Had virtually no hive and then bang smothered head to foot

Had virtually no hive and then bang smothered head to foot. Did nothing different ate nothing different. This illness is a joke it’s got to be. Doctors today increased the medication. Fingers crossed


Discussion


Amanda Jane Brenner Same thing with me today, no explanation put it down to hormones there definitely seems to be a correlation is this possibly the case for you?

Sandra Aaron Weakley It can actually take our body up to three days to respond to something. Anything different the two days prior?

Melody Matthews Sadly, that is the nature of this beast. Clear one day, then covered with hives the next. Honestly, after three years, I’ve tried everything except Cyclosporin. Prednisone is the only thing that really helps, but I call it the “devil drug”. Wish some of these well educated immunologists could do more research and come up with some treatment that works. Not much new in the last few years. Come on! We need some help here!

Melodie Banknell Deacon Another thing I find interesting is that there are so many different “looks”. Mine look just like this, under the skin, never raised, but itch and burn like crazy!

Elsie Stoeckel I have both versions. Some on my legs are raised red spots and look like these. The ones on my back are really big with sort of white centers and burn. Are these all hives?

Lynn Myers I have blister type lumps and these it changes hour by hour and minute by minute nobody understands. And that’s what makes it so upsetting . No ideas tried skipping high histrrmine but no difference. Then you think it’s sorted and hey welcome back

Debra Branan Shiflet I was peri menopausal when I first got CIU. When I asked about a correlation the Dr looked at me and said NO. Well to this day, I still say the hormone thing and hives are related. My first bout lasted 4 years; during that time I had a case of mild CHF (had had years earlier after giving birth) and I developed vitiligo. When I discussed these issues with the immunologist, I just get “looked” at…I really believe they are all related somehow and triggered the hives and angioedema. Also, I find (as above stated) I do have triggers that can be a few days delayed — not all my flare ups are instant.

Rhoda Young Debra, my CIU also started when I was peri menopausal.

Amanda Jane Brenner How odd!! My dermatologist supports me completely in my theory of the hormone correlation. He can’t dent the simple fact that every month at the start of my menzies I get the rash worse than ever he says there IS a relationship with menopause and one of the initial triggers for mine was the removal of the Mirena coil (don’t get me started on that horrible thing!!) Have seen many other ladies on here with hive hormone relationships. ARGH! I just wish there was some concrete evidence. It would be great to get everyone here together and to do a huge study. The one thing I DO know is that we know our bodies better than anyone!!! I spent months being misdiagnosed, being told I was just anxious and being looked at like I know nothing. To the point i was referred for chronic health anxiety counselling!!!!!Turned out in the end I was right! There was something wrong!!!!! I totally agree with you in the fact that there is not a single cause, but very often a combination of things usually including some type of stressor be it physical, emotional, hormonal or environmental.. how I wish we could find a simple, side-effect free solution!!

Rhoda Young Wouldn’t that be great Amanda. There’s a few things going on in my body it seems. Got appointment at the Respiratory clinic next Thurs to investigate why I’m so breathless & whatever showed up on my x-ray.

Debra Branan Shiflet I have only been on here for a few days, I am surprised there are so many of us suffering this, for years I thought I was the lone ranger. Everyone wanted to help .stop using this soap, try a different toothpaste, maybe you are terribly stressed, you must have inhaled a chemical, are you sure you haven’t been touched by Poison Oak, you know the “litany”. I am sorry to see so many in pain and discomfort, because we know how debilitating this can be. I wish too, all of us are seen and heard and someone or group out there can figure out this mystery!

Amanda Jane Brenner Rhoda Young good luck with the clinic next Thurs! It’s one of those awful catch 22s on the one hand you really don’t want anything to show up, but on the other at least if something does it gives you an explanation of your symptoms.. had the same thing with a cytoscopy last week all clear thankfully! Some strange anomalies going on, but nothing to be worried about apparently. Do let us know how it goes if you feel like sharing! Hope it’s the same for you! Debra Branan Shiflet I have to say I have found this group amazing. Both the support I’ve been given by so many kind people who REALLY understand and in being able to offer support wherever I can. It sort of gives the whole thing a bit of purpose at least. I’m so insanely thankful that whenever I need a rant, or a moan or a grumble there are dozens of lovely people to make me feel so much better. I am thankful for all the advice I have received. It’s such a great help and not the ‘helpful’ type of help, but good solid advice and a hundred shoulders to cry on.

Rhoda Young Thank you Amanda. Will keep you posted

Melodie Banknell Deacon I too, keep getting “suggestions” . My first break out was 2 years ago. I’m 66 years old and never had anything like this before. I was on several meds for very severe allergy/asthma issues. I am confident my immune system is in shreds, based on the several years of health issues. The Plasmapheresis treatment someone mentioned in another post sounds very interesting to me, but I’m sure finding a doctor who agrees will be all but impossible.

Roxanne Bee I think I have suffered every kind and type of hives heard of. 🙁 these pesky little ones are awful Well all of them are beyond awful.
As far as Prednisone goes. I always suffered super hives after taking it 🙁 I’ve been tempted to epi myself when I get hives alone but then I get threatened with the ER and don’t do it.

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