Hello everyone,
I am hoping this group can help me try things I haven’t or would never have thought of to get some answers! It’s a long one..

2 years ago, i suffered with severe hives for 18months until I collapsed with appendicitis. While having my appendix removed, they found fluid/blood on my pelvis area and removed that also..funnily enough, I went into surgery covered in hives and came out with none. I haven’t had them for 2 years, until 8weeks or so ago. I now have them 3-4times as strong, I ended up in hospital nearly anaphylactic (they gave me 50mg phenerghan, 50mg prednisone, 40mg loratidine, panadol & neausea tablets + adrenaline needle- epipen) this then took 20-60minutes before my breathing came back nearly at 100%. My heart rate/ blood pressure in this time kept maxing the machine.

I have been on 50mg of prednisone for about 5weeks before being changed over (and change of doctor!!) To 1 x 40mg ausfam, 1x 10mg loratidine, 1 x 50mg cyclsporin sandoz, 1 x 200mg plaquinel, 2 x 5mg prednisone (all morning) at night i take..1 x 10mg loratidine, 1 x 50mg cyclosporine sandoz, 1 x 200mg plaquinel, 1 x 10mg deptran. I am slowly weaning down off the prednisone each week. However 10mg and under is a struggle. There are days I have been taking 25mg+ or the hives wont stop. If I stop the medication or take it at a different time, I’m covered from head to toe.

I am finding no relief from all of the above! I still have breakouts. Some days I wake up in a world of my own headspace and out of it. I feel like crap! My hair is now falling out and my nails are brittle. I have days where everything swells, especially if I apply pressure by sitting on a hard surface or simply crossing my legs or wearing tight clothing. Too much time in the sun makes me spew (im guessing a side effect from all the medication). If i have a massage or chiropractor appointment, im in so much pain afterwards my joints all swell.

My overall Ige level is 684. I know that im allergic to shellfish and anaphylactic to prawns (I dont eat them anyway and avoid foods that may contain them/be cooked with them).

Due to having the adrenaline, im on a wait list to see the immunologist in January for the skin test. Ive had chest xrays, abdominal & pelvic ultrasounds (pelvic both internal & external). Im booked in for a laparoscopy in 2 weeks time and an endoscopy/colonoscopy in early February in hope that something internal will show to know the cause and get some answers. I feel like something in my stomach/pelvic area is leaking (similar pain to having appendicitis all over again – except i dont have my appendix anymore!!).

I have recently gone to see a natropath; who has put me on a range of gut health supplements and advised to go diary, wheat & sugar free. (I am taking the supplements and limited my intake on the others – I do not feel they are the problem). I do not have any bowel problems as such.

If anyone can suggest a test or medication that I could look into and ask my doctor for?! I am currently seeing my gp weekly, my dermatologist every 2 weeks and now 2 surgeons and a natropath..surely I can get some answers soon because I am over forking out $$$$ and getting so relief.

Thankyou in advance

Discussion

Stacey Martin Sounds terrible. I’ve had hives for 5 years but never bad only once every 6 months or so until this may I got a terrible kidney infection. Was in hospital with 6 antibiotics and iv fluids etc. Hives started up and never left. Can only control with 25mg predislone a day now. All the antihistamines I have tried haven’t worked. Have gastroenterology specialist appt in Feb for scope. Also waiting for allergy clinic appt next month. I have recently noticed the pressure sensitivity too, especially knickers I have to wear them inside out and struggling to wear a bra and i get hives almost instantly where it touches

Jodi Kelley Stacey Martin oh my gosh how horrible! It’s not fair is it! I recently was told if they can’t find an answer after my surgeries then they may never find the answer. I didnt talk to anyone for 2 days, just went into my own little world of emotions.

Stacey Martin Jodi Kelley yep that’s exactly what they said to me too. I was dating a guy around the same time who was very stressful and I thought maybe it was him but we have been apart for a few months now and I have them worse than ever 😂😂😂

Ashley Caes Have you had your thyroid checked? Or an ANA to see if there is an autoimmune causes

Jodi Kelley Ashley Caes only via a blood test which came back good. What’s an ANA?

Christopher Lundgren Beyond all the advice OMG I will keep you in my prayers. This disease response is horrible and I hope you find relief from both the pain and all its effects as well. No words or text can do much to make you feel better but here in this group you have friends and support. I agree have them check your Thyroid as well.

Jodi Kelley Christopher Lundgren thankyou

Pamula Bradish Mcgregor so sorry for you, my daughter has them like you she takes the prednisone and antihistamines.. been on for a year… just calms them down…but makes it so she can live with them

Jodi Kelley Pamula Bradish Mcgregor it definitely isn’t fun. I find my body is fighting the medication now that it is so used to it.

Amanda Landon I have no advice for you but my son got hives at 3 year old while having an ear infection. had them horribly for 10 weeks. Broke his collar bone, falling off his bike, and the hives went away an hour later and haven’t returned. so strange how trauma seems to bring them on and make them disappear. keep searching! there has to be some kind of trauma going on in your body which caused them to come back

Jodi Kelley Amanda Landon I 100% agree with you there! That’s crazy!

Krystal Bella I recently started with cyclosporine as prescribed by my allergist. I take 100 mg daily along with 2 x 5mg xyzal pills, 1 singular pill, and 2 x 20 mg pills of Pepcid in the morning, and then same dosage xyzal and Pepcid at night. The cyclosporine seems to help, as I was previously on prednisone and the allergist wanted me off of that ASAP. I also go approved for xolair and will get my 2nd injection in 2 weeks. Haven’t seen results from the shots yet, but I hear it may take a couple of doses to start working.

Michael S Goodman I must be very fortunate; I’ve only had itches from hives and shingles!

Amanda Fonseca Falk I’m sorry for that!! , I take Allegra 24 hours