I have been dealing with hives since May 2017. I have tried everything it seems. Xolair, Dapsone, Sulfasalazine, Doxepin, zantac & zyrtec combos…nothing seems to work except a low daily dose of prednisone.
This can keep me controlled although it is not the best option but I am in college so i don’t really have a choice. This past week though I started to experience very very itchy welts on my chest and neck area, usually my rash doesnt itch unless i start scratching it but these were unbearable. I am on another prednisone taper and I just not sure what else to do after its over. Doctor is suggesting Cylcosporine but i am so burnt out with medicines.
I also get really warm, my cheeks get flushed significantly and i just feel inflamed pretty much 24/7. Also suffer from angiodema but I would say it was decreased significantly since May. Any suggestions on what I should do next? Everyone keeps telling me they will run its course and by a year disappear but i’m not so sure about that. Been tested for allergies as well and autoimmune disorders and everything came back normal last May although my Vitamin D was low but not too low.
I personally think its tied to diet but my allergist disregards that every time i bring it up. Let me know what you guys think
Alissa Rosinia Surendran Same boat. They put me on Colchicine and ketotifen. Isn’t really working for me but it’s better than dapsone according to my doc. Trying low side effect things before the stronger stuff.
Hannah Boiko does it get you by without having to take steriods? All i want is to get off steriods and have some control!
Alissa Rosinia Surendran No..that’s the goal for me also..but I was able to get down to 2mg from being at 10mg for 9 months. I go Wednesday to re evaluate.
Alissa Rosinia Surendran Cyclosporine has more side effects (I think). Ask about those others first. The only issue is ketotifen is not made in pill form in us. Had to order from Canada!
Hannah Boiko sounds good! and you’re on ketotifen & colchicine? with 2mg of prednisone? would you say you are controlled and aren’t breaking out every day?
Alissa Rosinia Surendran I get hives daily but not bad.
Melody Matthews Hannah Boiko I took it for three years and decided to eliminate some of the drugs. It was the first to go, and after stopping it, my hives didn’t get worse, so I figure it probably wasn’t helping. Check one less drug off the list! According to my immunologist, it does help some. Everyone is different. Worth a try!
Elizabeth Perz Have you also tried Singulair (montelukast)? I decided to try it with my 5th bout of CU, even though it didnt help when I tried it with my 1st (I was getting desperate). This time it made all the difference. Also, just an observation – it seems you have tried a lot of different meds in not a very long time (relevant to resolution of CU). For whatever reason, CU takes a while to get under control – any chance some of the meds werent tried long enough? (My bouts have taken 12-18 months to resolve. Good luck!
Hannah Boiko i asked for Singulair one time but one of my doctors said no, not sure why. I hear that singulair is good in a cocktail.. and Yes i have noticed i haven’t tried anything longer than a month..except Xolair, I got around 7 shots and it still wasn’t working. My doctor seems very quick with me to try the next thing if it hasn’t been working after a month or if i have had side effects, not sure why but after being on here i was thinking maybe i havent given my body enough time! After this taper i might just try antihistamines and h2 blocker again and see where that takes me! So do you get them for 12-18 months then they go away for a while and come back?
Elizabeth Perz Hannah Boiko In my 5th bout right now, first time was 22 years ago. My hive-free times have lasted 3 to 7 years. I am fortunate in that I know if I can just control the itching and the extent of hiving, odds are it will resolve. It is important to keep up with antihistamines (H1 and H2), at the higher doses, even when hives are relatively controlled by a burst of prednisone. Doxepin has helped a lot with night time itching, and like I said montelukast really decreased the number of hives. I have been on dapsone for 8 months. Hives are slowly getting fewer. Also, what has helped with this bout, Biofreeze gel applied as soon as a hive pops up, really helps with itching.
Hannah Boiko Yes, dapsone really made a difference for me in the beginning so i might ask my allergist to go back on it and see what happens. Must be crazy to have none for 7 years and back all of a sudden 🙁 Thank you for all the info! which H1 and H2 do you use? I just dont want to be prednisone dependent anymore but also controlled at the same time.
Elizabeth Perz I have a history of a multilple positive ANA tests (an autoantibody) that predates CU by about 8 yrs. I have tested positive on multiple occasions for thyroperoxidase (TPO), another auto-antibody. No other cause, so presumed to be autoimmune. Became hypothyroid about 5 yrs after testing pos for TPO.
Beatriz Al-Saigh I am assuming you all are on a Mast Cell Activation Disorder or Mastocytosis regimine of h1s and h2s? I have been taking zyrtec 10mg in am (but was told to take one in pm if i need to, never had to because I take Singulair/Montelukast in the pm), pepcid 20 mg in am & pm, benadryl 50mg at bedtime, omeprazal 40mg in am. I have been hive free for 5 yrs!! And btw, if im not mistaken,all hives/urtecaria are itchy! I too have positive ANAs, but not diagnosable. I suffer from POTS/Dsyautonomia.
Guy Berg Have you tried seeing a homeopath. It helped me a lot. People tend to go to a homeopath when they run out of other options
Hannah Boiko i havent yet but I have been interested in going!! Its on my list!
Alex Close I was so against them but she changed my outlook on this disease. I support this!!