily. That keeps it in check. Back in August when I had an increase 5 mg to 20mg for two weeks my skin condition improved.
For anybody interested in the effect which fragrances have on some of us, I recommend "The Case Against Fragrance" by Kate Grenville (2017). She is a well known Australian author of fiction and should be of especial interest to our fellow ANZACs. 😉
Hi PMRpro That was a good thought but, no , I have never ever had any skin trouble before I cannot even remember have acne as a teen ager ! I think I will have to put it down as one of life's mysteries,, my GP is phoning me on Wednesday about my Kidney so , if I can get a word in edgeways I will mention it , so far the ointment I have from the primary session with it is keeping it calmed down , but it is still lumpy so will be having a discussion about this before too long . luckily I have a very good GP .
A little amendment and apology. I should have gone and looked up the diagnosis of my skin condition. I went and checked the dermatoligist's notes the small itchy bumps in my scalp were acutally Asteatotic and neurodermatitis scalp ? plus Underlying actinic damage. So more of an Eczema than Psoriasis as I uderstand it. That was Feb 2021 and lots has happened since then...
The other disease in the differential diagnosis of PMR I completely forgot was Parkinsons. My fathor had Parkinsons and I've got internsic tremors so all the medical people I see pay close attention. I only remembered having looked at the excellent differential diagnosis link thanks to HeronNS
Interesting question. I certainly haven't shown any of the joint pain, stiffness and swelling over the past 3 years. Is it something I should be concerned about? I haven't had much luck with Dr Google looking for the differential diagnosis details.
When I was first diagnosed with PMR my GP started me on 20mg Pred and sent me to a Rheumatologist for a second opinion and to rule out the involvement of something else. There was a wait for the appointment. By that time the 20mg had cleared up the small psoriasis problem on my bald patch so it wasn't top of mind. 😉
The Rheumatologist did a comprehensive battery of bloods and a took a long history and physical exam. She was particularly looking for any hint of RA because my paternal grandmother was bedridden with RA and I was reporting some issues with my left hand around the base of the thumb. But I'm not sure what else she might have been looking to rule out.
I'm no use for pedigree analysis because on the male side I'm an only child, my father was an only child. The other 3 out of 4 grandparents died before I was born. On my mother's side she had a brother who had no children. I have one step daughter. Maybe that's how I ended up doing genetic epidemiology. I was in search of larger samples. 😀
I've had no further issues with my left hand around the base of the thumb. It probably was just a sprain or overuse which is how it was treated at the time.
Thank you HeronNS I have just had a quick look and will definitely be reading this properly later , it is so interesting, Best Wishes .
note my diagnosis is Stills Disease which manifests as RD for me. I’m medication free apart from pain relief. I have associated AI things like interstitial cystitis and Lichen Sclerosis . For years I’ve had strange skin growths and rashes. GP not interested but I’m using the steroid cream for LS very sparingly in the itchy, sore, blisters that bleed then form into growths and it gives relief and reduces the thickness of the growths.
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