Xolair shots and Epi Pen

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For all of you taking xolair shots do you all have an epi pen.. I have heard some people say you have to have one if taking the shots.. Other people say they dont have one.. I am wondering what your thoughts are and what you were advised to do .. thank you

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  • Posted

    Yes I would also know the answer to that as I’m going on the 5th February to discuss Dapsone  and xolair injections. Had the blood test so waiting results. I don’t know if you read the daily mail news but they have recently been mentioning our illness on there and there was a lady who has chronic idiopathic urticaria that is heat and stress related and also another lady with cold urticaria and both carry epi pens. I have asked my doctor many times for one as my face swells to the point I’m unrecognisable and my lips get so large and can’t speak. They wouldn’t give me one as they say unless it’s a allergy they wouldn’t allow me one. But in the same breath they tell me they know nothing about this illness and haven’t come across a patient who has this. I have also delayed pressure urticaria and this is the one they are completely unknown to. I think we should carry one as it’s really scary when we get like this knowing how fast the swelling gets. But there is a higher chance of us getting a allergic reaction to any medication we take and I have read there are many side affects to xolair. If I find out in a few weeks I will let you know, but anyone else who knows I would be very grateful also to know.  But this is a great question jan and I’m glad I read this to bring this topic up with my consultant when I see her.
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    • Posted

      I have had chronic ideopathic urticara for 45 years

      I did allergy testing, took allergy shots for several years, did food diaries, could never find a rhyme or reason, I lived on benedryl, wore loose fitting clothing, as pressure or anything tight made condition worse. I also reacted to stress by horrible outbreaks of the huge, deep, edema type hives. This spring I began Xolair shots, and have not had a hive since, but I am experiencing what I believe to be side effects from the injections. Wondering if anyone else is experiencing any side effects from xolair ????

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    • Posted

      Hi Betty, what are your side effects I’m havring my last 6 monthly ones done next week. Have to say I’m amazed I have been hive free while taking the shots but the swelling is still there some days.  I do ache all over but not sure if this is related, and I’m always so so so tired. But again I’ve put this down the illness. The injections have helped with the urticaria side of things but pain and Swelling due to the delayed pressure hasn’t stopped also I stil get the heat and that prickly feeling like I’m going to break out in hives but I don’t get them visually. 
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    • Posted

      Hi Betty - first off, I am happy that the Xolair is working for you.  I feel very blessed because I took 6 months of injections and then chose to discontinue them due to the same side effects most other people have mentioned,  Aching muscles, sore spots randomly over my body, (especially my elbows) pain on the bottoms of my feet making it difficult to walk, etc.  I personally do believe that the auto immune condition compromised my immune system overall and I am left with arthritis.  I am 62 years old, so at an age where arthritis is common BUT I did not have ANY symptoms until I began the Xolair injections.  Good thing is that within 3 months of injections, I did not have any break outs.  I do still occasionally get the red, swelling, itchy feeling like I am going to break out.....but randitine, antihistamines and Doxepin taken immediately have prevented any break outs.  I am now 6 months without the injections and still doing fine.  Like I said, there are residual affects, but I am dealing with those and as long as I don't develop full blow hives again, I intend to continue with my present plan of action.  Everyone is different, but for me, the Xolair did work.  Although I hate the residual aches and pains, I am dealing with it and it is much better to live with arthritis than debilitating hives!  I'm gratefully better!  And, I am steadily working at getting the 30 lbs of weight off that I gained while taking so many months of steroids!  

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    • Posted

      Hi Meemaw so glad you do not have the horrible hives after stopping the xolair.. I have taken xolair over a year now and am extending the shot by a week now then two weeks then three etc to see if i can get off of them.. I did have arthritus before the shots but i too believe it made it worse but my dr said infact two of them say this is not true.. it was getting bad and it is a coincidence that it seems the xolair did it.. So I dont know but would still like to get off of it.. we shall see if I can .. I do get a few hives even with the shot and they are itchier but benedryl seems to fix it.. 
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    • Posted

      Hi meemaw29,

      Wow it was amazing reading your side effects.  Like I said before yes I’d o get aching muscles, but I have noticed one thing that has changed dramatically but I assumed maybe it was just something else that was wrong rather than it be a result from the injections. The bottom of my feet are so painful to walk on, especially in the morning but it last all day and every day.  The other is how swollen and stiff my fingers get. Some days I cry because they hurt so much. I didn’t put the two together  until now after reading about your feet. But again like you.... even though I’m 44 I would rather a life time of pain than them awful hives all over my body. I actually can honestly say I don’t think I could mentally cope with every part of my body covered in deep hives absolutely everywhere again. You get more support with having pain through arthritis than this illness. And the thought of being left again by doctors scares me. 

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  • Posted

    Hi Jana;  I do NOT carry an epi pen, never have.  The FIRST time I received the injections, I had to wait 30 minutes to make sure that I didn't have any reaction.  Now, I don't have to wait at all and I have never had an anaphylactic reaction. 

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  • Posted

    I started xolair treatment 2 months ago and got giving my epi pen yesterday I think they give them to people who are taking alot of different medications incase they react with them
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