Hives: I’m very new to all this and just waiting a... - NRAS

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Hives

Juliehh73
Juliehh73

I’m very new to all this and just waiting a hospital appointment to come through. My blood results came back as strongly suggesting RA could be the problem, but obviously further input is needed.

From the start I have been troubled with hives, firstly thinking it was still a viral type rash, but my doctor yesterday said it was hives, most likely related to what’s going on with my AI diseases - either my current under-active thyroid or my possible RA. Has anyone else experienced this? I’ve never heard of it been related to AI diseases before

Many thanks

32 Replies
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I take a antihistamine every morning to stop me from itching darling.xxxx

Juliehh73
Juliehh73 in reply to sylvi

Thanks Sylvi, is it quite common with RA? I have just had to root around on the internet to find out about it, it doesn’t seem to be one of the top symptoms

Hi I also take an anti histamine every day. For no rhyme or reason some days I get covered from head to toe in hives and it’s reduced me to tears and a trip to a and e!!

It’s under control now but be careful which anti h you take as most make me really drowsy... not what you need on top of fatigue! Have you got any other RA symptoms? ♥️ Sarah

Juliehh73
Juliehh73 in reply to sjhewitt42

Hi Sarah

My first symptoms were what was thought to be viral arthritis, the rash settled, but pain in my hands wrists and knees didn’t other than that I feel unbelievably washed out with on zest for life..... this is how I felt just before I got my thyroid diagnosis too, so it did raise concerns

One of the first questions my Rheumy asked me when I was first diagnosed with RA was if I'd had hives or Hayfever as a child, When I answered "Yes"" he just nodded.

So yes it part of the same Auto Immune family as RA.

Have you tried anti histamine? Ask your pharmacist which is the most suitable for you to take until you see a rheumatologist when you will get more individual advice.

Try not to worry about it......I haven't itched or had regular Hayfever...it just seemed to burn itself out once I was on the right meds.

sjhewitt42
sjhewitt42 in reply to AgedCrone

That’s interesting as I thought it was a side effect of all the meds. My rheumatologist referred me to the dermatologist and sorted my meds out.x

AgedCrone
AgedCrone in reply to sjhewitt42

We are all different...maybe your skin problems aren't allergic Urticaria (hives)....could well be an allergy to meds or even a food allergy?

What did the Dermatologist say?

I recently thought a terrible rash I had all over my torso was a reaction to Rituximab, but after seeing a Dermatologist & having biopsies it turned out to be a Post Viral Rash ....I'd recently had flu. It didn't hurt or itch, just looked really vicious....it lasted about 3 months & disappeared as quickly as it came leaving not a trace.

Hope you get sorted soon!

sjhewitt42
sjhewitt42 in reply to AgedCrone

Hi AC it’s definitely a reaction to meds specifically biologics.. I also get problems with psoriasis in certain areas. It’s always a trade off with RA meds with infections or skin problems etc isn’t it. xx

AgedCrone
AgedCrone in reply to sjhewitt42

Yep.....the golden meds for one can be hell to another.

I was desperate for it not to be a reaction to RTX as it was suiting me really well....so thank goodness it wasn't.

Did your rheumatologist do a biopsy? On my Lab report, in between all the technical stuff it said "99% unlikely to be a reaction to drugs"....so there is still a 1% query.

I've had my delayed infusion, & although it seems to be taking longer to kick in, the really stinging pain in my hands & the all over general malaise is easing & I have no new nasty symptoms........so I'm ignoring that 1% & plodding on!

As I said, hope you find the solution soon.

sjhewitt42
sjhewitt42 in reply to AgedCrone

I know Cimzia gave me my life back for 5 years but triggered loads of nasty infections, hives and drug induced Lupus so I’m now trying to find my Cimzia again. 😖

AgedCrone
AgedCrone in reply to sjhewitt42

I had 7 really good years on Mtx...but it all went pear shaped,& I'm now doing well on RTX...but I'm not complacent & try not to think what will happen if that fails as well.

We could all really, really do without RA couldn't we......especially when the" why do you put all that poison into your system" Critics get started.

I now use very rude words in reply,& find that shuts them up....especially if you use the word ignorant.....that really hits the spot!

sjhewitt42
sjhewitt42 in reply to AgedCrone

Ignorant is definitely the best word to use. I’ve got to the point now where I just sigh to myself as I can’t be bothered to explain anything to people. 🙄

AgedCrone
AgedCrone in reply to sjhewitt42

My best friend & I no longer discuss my RA.

She has no idea what it is & says I am the ignorant one for taking all the meds,& they are what makes me ill...not my out of control immune system.

My wicked consolation is I am size 12 & she is 18+ ...because she eats too much of the wrong foods...but when I used to try to say eat an apple instead of a donut, she told me I was ignorant & apples are full of sugar!

Go Figure! Maybe she's right & apples are my downfall, but until I have proof positive I'm sticking to them.......but I do have the odd, jammy fatty donut! Yummy!

sjhewitt42
sjhewitt42 in reply to AgedCrone

My friends are great (I only have a handful) but I know their eyes glaze over when I talk about RA so I just don’t bother at all. xx

AgedCrone
AgedCrone in reply to sjhewitt42

Just read this post after my previous reply (if that makes sense)?

Before I had the biopsies my Dermatologist muted Drug Induced Lupus, but the biopsy report definitely (well 99%) excluded that.

It went through the reasons why & as I said 99% drug reaction was ruled out.

My consultant dermatologist was very surprised.

If you have not had biopsies maybe you could ask for them?

You don't want to have to try all sorts of drugs unnecessarily.

sjhewitt42
sjhewitt42 in reply to AgedCrone

I’ve been off Cimzia for 2 years now and boy I’m paying for it! My bloods were all over the place and a positive ANA test so I was taken off it and the bloods returned back to normal. Well not normal but my normal. I think there was a problem with my kidneys too...

Now there's a funny thing. I was diagnosed with ideopathic urticaria (meaning "blowed if we know. It's you being difficult") following a biopsy. Only my head, hands and feet uneffected, it was absolutely horrible and the treatment worse. That was 11 years ago and I wonder if it was a precursor to the RD?

J

sjhewitt42
sjhewitt42 in reply to Gnarli

Hi J that’s interesting. I’ve always been sensitive as a child with prickly heat etc. so it may have been that we had a dodgy immune from the start x

Gnarli
Gnarli in reply to sjhewitt42

It's certainly a thought although loads of problems arrived with puberty. I always blamed my father's Irish skin for the itchyness

AgedCrone
AgedCrone in reply to Gnarli

Can you remember if you'd had any sort of virus- cold,sore throat,flu, before the rash?

Although my rash was not urticaria...it was a red/purplish rash....only on my torso ...not on arms,legs, face....thank goodness.

It was not raised, didn't itch or hurt- but looked really, really horrendous. Even the Dermatologist said "Wow now that's a rash" & I guess he sees quite a few rashes.

Personally I had never heard of Post Viral Rash...my GP had no idea,& as my Rheumy referred me to a Dermatologist- I guess he was puzzled too!

The first person to mention it was my Rheumy nurse when I described it over the phone.

The texts books say it appears 10/12 weeks after the virus & disappears after 12/14 weeks....which was exactly how my rash behaved.....

So I just hope I don't have flu again next year...this year was the first time I'd ever had it!

Gnarli
Gnarli in reply to AgedCrone

This was 11 years ago and there were three episodes lasting 6 weeks, 3 weeks and two weeks. Under immense stress at work but I can't remember any viral illness. I only remember it all because my first granddaughter was born during the last breakout. A slightly raised bright red rash which began on my left thigh and spread, alarmingly quickly over my whole body save for head, hands and feet. I looked like scarlet porridge! Being an itchy person post viral rashes and tiredness are nothing new.

AgedCrone
AgedCrone in reply to Gnarli

I think all these rashes etc must be related to our immune systems.

In my teen years I got used to friends saying "Oooh..look,at your face"

Either my eyes were swelling shut, I was covered in a rash or I looked as if I'd had really bad lip fillers(which no one had heard of back then.) Mascara always gave me sore watery eyes!

It could have been any old allergy....one sure culprit was drinking from a plastic glass. I appeared to be allergic to a different food every week ...& swallowed anti histamines like Smarties....some worked some didn't.

My consultant at the time tried desensitising injections....but no matter how small the dose he tried I reacted badly. In the end I just seemed to grow out if it, except the Hayfever which lasted on & off for years....I had Kenalog injection every Spring for many years to help with that.

Then along came RA....& the Rheumatologists who diagnosed me all those years ago asked about allergies & said it was all connected.

I still have the odd allergic reaction ....but as far as I'm concerned they are not too distressing & I can ignore them.

Gnarli
Gnarli in reply to AgedCrone

It certainly gives food for thought. The lack of joined-up thinking and little continuity of care probably explains why the RD wasn't picked up earlier perhaps or maybe just unlucky. Who knows?

AgedCrone
AgedCrone in reply to Gnarli

I have often thought that - although I was lucky enough to have the same Consultant for 20 years.......back in the 1950's there were lots of stories around about being " allergic to the 20th Century".

One "Celebrity" was shown living inside a "bubble" because she apparently became ill outside breathing normal air.

She was looked after by someone who appeared to have dubious medical qualifications, & I can't remember the outcome for her ..but there seemed to be litttle research back then into allergies ...& things aren't much better now.

On the NHS in many areas you can wait years for a referral to an allergist.

Hi Julie, I had a neck operation in February this year. Had to come off suppressant drugs shortly before and after op. Around 7-10 days post op, I had an incredible itch over body accompanied by a red slightly raised rash which appeared randomly on different parts of body. I initially thought I had caught something in hospital! Doctors were baffled! It looked like sunburn at times. Even went to A + E one evening as the itch was driving me crazy and I was covered in this angry looking rash! Was given steroid creams, antihistamines etc. I eventually was referred to Dermatology. Doctor there did tests and asked if I had been given Morphine, Codein etc - which in hospital I had. She said that was the cause. Diagnosis - Urticaria. I have to take two different types of antihistamines twice daily. Rash and itch has thankfully now gone!

Suzie x

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After treatment for Breast Cancer, I started with a rash on my lower back and legs. Had all sorts of treatment for it. Antihistamines, steroid creams etc. I just wanted them to chop my legs off to get rid of the itching. A punch biopsy determined it was Nodular Prurigo but the dermatologist wouldn't prescribe any of the accepted treatments because I'd "had cancer"!!! Showed it my Rheumy who instantly said "That's Vasculitis" and put me on the treatment the Dermatologist wouldn't give me. Rash cleared up within 2 weeks. Bliss

I had chronic Urticaria around 5 years ago which lasted a few months. I’ve been diagnosed with RA for just over a year now x

Hello juliehh73,

I have some experience of hives in the past, because I had chronic officer is for 10 years until my doctor sent me to see an immunology specialist. He put me on several antihistamine tablets and got my condition under control. After several months of blessed relief I woke up one morning with severe pain in both feet and hands. So, I went back to seer the specialist and He just looked at my hands, which were swollen around my joints nd he said, you have cross over rheumatoid arthritis !!

That was over 8 years ago, my rheumatoid is ongoing, but I have not had any more problems with the urticaria. No tightness at all. Of course both these conditions are auto immune conditions, so I'm fact what happened is that the specialist got one auto immune condition under control and my immune system just attacked a different part of my body. I have three brothers and each of them have auto immune conditions.

In your case, if you are being treated for a a rheumatoid condition, maybe the drug/s are not strong enough and so your immune system is also causing the hives.

There are different causes of hives, it could be an allergy to certain foods such as dairy, or perhaps your hives come up wherever your clothes fit the tightest, for instance the elastic in underwear. or it can be the pounding of water on your skin from a shower, or even certain plants in your garden just brushing your arms.

I hope this bit of info is of help to you.

All the best, and take care. June xx

Sorry I just noticed that my word association converted Urticaria to office.

Thank you for you helpful reply. I am not on any RA medication yet. Just waiting on hospital appointment. All bloods done by my GP are ‘highly suggestive’ in his words of RA. I also have a underactive thyroid.

I have just change the anti histamine I was using from loratadine to certirizine, which I’m finding slightly better.

Hi. I have suffered with hives for 15 years now. I was diagnosed with urticaria.

I also have RA and OA. Been on Methatrexate for around 8/9 months now. I inject and do find this helps.

I have hives and rashes which started same time as my arthritis so who knows. Have only had steroid shots but about to start MTX injections. Will see if they clear up.

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