The hive guru at vandy


Venting :: I Am So BLOODY SICK of THIS DISEASE!!! covered with hives face to knees and so miserable all I can do is cry!!! I’ve tried every damn Med / treatment. I don’t know if there is anything left but to be miserable 😥. My immunologist said she was “out of her depth” with my case and sent me to the hive guru at vandy – he says this is one of his hardest cases. Well thanks for that feedback but where the hell does that leave me???
Ok rant over. Thanks for listening


Liliana Elena Preda
When I am bad, dexamethason helps me big time. Stay strong! ❤

Kimberley Ann
I’m in the same boat.

Shania Clark
i’m having one of those nights too, started my xolair treatment last week and stuck taking my steroids, montelukast, telfast and phernergan tonight to try and get it all
down, over looking like a Dalmatian. this might sound silly but try laying down and relaxing, stress and anxiety make it spread faster than you can say hive so having a distraction to calm yourself might help ❤️

Nadiya Fawad
Don’t loose hope.. There is cure for every disease..!! Please try homeopathic..!!

Kelly Northpolski
Hugs. I’m one of those “hard cases” too. Updosing of xolair helped me. 300 mg every 2 weeks. I got worse on 6 months of standard xolair dosing. You’ve probably done it all and aren’t looking for suggestions thought I’d throw it out there just in case. XOXO

Jim Bell
I’ve been there diet control gluten free organic and less alcohol was the only thing that helped me also environmental like mowing the lawn or playing with a chainsaw makes me worse. Stress doesn’t help either

Den Scorsh
My heart goes out to you. There are no words to describe how awful it is. You have friends in this group who understand how you feel and who support you. Sending positive vibes to you that you get well soon ❤️

Marion Saunders
I feel ur pain!!

Maureen Davidson
Feel sorry its the same in uk docs dont know what they are doing it is scarey wish you luck sending big hugs to youxx

Cindy Chester Light
Just out of curiosity, did yours start with an infection? Could you presently have a smoldering infection somewhere in your body?

Debbie Danford
Cindy Chester Light I had a bad yeast infection a few months before initial onset. That’s it

Cindy Chester Light
Debbie Danford Thanks. I’m just working through a theory

Katie Franklin
I’m so sorry.

Danielle Nostedt
Please try juicing. I know so many (including myself) that it has helped tremendously. Look at the documentary Fat, Sick and Nearly Dead. What’s that worst it could do? Good luck and hope you feel better.

Rebecca Gragg
Danielle Nostedt, can I PM you about your experiencing with juicing and this documentary? I seriously am starting to think this is gonna work for me and just need a friend who has gone through the process.

Danielle Nostedt
Rebecca Roush sure!

Rebecca Gragg
Danielle Nostedt, yay! I tried to message you through fb messenger but it doesn’t look like it was delivered. Just wondered how much the juicing has helped you, whether you do juice fasts or just incorporate it into daily diet, how long ago you started

Danielle Nostedt
Rebecca Roush I messaged you back. Let me know if you didn’t get it.

Danielle Nostedt
Rebecca Roush also if you have anymore questions let me know

Keith Dorman
Can you list all the meds you have tried?

Debbie Danford
Keith Dorman that’s a long list;
Am: 500 mg cellcept, two allegra, 1 Pepcid, currently 10 mg prednisone ( have been on prednisone since sept 2017 and it is slowly killing me. Highest daily dose was 90mg. Have not been able to wean off because the hives get horrible with an intensity of itching and pain that is unbearable. I’ve gone thru child birth x two and passed numerous kidney stones. This is soooooooooo much worse) Pm: 2 Zyrtec, 1 Pepcid, I -50 mg hydroxazine,1 doxepin, CBD oil supplements:
Magnesium ,Turmeric , Krill oil , Vitamin d, Vitamin b complex
Multivitamin Now showing signs of kidney damage and have a brand new heart murmur. Retaining fluid like crazy

Debbie Danford
Tried cyclosporine- couldn’t tolerate. Made me feel like entire body was on fire

Cara Koonce McDaniel

Debbie Danford Will your doctor consider immunosuppressants? I was on almost all the same meds and more when I was first starting and the only thing that stopped the hives was Imuran.

Cara Koonce McDaniel
Debbie Danford I meant another type of immunosuppressant

Debbie Danford
Cara Koonce McDaniel I see him on the 30th and will ask. I just need a strong game plan with some relief in sight. I don’t need a total cure (I’m not greedy lol) just some relief

Keith Dorman
What dose of Doxepin? Hopefully it isnt something low like 25mg, cause if it is, try a much higher dose. I would suggest sticking to just 4 zrytec or 4 allegra and cycle between the two every 2 weeks otherwise youll just build up a tolerance to both of them. Find a doctor to try out LDN(Low Dose Naltrexone) too as it works through an entirely different mechanism to the rest of the meds you have been on.

Keith Dorman
Betablockers can help normalize heart rhythm issues, I have tachycardia and issues with long QT due to huge doses of anticholinergics I am on and the betablockers keep that mostly in check. There is also Tacrolimis to consider instead of cyclosporine.

Joyce Rosenblatt
This disease makes us desperate. We’re there with you. Hugs!

Cassandra Pandolfi
I’m so sorry. You are not alone. This disease definitely impacts our emotions because it’s like a form of torture. At some point we break because it’s just so relentless. That’s what we are here for. Your immuno-soul brothers and sisters that know exactly how you are feeling. I hope you find some relief soon

Audrey Vargas
hi there! i truly understand how you feel. its horrible. i have some suggestions on things to look into to getting rid of this which I am doing myself. if you wanna chat, feel free to message me

T Om Brady
It’s so tough to remain optimistic as the weeks, months, years tick away and the unrelenting histamine showers continue to thwart every strategy we find. The Idiopathic nature of this disease is fkn maddening. I see some strategies work for some and not for others… I have had some relief once in a while, but the CIU is always lingering just below the surface waiting to rage again.
We would all have PTSD if we could ever reach the “Post” part. Ours is an Ongoing Traumatic Stress Disorder …OTSD. I’ll coin that.

David Weston
I’m sorry you’re going through this. I cried in my car before going inside this morning when I got home from my 12 hour overnight shift. Couldn’t let my 4 year old see. It’s so hard to stay strong.

T Om Brady
David mine are usually worse at night… the day shifts are bad, but the night would truly suck for me. Whenever I am on-call ( nights) I am fighting antihistamine drowsiness as well as the hives. Peace Brother man.

Lindsey Long
Sorry to hear this, mine is stress related and sometimes it just flares up, I cannot predict it! Doctors don’t know why either. Wish you a speedy recovery and sending healing xx

C C Cox Shelp
Did you try Xolair? It’s a shot. Life CHANGER for some (like me) not so much for others. I feel your pain. I’m so sorry

Debbie Danford
C C Cox Shelp yes I’m on 300 mg every third week for the past year

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