xolair shot (300mg/3 weeks) and 4 x fexofenadine, 2 x montelukast (singulair), 5mg Prednisone and 2 x ketotefen daily..
I think it is time to try something new to those on cyclosporine, did you continue xolair? How quickly did you feel an improvement?
Happy Jack That looks miserable, sorry you are going through this. I have never been on cyclosporine and I have had great success with Xolair and was able to cut my daily med intake almost to nothing, so I can’t relate on that level but I hope you don’t mind me sharing my thoughts anyway. Personally, the side effects I feel from Xolair combined with the the risks involved, especially regarding cancer, small as those risks may be would make it hard for me to stay with it if it were not improving my quality of life right now. I guess having lost just about every single one of my family members to cancer and having as many risk factors as I already do for it, makes me a little jaded and caused me to linger a little longer in deciding to go on Xolair, and would also def affect my decision on how long I’d give it to work had it not worked immediately for me, but it is a very personal decision and I’ve heard many people say it took mos for them to see results. I hope you get some comments from people with similar experiences as you. God bless!
Daly Yam Thanks for your input! Trying to stay positive.. question is how long to keep trying just xolair and the anti-histamine regimine .. I’ll go back to the professor next tuesday and see what she says.. she is hopeful that she will help.she said it will take time
Jen Neuhaus I tried cyclosporine and it within a few weeks I had no hives at all! I started having issues with my kidneys so had to go off it. Taking colchicine now along with doxepin, xolair 300mg every 2 weeks, fenofexadine, montelukast and prednisone..I’ve been able to tolerate weaning the prednisone so far.
Joyce Rosenblatt I take tacrolimus and I take Xolair. I’m trying to wean off the tacrolimus with difficulty.
Sue Elshire Hargrave It can take up to 6 months of xolair for some people to see progress! Don’t give up! Hugs!
Daly Yam I’m not giving up, just trying to learn from others’ experiences.. although I know that this illness effects everyone so differently. Really thankful for this blessed group!!
Yvonne Visée Clohessy Xolair made my hives worse. Dr put me on cyclosporine and have been hive free for over 3 years. Another nasty drug, but what drug isn’t these days? Always some side effect, I chose quality vs quantity of life as I wasn’t having a life. Good luck.
Tara Page There are a few immunosuppressant drugs you can try. They can all have side effects. I’m currently on cellcept. I have not experienced any side effects and my frequently blood work shows my kidneys and liver are doing well. I think some people have said that cyclosporine works quickly. Cellcept does not. It took some weeks to have my hives disappear. My doctor felt cellcept had fewer side effects (in terms of kidneys ) but it might just vary from person to person. Good luck.
I have also read that some people will stay on xolair and add then immunosuppressant then wean off the immunosuppressant. Maybe that might be an option for you. It stinks that it’s all trial and error for us. 1 magic pill for all would be nice
Franca St. Cyr Gravel Have you considered a Naturopath? They are expensive, but your health is most important. My Naturopath has gotten me off Xolair and so far I am continuing to wean off my other medications. I’m only down to 1 – 10mg hydroxyzine,1 – 20mg Cetirizine , 1 – 10mg montelukast every other day. It’s a great improvement to what I was on.
Shontel Howard We stopped the Xolair after 4 months. Then started on Cyclosporine. Ive been on it for 16 days. My hives stopped 3hrs after my first dose.