Hives/Angioedema over 10 weeks HELP. Xolair?
Posted , 4 users are following.
Hello!
I'm an overall very healthy 31 year-old female. Between the ages of 16-17 I had a bout of chronic hives, and was on prednisone much of that time as no combo of anti-histamines, singulair, zantac, etc. even touched the hives. After about a year they went away, we thought it may have been related to mold? But i haven't had another hive in over 15 years.
On January 2nd of this year I woke up with a small area of hives. They have continued to get worse, except for one 15-day burst course of prednisone that took them away temporarily. They are now back and I'm also experiencing severe facial swelling. I am at my wits end....taking numerous antihistamines a day (and I don't know why as they aren't helping), cold showers, oatmeal baths, ice packs, I tried the AIP diet for awhile (they actually got worse during this). I have an appointment with an allergist this week, and hear a lot of good things about Xolair. Anyone have positive feedback out there? Should I ask for it? Any bad side effects? I'm terrified nothing will work, and I don't know how to keep living like this. Any info would be great!
0 likes, 14 replies
Meemaw29 bee11
Posted
Hi Bee11 - I think you will find that the Xolair injections will help. You doctor may not choose that path initially though as they are very expensive unless your insurance will cover them. I have had 6 months of the injections now and haven't had a break out in almost 5 months! There is hope!
wendy62425 bee11
Posted
Hello Bee11
Sounds familiar. I am now 66 and had breakout in hives two other times in my life. When I was younger Claritin worked and Singular then Allegra. Each time they lasted for about two years controlling them with those meds then hives just stopped and there where decades between these times where I had no hives at all. Two years ago I started to break out again but this time NOTHING worked and hives were severe...no quality of life...I tried Xolair but for me it only helped the first couple of weeks then I had to add Allegra..after the 6th months of Xolair injections my doctor wanted me to stop as it was not working for me. It does help others like Meemaw. You could ask your doctor about it and give it a try. If not covered on your insurance your doctor will advise you how to get it maybe through the manufacture I can't remember.....I only had to pay $5.00 for each injection. I did get some hair loss with the Xolair but others may not. When my doctor could no longer help me she sent me to A wonderful doctor that was able to give me back quality of life. I had to slowly go on Cyclosporine then she had to add Prednisone....I stayed on those for awhile HIVE FREE then she VERY slowly took me off the Cyclosporine then Very slowly bringing me down off the Prednisone 1 mg at a time each couple of weeks I would go down 1mg. I am down to 1mg Prednisone and 1 Allegra a day. Each time I had a hive breakout in my life it was around a stressful time...stress affects your immune system.
i hope this helps.. I'm sure others will add to our replays. Please keep us posted.
Wendy
Meemaw29 wendy62425
Posted
Yes, I have had thinning hair as well Wendy...although my doctor just does not believe that Xolair has ANY adverse effects. I have some time severe pain in my joints as well, the bottoms of my feet are like needles when I first get up i the morning and my legs ache....for the first couple of weeks after my injections. About the time, all my bad side effects end, it is time for my next series of shots. It is not a perfect drug for me....but I weighed the effects of the Xolair compared to living with a body covered with hives and chose my "poison". Xolair is much better than having hives! So, Bee, I hope that Xolair brings you relief!
wendy62425 Meemaw29
Posted
Hi Meemaw
Well some good news is that once you are off the Xolair your hair will grow back normally. I know what you are saying about choosing a medication for the hives.....it's what works to become hive free and have quality of life! For me I didn't want to have to go on Cyclosporine an immune suppressant or Prednisone but I have been hive free for over two years now with the exception of waking up to a few on my legs when I was going down too fast on the Prednisone. I was on the Cyclosporine just for several months while weaning off it. As mentioned I'm on 1mg Prednisone now which is very low dose. I am hoping to completely go off Prednisone and just take AAllegra.........I just liked the way my doctor was able to treat me and she really "cares". How long did your doctor say you will be on the Xolair injections?
have a nice day
Blessings,
wendy
Meemaw29 wendy62425
Posted
Wendy; my doctor thinks that it is a life sentence! He did say that when I hit the 6 month mark hive free, he will consider letting me TRY to go w/o the injections. I obviously don't want the return of the hives, but I also hate having to take the injections and antihistamines still. Glad you're doing well ----
wendy62425 Meemaw29
Posted
did your doctor mean a life sentence with the Xolair injections or life sentence with the hives? Hopefully neither! I pray we both can go into remission of this Chronic Urticaria!......and give our bodies rest from all medications.
Meemaw29 wendy62425
Posted
Hi Wendy; He doesn't believe that the hives will ever truly be gone. He did say that after 6 months free of break outs, he would consider trying to skip a month of injections and see what happens. From what I keep reading, it seems like every person who has CIU has years of clear skin and then the hives return....so I'm hopeful, but not unrealistically that I will ever be "cured".
jana94738 wendy62425
Posted
jana94738 bee11
Posted
First of all so sorry they came back mine came back after 40 yrs I am in my 60 and i cant believe i have to again deal with all this.. i dont know why so many ppl are getting them after being without so long.. I have been taking xolair for 6 months and was taking antihistamines with them but am now trying to get off the antihistamines and the hives have appeared here and there again. I do have an appt with my allergist this week.. as i have been having lots of joint pain , losing hair and weight gain.. I do not know if this is a result of the xolair shot or the antihistamines. I also suffered with angioedema and know how scary and awful that can be.. So in spite of the side effects to all these meds I am not suffering as much as i was with all over my body and face hives.. I have found warm to hot epson salt baths relieve and take away any i have and did before the xolair shot but at that time they came back.. now they go away and stay away with the xolair shot but again there are only a few.. I have been dealing with itching really bad some days but no hives and i did have this itching for three years before the hives came back again.. It is so hard for a dr to give a reason , I have had every single test in the books and no one knows.. The xolair is a bandage and i am so afraid to stop as i heard once you do that it doesnt work as well the second time.. I guess everyone has to weigh the side effects against the results with this shot.. good luck to you .. and talk to your dr about this shot.. and any other meds out there..
Meemaw29 jana94738
Posted
First off, THANK YOU for saying that you too have joint pain, weight gain and hair loss! What I do not understand, is that my physician will not even entertain the idea that the Xolair could be the culprit! He only has ONE other patient on Xolair and she has not had any adverse effects, so he thinks that mine could not be from the Xolair. BUT, I never had these symptoms before. Perhaps we could ask for all the folks on this forum that are getting the injections or have received them in the past, would chime in on any side effects. These THREE seem to surface often.....so, how many of you have had weight gain, hair thinning/loss and/or muscle/joint pain while receiving Xolair injections?
wendy62425 jana94738
Posted
Taking a very good probiotics are very good for us.....also L-glutamine and Quercetin supplements.....alcohol and chocolate are not so good for us.......
jana94738 Meemaw29
Posted
I went to my allergist yesterday and she too said the weight gain and hair loss is prob not due to the xolair.. but the antihistamines most likely are.. So she told me to stop them and see what happens.. so we shall see as far as the joint pain she wants me to see an arthritus dr which at his point I am not doing .. I have had enough drs for now..lol
Meemaw29 jana94738
Posted
Jana; when a person has been on so many different medications to deal with surviving the hives, it is hard to know for sure which drug is the culprit! Let me know if it helps you to go off of all antihistamines. I have cut back little by little for the past 3 months, so I typically only take one antihistamine a day. My doctor did give me Doxepin months ago to take at night....it is prescribed for many conditions including insomnia and anxiety and skin rashes. I looked it up the other day and read that it has been linked to weight gain. So, I tested it.....and sure enough the day after I had taken Doxepin at bedtime, I was starving all day long.....so obviously, I ate more than normal. It does help with sleep.....so once again, it's a trade off! Let me know how you're doing w/o antihistamines..... take care.
wendy62425 jana94738
Posted
Hi Jana and Meemaw
all I know is that when I was taking the Xolair injections which was only three months my hair WAS falling out and googled Xolair injections and hair loss and found a blog with other sharing the same thing....when I stopped the shots as they were not working the following months my hair grew back. As far as joint pain and weight gain I'm not sure as I was not on the injections too long but some joint pain. I do take Allegra each day and no joint pain and have been taking Allegra a lot the past two years mostly 1 a day. I think the doctors need to do more research on effects with Xolair. Have you ladies googles side effects from Xolair?
have a nice rest of your day!
Wendy