I could do with some of your thoughts and ideas regarding a new and unexpected setback I've encountered.
-Seven days ago (Fri) I got out of my bath and noticed some red pimply marks on my arm.
-Sat morning the pimples had become a visible rash. I saw an out of hours 'prescribing paramedic' who recommended an over-the-counter antihistamine and some Dermal to both moisturise and use as a soap substitute.
-Sun morning...rash was redder and spreading further to chest, hands, underarms, upper legs, and irritation and itching had become worse. I saw an out of hours GP who said categorically it was urticaria and I was having an allergic reaction to something. He prescribed Fexofenadine Hydrochloride-180mg twice a day and said to increase pred from current dose of 6mg up to 30mg for 3dys.
-Mon the rash was continuing to spread and irritation had been very bad during night. I saw my own GP who agreed it was definitely urticaria and to continue with treatment.
-Tues the rash was now spreading onto my back and lower legs and looking redder and more angry so I returned to my GP as the current medication regime didn't seem to be working. He prescribed Hydroxyzine Hydrochloride-50mg for bedtime and said to continue with the Fexofenadine in a morning and continue with 30mg of pred for a total of 5dys.
It's now Thu and although the rash doesn't seem to be any worse today, it's not particularly improved. It does feel quite rough though and like there's lots of tiny little scabs. The itching isn't all over...it comes and goes in different places at different times. Worse in a morning after being in the warmth of the bed.
I'm at a total loss as to the cause of this episode because as far as I'm aware I've not done anything different. I've not eaten anything different from normal. I've not used any new or different cleaning, washing or bathing products and not exposed myself to anywhere or anything different.
I would be most grateful to hear from anyone who's experienced anything similar and who might be able to tell me how long I might expect the rash to continue before some improvement is felt. I thought antihistamines worked relatively quickly!
I've sent a photo of today's 'art work' to give some idea of what it looks like.
Thankyou in advance for any thoughts advice or help offered.
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Kendrew
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Heather I have no idea what that is... but I am sending huge huge huge healing and hope someone comes on and has the answer!!! I am so sorry you are going through this. This disease really keeps us on a roller coaster. ox
Ouch! You have my sympathy - it happened to me once but it was due to an allergic reaction to an ACE inhibitor drug and stopping it sorted that pronto.
It can be an autoimmune disorder - and they do like company.
Just a thought. Although you haven't changed your soap, etc, there is a possibility ingredients have changed. Or that you have developed a new sensitivity. Can you try avoiding anything with chemical ingredients which you don't understand or can't pronounce, etc., for a couple of days? Same with foods. Only eat whole foods with no additional ingredients. It may take a while to track down the culprit, if it is a sensitivity. Years ago I knew someone who developed (more restricted) itching. With help from her husband who kept track of everything she was exposed to they determined it was cinnamon - an ingredient in a herbal tisane she drank every day!
Manufacturers of washing powders are also shockers for changing their formulae. But we found that if you email and ask them, they'll generally come clean( sorry, pun not intended)
Have you recently picked up your medications that are on repeat? Check to see if the manufacturer is different.
The excipients, ( colloquially called “fillers”) may differ from manufacturer to manufacturer.
It could be a Mast cell Activation Episode.
Some fillers may cause your mast cells - innate immune system cells- to act as is the filler is an invading pathogen and “degranulate” ( this is how they “attack” and try to protect you- often releasing histamine.
This is why an “anti histamine” is often used.
Sometimes certain foods can also trigger Mast cell activation.
It can upset a few different systems in our bodies:
1. Skin- urticaria/ hives
2. GI- nausea/ vomiting
3. Respiratory/ anaphylaxis-( think peanuts)
4. Neurological- migraines - think red wine/ chocolate)
It can just develop sometimes- and is seen with Sjögren’s syndrome frequently.
I’d just keep an eye, and likely it’s a one off. If you see a pattern, check you medications first. No need for an exhaustive deep dive at this point- just wanted to make you aware of it in case it doesn’t resolve, or if it comes back. Could it be a mast cell issue?
This would be be “ mast cell” then. But not the actual full syndrome.
MCAS- mast cell activation syndrome.
Dr Tina Peers is you English specialist in this. She’s seeing it now in long Covid.
Sometimes it does happen with autoimmune patients, our immune system gets a bit confused.
Antibiotics cause it- but just temporarily to the antibiotic.
I’m still very confused about MCAS, although I’ve been diagnosed with a pretty serious case of it. ( by a specialist autoimmunologist / rheumatologist.) I had never even heard of it! I was there for my Antiphospholipid syndrome .
Apparently it’s a failure of the primary immune system to have to correct response- not a “classic allergy.” The primary immune system inappropriately identifies and over responds to perceived threats.
A good book to read about this by Dr Lawrence Afrin ( hematologist in ArmonknNY ) called Never Bet Against Occam
There are also you tube videos where he gives talks…
Are you on low dose now? It does seem that allergic reactions and intolerances pop up here in posts in those in single figure Pred doses. I had the same and it went away eventually as my histamine output settled down.
Hi Snazzy.Thankyou for responding. I'd been steady on 6mgs of pred for almost 2mths and was literally about to begin my next slow taper down to 5½mg when this hit.
I used to think that perhaps mast cells proliferated in response to the Pred suppressing the process that produces histamine. Take away the histamine and suddenly you get all those extra mast cells firing away. However, I am now thinking it’s more along the lines of there being not enough cortisol in the system to act as the normal suppressant, when one’s adrenal axis is still out of whack and the Pred dose isn’t quite enough to to do it for you.
Have a read of this about histamine and a very interesting blog on all things mast cell dysfunction. I learned from it that there is can be a type of autoimmune audiosensory attack that can cause hearing loss which the blogger suffered.
Same here when I went below 5mg Pred, and I tick all the boxes for mast cell activation syndrome, which my Immunologist cautiously agrees but he could only offer me Montelukast, Famotidine and Nalcrom (mast cell stablisers). Do you have food sensitivities too? I can't eat anything high-histamine (see my various post over the years)
My then rheumatologist referred me to Immunology as it is seen a lot with autoimmune conditions, but it took nearly 2 years to get a phone appointment, and then Covid struck so I have never seen anyone F2F. Immunologists are even rarer than rheumatologists in the NHS. And in my case, even less helpful in that there is little they can offer and they are dismissive of anything that isn't a classic immunoglobulin reaction/allergy such as nuts. I'm hoping for better luck when I see a dermatologist
I saw a lovely one in Newcastle - but a very long time ago!! Very sensible woman - whatever it was that was causing the problem was going to be next to impossible to identify. Seemed to happen only after certain red wines - so I was instructed to try taking an antihistamine if I was drinking an unknown red wine. It worked a dream! I asked about mixing antihistamines and alcohol - dismissed with a wave of the hand ...
Hi Kendrew - I had this when I was given gabapentin for disabling hip pain (sciatic nerve problem it turned out, not bone etc) The dose was gradually increased until it actually worked - what bliss to be mobile again! But then, absolutely pat, two days later, the rash began exactly like yrs. In the end it covered my whole body, except my face. The itching was a torture - almost worse than the pain I began with. Fexofenadine did work after about a week or so and I was very glad to be free of it! It’s never come back. As to the cause, the only thing I had done differently was have my gabapentin dose much increased (which at lower, ineffective against the nerve pain, doses gave me no side effects) The large dose worked, but at what a cost!
So sorry to hear this, Kendrew! If I were you I'd be contacting my rheumy incase this is by some chance autoimmune connected.Another thing I would suggest is a dermatologist if the condition persists.
My thoughts are with you and I hope this is soon resolved.💐
Hi jinasc.Thankyou for your response. I do take enteric coated but have done for the past 3yrs. Is it possible to suddenly become allergic to the coating then?
Yes, as the 'e' number can change or the manufacturer. Each manufacturer although the contents are the same, make them in a different way.
It is amazing what, this thickhead of mine, took in when GCA arrived and the GP, Consultant and Pharmacist were keen to educate me. Mind it was a two way job as PMRpro will be able to tell you.
Take care.
Drugs can make you ill if even if you have taken them before. I was given pencillin a couple of times with no bother. Then one day (at 60) - an adrenal crisis - yes allergic to pencillin. It can take time to slowly build up an allergy.
Thankyou for saying that and I mean it sincerely because I did feel like my nursing experience (or maybe lack of it!) should have equipped me to recognise such a fundamental point. You're right though...I don't, and shouldn't expect to know everything. Haha!..... and 'senior moments' are always waiting in the shadows. 😄
Yes- film coating polyvinyl alcohol is a huge mast cell trigger. Also- so is dye. Especially reds. My immunologist taught this me this. ( these are excipients.)
It take only a tiny amount to set off a reaction.
I do not have trouble with dye- but I do the film coating.
Hi Kendrew. I had the exact same rash with Alendronic Acid even though I had been taking it for a few weeks. Apparently you can get a reaction to the bone protection meds come on later. It was horrible, I was in fire. But I have never had it since. Also have you looked up dermatomyositis. Other autoimmune diseases present with rashes. Hope it gets better soon.
Thankyou...I do take AA but been on it for almost 3yrs with no issues. So many things could be causing it. It feels a bit overwhelming right now but I'll get it sorted eventually.
So sorry, it’s not something you can easily get relief for. It does sound like an allergic reaction so maybe do some trials. It wouldn’t hurt to stop the AA for a couple of weeks, then try other meds. I was surprised when my dr looked it up and told me you can react even after a long time. Best of wishes.
Thankyou for passing on that information. I rather naively didn't realise you can suddenly develop an allergy to something...even if your body has been ok with it for some time.....and more specifically the AA.Appreciate your comments.
So sorry to hear this. I hope you get sorted soon. I can only add I would also speak to Rheumy and ask for a referral to a Dermatologist also (with a thought to an allergy). With best wishes.
My husband developed a similar very itchy rash 2 days after the 2nd Covid vaccine. The Covid helpline said it was a known reaction & would disappear after 2 weeks. 3 weeks later when it was much worse, &clutching at straws, the GP thought it might be scabies & we both had to be treated for that. 3 scabies treatments later, as well as several anti histamines, several different creams & 40mg pred for a week, my husband eventually saw a skin specialist. He said it was eczema caused by the vaccine altering the immune response (not an allergy to the vaccine). The treatment is- don’t shower every day
- don’t use any soap; instead use something like cetaphil or aqueous cream
-stop using the pinetarsol prescribed by the gp as it dries the skin out
- use a cream called Elocon over itchy bits
- DONT SCRATCH IT; wearing gloves to bed might help
Yours may not be the same thing,but some of the things above may help. It certainly did for my husband who now has only a few itchy spots
Oh poor you, I too get rashes that itch like mad, at it’s worst I also use piriton 3 times a day as well as fexofenadine also a steroid cream, not that any help.
My rheumatologist has now put me on hydroxychloroquine as I’m ANA positive and have mouth ulcers, I’ve read up on this drug and it also helps with raised rashes so I’ll let you know if it helps.
Hope it gets better soon.
Sending a big hug.
💐😍
Looks uncomfortable to say the least, I’m late to comment and probably with a pointless one however……. The first sign of Stills Disease for me was a red lumpy rash on legs and arms but it wasn’t itchy.Hope it’s fading?
Warmth, from a bath, weather or clothing makes itching worse. You may never know what the cause is. There is an idiopathic urticaria that can last a few weeks. Patients often do not continue the antihistamine/treatment so the hives continue.
So sorry you have this - I know how uncomfortable and distressing this can be. I had Betnovate cream and a prescription antihistamine from GP for something similar. Took weeks to go and I now use Avenocream everyday.
Really sorry to hear this & sending gentle hugs. The only time a rash took over my body was when I became allergic to penicillin. I was admitted to hospital & put in isolation it looked that bad! I was 20 & had taken penicillin all my life with no side effects. The reason I tell this story is to show that, quite suddenly, you can become allergic to something new. However, I’ve been allergy tested a lot & suffered dreadfully with hayfever…allergic to 44 things, & those are only the ‘tested ones’! Allergies have changed throughout my life. Just a thought, hope you’re better soon, S x
Hi Kendrew. I had the same last year (all over my body), your picture looks just like the ones I sent to my GP. I thought it was hives but doc said it was just "dry skin"!!! It was all over and itched liked mad especially at night. He prescribed Balneum Plus cream and an antihistamine. It was that bad that I took wet flannels to bed and wiped myself down several times in the night to cool down. It gradually eased over time and I was back to normal in three weeks. I don't think that the antihistamine did much and it simply ran its course. I also don't think it was dietary or an allergic reaction as my diet hadn't changed nor anything else in my life really. Hope you feel better soon.
Hi Kendrew, so sorry you are in pain and could do without any more health problems!My only bit of help is that about 4 weeks before Christmas I developed a rash under my boobs on both sides and the GP I first spoke to said it was shingles and prescribed some cream. The itching and soreness got worse especially overnight and I eventually, after a lot of insistence, saw a GP in the flesh just before Christmas. She said it was a fungal infection, shingles would have developed only on one side but they were similar to look at. She prescribed a totally different cream which gradually cleared it up. I still get occasional discomfort and itching in the morning heat and sweat don’t help. With your rash being all over it probably isn’t fungal but it sounds like it gets worse with warmth and moisture so behaving like a fungal problem.
Hope you find out what is causing it soon and get it cleared up.
Wow, I thought you were writing my story there, Kendrew, as this was me about 10 days ago!! I have to say that I have a very sensitive skin anyway and had different areas of itching over a few months.
However, about 10 days ago my skin thought it had been attacked by something and I, too, had symptoms which you show on the photo. My GP diagnosed Uratica (over the phone of course) and I had no explanation re change of food/washing products etc, so I kept a food diary. It gradually subsided and now there’s hardly any sign of it. I eventually put my episode down to having some non-alcoholic wine the night of the attack, but who knows? Moral of that story is: stick to normal wine🤣
I do hope your symptoms soon ease, Kendrew, it’s not much fun, is it? I find that wearing cotton garments helps enormously and when I do get an itching episode I often put a cold flannel on, then the Dermol lotion.
I still say that it’s too coincidental that my skin problem occurred when we had a water softener put in, but it’s supposed to have the opposite effect on one’s skin.
Sorry for the long ramble but hope you get some progress made soon.
You poor poor thing! That looks and obviously feels horrible! You must feel like you want to strip and stand out in the frost (don’t try it). Can’t help, just sending supportive thoughts ❤️
I get this a lot one of many symptoms that I put down to mast cell or histamine issues. I cannot have a hot bath or go in the heat/sun. I am also very sensitive to chemicals so have to use things like odourless simple soaps and have luke-warm shower. Mine came on a few years ago when I reduced steroids and is now under control again but only as I am on high steroids (17.5) . I have tried every anti-histamine going including Fexofenadine. The only thing that worked for me was topical steroid cream applied to the rash, might be worth asking your GP for a try. I had a phone appointment with an Immunologist a few years ago who said it was 'spontaneous urticaria' and prescribed the fexo and have finally managed to get a dermatology appointment at the end of January to get a 2nd opinion. usually it's my lower legs but I have had it on arms and trunk too.
Hi Kendrew so sorry you are experiencing this but like Tango I was diagnosed with spontaneous urticaria after a similar reaction when I had a steroid inject. I had had it previously to that and started going down the food allergy route. Wine, dried fruit seeming to be the culprit. I did a lot of research at the time as the GP seemed clueless having tried all manor of things. Urticaria can be caused by a virus or also by mild infections particularly dental ones. I had a tooth remove and thank goodness my reaction to wine and dried fruit went away, I am not a big drinker but not to be able to have a glass of wine once in a while made me 😔. It makes you feel ill as well as the horrible itching, stomach pain etc as your body reacts as if has been poisoned. I hope you get some relief soon it is horrible our skin is so important and when it's not right we feel awful. Sending all the best wishes, I hope this is helpful. X
Hi Kendrew, so sorry to hear you've been thrown another obstacle. I have no idea what it may be but sending you big hug and hope you find a solution soon. Please keep us updated.
I had two episodes of what looked exactly like yours in the summer when I was on 4.5 mg. steroids. Happened out of the blue and developed within 40 minutes. I may have come off antihistamine too quickly which resulted in the second dose but it was truly awful. Dr described it as 'blanching maculopapular rash covering forearms, trunk and legs' (face unaffected) Only suggestion was allergy to Methotrexate which I had just re-started (now stopped again) but unlikely, as I had taken it for weeks previously. I searched and searched for other causes but drew a blank. I send my heartfelt sympathy and hope it goes soon.
Hi KendrewIn the past I have suffered from 3 full body urticaria attacks which took ages to clear up. I was eventually referred to St Thomas's and was seen by Dr Kobza Black. She identified the cause ~ NSAIDs! ~ anything cotaining aspirin.
I have not taken NSAIDs or suffered with urticaria since.
I am so sorry for you. Last June I had a similar incident but less severe than yours. It happened four days after a caudal epidural, multiple facet joint injections and a nerve root block. Basically, I was full of steroids. Various creams and antihistamines made it better but it did not entirely go. Just after Christmas I had a badly infected toe which was treated with a week’s course of Clindamycin and Fucidin H cream. Not only did it cure my toe but all the spots on my legs too. I had an appointment with my rheumatologist last Wednesday and asked him whether I could use the Fucidin H on my remaining spots. He agreed and I am now treating my face and upper chest. Both are improving. You never know, antibiotics could be the answer for you too. Good luck!
I’m sorry Kendrew that you have been afflicted and have been suffering so much.
I had very similar symptoms nearly 30 years ago and your description brought back memories of such a horrible time, just dreadful. I went privately to a dermatologist who said it was “probably urticaria” and prescribed antihistamines. Interestingly a colleague was afflicted at the same time and our boss even had the water tested.
Certainly bed time was the worst – I used to warm up in bed, throw back duvet to cool mattress down, go to bathroom for a cold shower, repeat, repeat . . . I learned to wear the lightest cotton nightie I could find.
It eventually burned itself out but I had investigated food, washing powder, soap etc in the meantime. I even used Ultrabase instead of soap on my face. Even now a after every shower I cover my body with Ultrabase. You have my sincere sympathy but it will pass!
So sorry to hear that life has chucked you another curve ball. Just when we think we are going in the right direction something comes along to knock us off our perches 🦜. I do hope it clears up soon and you start to feel much better. Sending hugs🥰
So sorry to hear and see the next thing you have to deal with, it looks so sore.
Unfortunately it seems that once we get one autoimmune we seem susceptible to others as well as perhaps becoming allergic to things we previously were okay with.
I started with an under active thyroid, then had an allergic reaction to diclofenac, which I had previously taken for a number of years. Then developed rosacea and Reynauds.
Next was something similar to your urticaria, but concentrated mainly on my face and chest. Doctor did the blood allergy tests and I spent lots of time and energy excluding foods etc and generally being miserable. I was referred to a specialist who said absolutely not an allergy and that it was stress induced. Hearing that, eating normally and feeling relieved the hives cleared up. So as an alternative, I’d advocate treating the symptoms, but do nothing else and see if it clears up on its own.
I didn’t think I was particularly stressed but next came PMR 🤪🙄 and then I realised I had been in a permanent fight or flight mode so have been working on that and feel so much better.
Thankyou. I think you're correct in that sometimes, instead of racing around in a frenzied state looking for the answers, it maybe pays to just sit back, go with the flow and just see what transpires. Obviously this doesn't work for all situations but maybe I just need to let things move along at their own speed whilst just keeping a watchful eye over things.
My doctor diagnosedthis rash as Pityriasis rosea, a virus, which has taken hold because of the steroids inhibiting the immune system. Apparently, most of us have this virus, but it is usually kept at bay by our immune system. I have had this since beginning of December 21. The itichiness went away fiarly quickly and the rash continued to spread but is now less 'angry'. I'm told it will get better, over a few more weeks but there is no medication other than to reduce the itchiness. I find if I don't rub or scratch it doesn't bother me much unless I look in the mirror!! I hope this helps. You are not alone.
Being aware that our immunity is so compromised makes the most innocuous symptoms seem quite sinister. I won’t list mine but I’m currently feeling under siege with minor symptoms/ infections that could herald something worse. I almost long for the simple days when I just had PMR, carefully managed by the appropriate dose of Pred. ☹️
So sorry you are suffering so much. It must be unbearable. I had what was described as "chronic idiopathic urticaria" a few years ago. But it didn't look like your rash, more like the stinging nettle rash you get when first stung, like in Doraflora's picture. It wasn't there all the time, but would come and go, and was confined to certain parts of my body which were hotter and sweatier, e.g. between my thighs, underarms etc. I also could tell when it was coming on, as I would get a strange electrical feeling through my body. I was prescribed high dose loratidine to take daily by a dermatologist. This stopped it completely. She said it would either last 20 years or 1 year and to try stopping the pills after a year. I did this and it never came back. To me, this looks more like an allergy.
Hi I was diagnosed with PMR last April and similar thing happened to me though you have lots of my sympathy as I think you have it worse. Exactly same as you mention and got itchier after a bath. It went away in 2-3 weeks but the Dr did give me strong antihistamines - didn’t take many but helped normal ones had no impact. Get well soon
has there been any improvement yet you poor thing?
Are you having any other symptoms starting to pop up like a sore throat , fatigue or a temperature?
If it hasn't improved , or it is still getting worse I would suggest you call the GP and ask to be sent for a proper investigation and diagnosis from the Dermatology department .
Even if it is what the GP is treating you for , Dermatology are usually better trained in identifying the underlying cause, or they know which medications are more appropriate for you with your particular health issues and medication combination.
They often have better suggestions for creams or lotions that you can use through the day to reduce the itching while it lasts too.
these things can take time to respond to any treatment , and often gets worse before it shows improvement as the body needs to get all of the inflammation and activity out first before the healing begins. I'm glad to hear it sounds like you are on the mend , it's just a shame you haven't been able to detect the exact cause so you can avoid it in the future.... but with skin issues we'd often need the power of Mystic Meg or Sherlock Holmes to work it out . Take care , bee x
Hi Ken drew. My daughter developed the same thing after her Pfizer jabs. She saw a dermatologist yesterday who prescribed the same medication. It's made her life very miserable over the last few months.Hope yours doesn't last long.
If its any consolation, my rash seems to be improving now so the meds are hopefully working their magic. I found wearing light, loose clothing (no bra) and bathing in warm (not hot) water has helped. Dermal has worked for me....it can be used as a soap substitute and then as a moisturiser after bathing on towel- dried skin.
You have been given a lot of good answers and things to follow up.
Just wanted to add to consider asking your rheumatologist if you can be tested for anti-C1q antibodies and exclude a diagnosis of urticarial vasculitis/syndrome. As PRM pro rightly points out, the rashes could indicate something else autimmune going on and a rheumy might want to try you on something like colchicine. Your rash is similar to the rashes I got with UVS before treatment.
Fingers crossed that it clears up by itself and never bothers you again 🤞🤞🌻
Thankyou for your advice. I'll definitely be discussing that possibility when I see the rheumatologist in two weeks. It is beginning to clear up now thankfully but we'll see how things progress from here.
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Disappointed 
Itching
Update on post re Flare or Muscle Pain 
