Very bad hives

Hi Mimoza,

I'm so sorry to hear you are suffering so badly after such a long time. I have had very bad hives for 18 months and have been in the same position as you, bed bound feeling awful that I cannot play with my daughter and watching my husband struggle to do everything in the house. It is such a horrendous condition and people really do not realise how much it can ruin your life!

Where are you living?

I'm from uk, certrezine didn't work for me. My doctor prescribed me fexofenadine 4x the recommended daily dose and manyelukast. Can your doctor let you try a different antihistamine. Also I know steroids are not great but I used predisalone to get mad breakouts under control. I have seen an immunologist who will now be looking at putting me on monthly Xolair injections. Apparently a lot of people get good success with this. It's the next step.

Maybe you could discuss some of these options with your gp?

Also I found that following a diet low in salicylate and amines helped to control the hives sometimes.

I really hope you find some relief soon. Remember that this condition can take a big toll on your mental health so if you feel low and depressed then it's good to tell your gp this as well and get help.

I'm so sorry, I feel so bad for you. You are not alone. Take care x

I found help with a wonderful doctor at Johns Hopkins that was able to help me with my severe Chronic hives that no other doctor was able to do.  I have been hive free now for over a year.  I tried everything including Xolair injections....nothing. She started me on low dose either 25 or 50mg Cyclosporine Modified for several weeks before bumping me up to the next level ( I believe I was taking Allegra as well for awhile) she upped the Cyclosporine Modified very slow and I stayed on it for a few months before she upped it again.....some only need to go up to 100mg then level off if no more hives then stayed on that for several months if hive free before VERY slowly going down.   Mine were severe so when I was up to 200 mg doctor had to add Prednisone then go down extremely slowly on that ....it took a year.  I'm still Taking 1 mg Prednisone now every other day......the blessing is that I am  still hive free.  I was able to have quality of life back.  We also are taking L-glutamine and hear that quercetin supplement is also good supplement.  Many doctors do not know how to treat Urticaria.....I was fortunate to have found one that did.  Our bodies are all different and reacts to meds differently.  For doctors ....urticaria it's all trial and see what works best.  As I have told all you need to be under doctors care for these meds.  Cyclosporine Modified is a immune suppressant so you don't want to be on it long term.

important.....try not to stress.....that only aggravates the hives. I know easier said than done.. think positive...as God for help.

i wish you well....Hang in there....the hives will end.

wendy

Please Look up low histamine Diet and try to follow it as best you can then look into getting Zolair shots.  I've been geting them for 5 mnths now and it changed my life.  Before I didn't have a life because I was always suffering.  Now It's 95 percent better. My immunologist said i can continepue after six mnths no problem.  I don't have any side effect at all.

Hello Mimoza so sorry you are suffering with this hive but I have the same problem as you and it's been over 4 years now. My doctor is giving me shots of Xolair 2 shot at a time and already had 4 shot but damn it cost $1500.00 a shot so already cost 6 thousands but still have the hives but less redness. I hope it will work but not sure cause now the itch hasn't stop but worse at night, so my next 2 shot is July 11 and hope it goes away soon. Will let you know if i can if it works or not but i pray. Hope you can find a way but did you try Xolair yet through an allergist.