Hives?

Hi everyone,

I posted here a while ago because I am concerned I could have lupus (my ESR, 25, and CRP, 34, have been raised for months, my liver ggt is raised but they think that is NAFL, I am often too fatigued for work and have had to go part time, I ache everywhere, headaches, brain fog and memory loss...)

Anyway on advice from this page I brought it up with my GP last month, she checked for protein in my urine which there wasnt any, and referred me to a clinician - I haven't heard anything about my appointment yet though.

However, I have now come out in hives. It started last Tuesday when I thought I had been bitten by an insect. It died down but then yesterday I woke up covered in very itchy hives - my groin area, my elbows and knees being particularly bad. I've changed all my laundry in case, and taken antihistamines, and they've gone down but are still there.

My question is has anyone had hives with lupus/other autoimmune diseases?

[svfarmer]

Hi so sorry your going through this I have Lupus SLE and I regularly come out in itchy rashes, it’s very common with lupus, I take Piriton every 4 hours if very itchy sometimes I don’t even have a rash and are itchy - but if it carries on best to get GP to check you out

Sending hugs 🤗 Sam x

[Hidden]

Hi Adelaida, I have LatentLupus/UCTD, but yes, I have had hives. First started getting them 10 years ago. I broke out really bad (yet again) right before leaving state for my middle son’s wedding and went to an Urgent Care before leaving. I didn’t want to be all rashy in wedding photos. The doctor at the urgent care told me they were bites from little flies (😡) and that I needed a beekeeper’s suit for gardening. Four hours wasted (as well as $$.) My husband and I decided, at that time, that it was stress and nerves because of the wedding. But we had, not long before, married off our two oldest sons, and I didn’t breakout in hives then, so it didn’t make sense to me. The rash got really bad. Little did I know that something bigger was the issue.

Adelaida, my best to you. I hope you get your answers soon. Please recontact your clinician. If it’s been a month since you called them, and you’ve now broken out in hives, maybe you should call again?

[Hidden]

Thanks both svfarmer and Hidden !

I am still covered in hives despite having taken antihistamines for two days now... I actually got a telephone appointment with a GP today, but not my usual one. He basically said that I am better now as my ESR has gone down to 19, and my CRP is down to 24 (still higher than the first set of results that worried them, but lower than Jan tests). Despite me still being too ill to work properly. He also said that the hives were unrelated, and theres no point "going down a rabbit hole" as sometimes hives just happen.

I was so upset I cried my eyes out! I am still being referred to the hospital but he said that might be two months. I am absolutely stuck as what to do - I think if the hives are still bad tomorrow I am going to try to see my usual GP face to face. The hives started last Tuesday so it's a week!!!

[svfarmer in reply to Hidden]

Yes if I were you I would try and see your usual GP - the itching can drive you mad - good luck and let us know what the outcome is x

[AgedCrone in reply to Hidden]

Have you spoken to your pharmacist? They are often a lot more clued up on unusual rashes than spécialiste doctors!

[panda2]

Hi Adelaida,

Hives are not fun, so sorry you're experiencing them.

They were one of my first symptoms. I would have them for 10 days to 2 weeks. This is irregular. Normal hives last 24-36 hours. It took many months of these repeating (and itching like mad!)and of GPs telling me they would go away before one finally listened and ordered an ANA test. That came back abnormal and high. Referral to Rheumatology meant this was taken seriously at last, some 8 months later. But then it was the run around to get Dermatology involved. Eventually, after 2 biopsies and over a year, they identified Urticarial Vasculitis. This is the basis of most of my rashes and it's important information for Rheumatology.

Unfortunately, this is a long process of getting to the bottom of things. I hope you find a more investigative professional to look into this for you. Not easy to live with, I know..

All the best,

Panda

[Hidden]

Hi all,

Just to update - yesterday the hives were worse so I got an emergency appointment with the GP. They've given me some stronger antihistamines, and a cream. I took the first one last night.

However, I have woken up with them worse than ever! Massive patches of hives across my legs torso, arms. There's one on my eyelid, on my palms, my ears and under my hair. It's awful! If anyone has amy home remedies for them please let me know.

The doctor ordered more blood tests - I can't figure one if they've done a ANA or not and forgot to ask - for tomorrow so if it's still this bad I can show the nurse.

Feeling very sorry for myself for being so covered, but I know it could be worse.

Thanks everyone for your help.

Ada

[panda2]

Oh you poor thing... 😩 Glad you're getting more bloods done, but definitely ask about that ANA tomorrow. If it's not on the list, maybe ask if they'd mind ringing the GP to see if it could be added. In my experience, that was the time to find it and it would be required information should all your symptoms be connected. Also, it will take a whole month to get the results back from an ANA.

I found the early patches of hives to be the worst and most agonisingly itchy. I was wearing my sweaters to bed to stop scratching myself through the skin inadvertently. If this is linked to a connective tissue disease, the nerves can get involved exacerbating the itch. Antihistamines did not work for me and the creams did not work either. So, if you are getting a bit of relief from those, that could be a good sign... ?

Doesn't help how you feel right now. Hang in there.

Panda x