This is me today after my first appointment (yesterday) with an immunologist and he upped all my medication!! Iv only suffered with CIU for the last four months, it’s really getting me down.. Iv been put on a low Salysilate diet also, so really hoping this helps.. It’s the most horrendous condition!! This is just my shoulders but I’m pretty much covered from head to toe today.. There seems to be no respite, I am like this at least 5 days out of seven
Sue Elshire Hargrave Julie, I am so very sorry! We can all relate to this picture, so you are not alone! My hives have never left my body surface for 13 years and the list of things I’ve tried is very long. I am hoping your diet lessens the hives, and I am hoping that you’ll be able to try Xolair, and other meds, in case the Xolair is not your “golden ticket”! This is a very trying and life-quality-impacting disease!
Julie Bamboolie I’m hoping for some respite from it now that my meds have been upped and along side low sal diet.. It really is just horrid! It helps to chat to other sufferers, it’s such a miserable condition xx
Caroline Winter I was really bad last summer mood was so low
Then I was started on montelukast. It’s been my life saver. Xolair never worked and fexofenodine, even though I was on Max dose did nothing for me. Thank god for montelukast.
Julie Bamboolie I have been taking montelukast along with fexofenodine, certrazine and occasionally prednisolone.. My consultant tripled my dose of montelukast and certrazine yesterday,so am hoping this makes a difference.. For 5 days of the month when I take prednisolone it’s brill, completely itch free but unfortunately they won’t prescribe this on a regular basis due to side effects. !! I’m glad the montelukast works well for you, hoping it will for me also x
Caroline Winter Julie Bamboolie sorry just seen this post Hun . julie Bamboolie aww . I hope you find some thing soon Hun xx
Julie Bamboolie Melissa Reel sorry, only just seen this . I’m taking 40 mg montelukast at night along side 40mg certrazine and 180mg fexofenodine which I sometimes double up on!! Also benedryl through out the day!! Rattling x
Melissa Reel I am on 20mg Certrazine, 360mg Fexofenodine, Zantac 300mg, Trying to not go back on my Immunosuppressant (Prograf) Prednisone seems to be the only thing that tames them, (unfortunately). I will have to ask the Dr. about Montelukast, think I was on it about 5yrs ago.
Julie Bamboolie It’s definitely worth a try although I must admit, since starting on the higher dose I’m struggling to manage this outbreak. Two days of possibly the worst flare up yet, goes down in one area and then appears elsewhere! Seems relentless
Caroline Winter Julie Are you tried the days you are hive free, and feel like you’ve been hit with a bat. ?
Julie Bamboolie Iv been nodding off all day.. I work night shifts but have been struggling more so since CIU started.. Feel generally run down, as though I’m coming down with something all the time xx
Caroline Winter Yeah , That was me . Face and torso swelling too.
If you haven’t tried montelukast I would ask your specialist.
It made a huge difference with in 48 hrs x
Julie Bamboolie Iv been taking montelukast for just over a month but my immunologist tripled the dose yesterday, hoping for good results as I’m going crazy with it at the moment. Don’t even like leaving the house in case it flares up unexpectedly, as it does most days
Harvey Fedyk OMG. This is bad. I can feel the itchiness! Please take care.
Julie Bamboolie Thankfully it has mostly gone down today.. Just in time for my first night shift of seven tonight 😐 It’s so hot in work it tends to flare up and and make an appearance.. Thank you Harvey