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Anyone had experience with Xolair for the treatment of chronic autoimmune urticaria?
My wife has been experiencing an outbreak of chronic hives for almost 2 years. It started after she broke some bones in her foot and in using crutches she got a pressure hive outbreak. We have tried controlling with H-1 antihistamines. They exacerbate her condition rather than control it. We recently tried hydroxychloroquine with adverse side affects. We have tried L-thyroxin treatment as well but the hives did not go into remission. These are delayed pressure hives and the outbreaks resolve and return with regularity depending on clothing, sitting on hard benches, wearing closely confining clothes and shoes, etc. We are now looking at a very expensive therapy, Xolair (Omalizumab) injections at $750 a pop. Before taking the plunge I am seeking personal experiences with this ************** for autoimmune urticaria so that we can make a more informed decision. I have read a number of studies and understand that immediate and delayed anaphylaxis has occurred on rare occasion in clinical trials. Any stories would be helpful to know.  
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Len,
There was a pressure hive component to mine (pressure would cause hives) but hives would also appear with no pressure.  My diagnosis was "Idiopathic Chronic Urticaria".   I hope your wife continues to see improvement.  How wonderful she has you on and by her side.
  ~Wendy
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My husband has been suffering with hives for 11 months now. He is currently taking medrol, cyclosporine, doxepin, Zantac, Zyrtec, and benedryl as needed. He was having some relief but he is a farmer, and when he started picking peanuts, he had another outbreak. We have seen several doctors and have an appointment with Dr. Lawrence Schwartz at VCU in Richmond, VA. Hoping he can help us. If anyone has a doctor that treats this disease on the east coast, we would love to get their names. we are willing to travel if we need to. My husband is interested in taking Xolair but worried about the cost. I just came across a press release on Genentech's website that was posted on 10/10/13 that said the FDA has accepted their application for approval of Xolair for CIU. They should make their decision during the second quarter of 2014. We are hoping it gets approved so that he can get the injections.
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I have been suffering with chronic idiopathic urticaria for the past six years.  I initially went on the usual hierarchies of medication that you mentioned in your e-mail.  I had to stop Cyclosporin when my kidney values changed and found the antihistamines useless for the pain and suffering.  I had a difficult start with Zolair - one physician ordered a number of expensive tests which of course, are useless and then refused to treat me because she was uncomfortable giving a drug that was not FDA approved for the condition.  I did find a highly respected allergist, in NYC who took a chance with me, his first patient with this disease.  Two days later, there was a remarkable improvement.  I continue with the injections which were initially recommended at once a month but have been able to spread them out to one every 7-9 weeks.  We fought with United Health Care, a notoriously difficult insurer and after three internal rejections, they had to send the request to an outside source who approved the request.  The physicians on their staff were not allergists and really had no knowledge of the disease or the medication.  Amazing how an insurer can cloud a picture to add to their bottom line.

In any event, my advice to you is to contact Novartis, as they have a list of physicians who administer Zolair.  No doubt, they would be able to locate someone nearest to you.  Additionally, keep pushing the insurance company, make sure your doctor takes photos to substantiate the complaint and chose someone who is willing to go to bat for you with your insurer.

Best of luck to you all.
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6659843 tn?1383502827
Reading most of the remarks, I assume all of you have wondered WHY the hiving starts? My over 3 years with constant hives started immediately after having had an Upper and Lower GI series done. I questioned that this could have been precipitated by the use of "contrast dye" - and was told yes it is possible.

But the question arises - how come surgeries and other like tests done decades ago  (or setting of a broken limb, or other medical procedures) - did NOT result in people developing these intractable urticaria conditions? I don't ever recall any family or friends having gone years with a horrible condition like this??  So what is the source of the problem? I've wondered about environment too - and am now on a non-GMO, low histamine, low salicylate diet - gluten free besides - and I still react to many if not all foods - making the hiving worse. I cannot wear any tight clothing - even the seatbelt in my car, sets off more hives. The whole condition is impossible, and I'm on Medicare which would never ever pay for something like Xolair.

I am taking a hefty dose of Zyrtec, Zantac and Singulair - and was just put on cyclosporine besides (which I seem to be having a negative reaction to).

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ElFra
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Many of the people who have chronic hives appear to have seen them precipitated by some kind of trauma whether surgery, a fracture, or an illness. The commonality is more than coincident. It appears that these events trigger an autoimmune response that continues to switch on even in the absence of the trauma. Could environment be playing a part in creating the chronic condition? That is hard to say because there is no common environmental source to point to unless is is the air we breathe.

Even Xolair, which my wife is getting, does not provide her with full remission. It is just lessening the severity and duration of delayed-pressure hives. But for that I am grateful because she can get back to living a reasonably normal life with this biologic injection every couple of months. What all who suffer from this debilitating condition need to do is pressure governments and the drug company to make sure Xolair appears on the formulary and is more affordable.    
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I go to Dr. Scarupa in Chevy Chase, MD. He is amazing and has done many studies on Xolair and Chronic AI Hives. He was able to get my insurance to authorize Xolair. Though, I will admit that I have asthma, too, which I'm sure makes it even easier to get authorization.

As for the cost, with insurance, it still costs me $200 per month. However, on Genentech website for Xolair, you can complete a form and get a Xolair Co-Pay Program card that brings the price for me down to $40 per month. I recommend anyone with the same situation as me to get the Xolair Co-Pay Program card to help with the cost.

Going back to Dr. Scarupa, I would highly recommend going to him. He really cares deeply about this issue for hives. He knows and recognizes this kind of hives like he recognizes a freckle on your face and knows how to deal with it.

As for the possible side affect from Xolair of aniphylaxis, he will make you sit in his office for at least an hour after injection. Then, you have to be checked at the injection site as well as making sure you are not having other reactions before being released to go home.

I highly recommend Dr. Scarupa. His website is allergyasthma.us
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Hello,

The FDA approved Xolair for CU around March 22nd.  About two weeks ago.

I too suffer from chronic hives and angiodema.  While mine does not seem to be as severe as others on here, I am still working with my doc to get the shot in the next two weeks.  He has to attain the shot and seek pre-approval from bcbs.  

I have many weird autoimmune issues which mainly occurred after a c-section.   They eventually subsided, but re-occurred when I came off the pill.  I believe estrogen levels are a trigger, but not the cause.  I also believe other things like a c-section, surgery, stress, or getting sick will put the immune system into a state of hypersensitivity.  I could be wrong, but these have been my experiences.  I have another disease that clinical trials have begun with Xolair.  

Anybody had side effects other than swelling at the site of injection?
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Hello, I'm in the exact same boat as you, I get my 1st shot on Thursday for chronic hives, has it helped and how long before you saw improvement?
thank you for your time... ; )
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My wife had her fifth or sixth shot two weeks ago and her hives have completely disappeared for the moment. If the normal course occurs she will be good for about 3 to 4 months before needing another.
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4 years of my life had been taken over by this illness, chronic auto immune hertacaria as well as chronic auto immune andgiodima, my feet would swell three times the size, so I couldn't walk, my eyes would both close shut and I couldn't see, my lips would swell three times the size, my hands would swell three times the size, it took over my life. Within the last 4 years I've been on so many meds, prednisone, and so many others that are known to treat this illness. I've been tested for every immune deficient illness and nothing, I've had every single allergy test done and nothing. It got to the point I couldn't work any longer, only to find myself to fight for disability which I was automatically denied because this isn't an illness listed to be approved. This illness has turned my life upside down and has caused a major financial burden.
The systems started worsening as the swelling started internally.

Finally I get a call from my doctor telling me that xolair was finally approved for this illness. It took some time but the doctors fought to get it approved and Medicare finally approved it. Medicaid denied it and refused to pay, so for those who are on Medicaid it won't happen, but for those on Medicaid will be covered once the doctor fights for it.

The very same day of getting the shots "two on each arm" my swelling went away. Although I just started I felt a difference right away.

My body does hurt a lot after getting these shots, and for many taking this medicine please expect hair loss and sharp pain in the arms after getting the shots.

So far it's working and god willing stays that way, although my body had gone at times weeks with out a flare up, but as I said I feel different.

I am a male, 38, Bronx NYC,
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Is anyone experiencing bone pain from taking this medicine? Two weeks into my first shot I had bad bone pain in my legs,  after the second shot it's worsen to the point that I am unable to walk up stairs
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I had my first Xolair injections (300mg) on June 11, 2014 after a year of suffering with Chronic Urticaria. In two days my hives were gone completely. No hives have appeared to this date. No noticeable side effects. A miracle drug for sure.
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I seen that this post is old, but I wanted everyone to know that since my 17 year old son has been taking Xolair for two months, that his hives have totally stopped.  He has had this condition for over two years and nothing was working for him.  The Autoimmune medicine Cycosporine was helping, but he was having to take it along with 4 other pills two times a day just to calm his hives, it never really went away.  He explained it as being tolerable, but still itching.  I am so thankful that the FDA finally approved Xolair for hives a couple of months ago, And so thankful that I have insurance that leaves me with only $18 a month to pay. I also wanted to let people know that there is a Xolair assistance that pays 80% of the medicines or of any co-pays that you  may have.  It is to my understanding that this assistance is available to anyone. So those who have severe hives, there is hope and assistance out there.
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Would anyone care to elaborate on the paperwork process to get xolair approved? When I go on genetech's website they have a section that explains that both you and your doctor have to submit a form, and that the process can take two weeks? Their website isn't completely up-to-date, so I wondered if this is old news and a remnant of the days prior to FDA approval. In fact it's hard to delineate on their website if that paperwork is only required if you're applying for co-pay assistance....very confused.

My doctor agreed to prescribe the medication and called the compounding pharmacy right away. They called my insurance and it is approved on their formulary (but that's as far as they could get with the process as it's a weekend and wherever they receive the xolair from was gone until Monday.) I'd just hate to get the bad news on Monday that I'll have to wait an additional two weeks.

I'm hopeful I won't have to wait that long...although, I've suffered for 16 years, I suppose 2 more weeks won't kill me!
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My doctor filled out the form, I signed it and they sent it to Genentech. The process could take about 2 weeks. The dispensing pharmacy should call you to set up the first appointment after they get approval. My doctor gave me the phone number for the pharmacy and I called them to check on the approval process. This could help you speed up the appointment process if the approval has been received and the pharmacy has other tasks ahead of calling you. Good luck! This has been a miracle for me as you can see from my prior post. My hives were gone in 3 days and I tapered my antihistamines for 10 days and now take none. Had my 2nd shots yesterday and still no side effects.    
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I have been living with CIU, deep pressure hives, cold and heat induced hives for 30 years.  I had my first injection of Xoliar on July 22nd.  I still have hives and I am hoping so much that these will go away and I will have a new life.  I also have psoriais on 95%of my body.  Does anyone have psoriasis too.  I f so di Xolair help the psoriasis as well as the hives.  It is so good to read this news about people losing the hives after a few days and some months.
Thank you
Julie
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I have had severe uticaria dermatographism for about 4 years now.  I have tried it all.  I was on Cyclosporine for about 1 1/2 years and it helped very little.  I started taking the Xolair shots along with the Cyclosporine and several other drugs 11 months ago.  And yes paying the $750 a month for it for a few months before getting approved by my insurance.  It has helped me tremendously.  I hardly had any breakouts.  However...I have just this past month started to get bad again.  I pray that I continue this goes away again.  I can't handle going back to the way it was.  It was unbearable. By the way, I had Health net and now I have United Healthcare.  Both covered my shots.  Good luck to everyone!  I know how hard this is to live with!  
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10817748 tn?1413043089
Could anyone please tell me their success with Xolair as treatment for severe eczema/asthma? I since have also had chronic urticaria on top of this eczema, now for 6 yrs. Previously, I had gone the Prednisone route and finally our last straw was to go with an immuno drug, Cellcept (It's a love/hate relationship!) It clears me up, for the most part, but the scary side effects and being open to all disease is a major concern esp. when I get ill with some virus, etc..My skin went crazy as I hit peri-menopause and I've tried EVERYTHING. As a todler, I had severe skin issues for 12 yrs then it'd pop up here and there all through life..waxing and waning (now still dealing with all this some 48 yrs. later) but these last 6 yrs. have been pure hell! I had to quit work and it's kept me home bound due to the 24/7 itch that no DR can stop. I've tried every test, med, natural thing/diet under the sun...even Xolair, in the past, but the pulmonoligist, who was asked to administer it, back in 2005,. hesitantly, thought It wouldn't work and that I'd see results right away if it did...which I didn't. So, he stopped the injections. Recently, I travelled to consult with a Rheumotologist at Cleveland Clinic and he said there are better findings now with Xoliar helping skin, and I should try it again. It was initially a fight back in 2005 and after being denied I had to plead with Blue Cross to allow me to try it. I did for a few months, then later again when rashes were worse, but I'm wondering now if I had stayed on it long enough, both times. The Cleveland doc said they sometimes only start to see help after using Xolair 8 mos.and felt the previous doc didn't keep me on it long enough. Any input would be greatly appreciated! I guess I'm aslo interested in knowing if Xolair has effected your eczema in a positive way. Thanks!
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I have had CIU for 11 months.  So far I have had two injections of Xolair - 300 mg. once a month.  I have not seen any improvement at all.  Are there others out there like me?  How long did it take until you saw improvement and when did you give up?  Luckily, my insurance covers the injections.  I'm feeling hopeless....
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Hi.  Your story sounds so familiar.  I have idiopathic auto immune dissorder. With a few outbreaks I can relate it to stress, like when I had to have a coloscopy and was freaked out about having to drink that awful stuff. Did it to myself.  Though I try not to "worry" about things it doesn't seem to work.
Though my feet and hands have swollen a bit they haven't been an issue.  But when my eyes swell so bad they are almost closed or my lips are huge then I have issues.  Then there was my tongue swelling. I had been going  to an allergist that did every test imagineable.  After the tongue swelling he referred me to an immunologist. I was in the ER 6 times in 2 1/2 months.  They just gave me prednisone in high doses.  Almost 20 lbs later I do not want any more prednison!  My doctor told me about Xolair about 6 weeks ago when I was having an outbreak. He requested approval from Medicare but they won't cover it.
They said the doctor can buy it and they would then decided what they would reimbuse him.  He has a small practice and can't afford to do this since he feels I will need atleast 3 shots at somewhere around $1,000 a shot. Then I had a smaller outbreak 4 weeks later and after seeing him he said he was going to call Medicare personally and find out  why I am not being approved.  Havent heard from him yet and I am sympton free so I havent called him.  I am hoping that sooner or later it will be approved.
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Hello. i was just reading this email.. i also live in nyc and suffer from chronic hives. i was wondering if you could recommend a protocol and who to help me in nyc??? i am suffering for too long now and need help. please email me at ***@**** thank you so much. amy
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Ok so this is a older post but I have a questions?  7 yrs ago my father was in ICU for 4 months just before he past away.  I have had UIC since it did ga away when I saw a dermatologist in 2010, She put me on a combo of Cellcept and Isoniazid I took it for about a year and had awful side effect of diarreah she gave me folic acid to take but it did help.  I finally decided I couldnt take it anymore and just stopped.  I recently have a return after 4 yrs, i have been to my family dr a couple time of course you get a steroid shot and pills to take and yes it gets rid of them but I cannot take them forever, so I am going back to the dermatologist next week and hoping for a new cure rather than the cocktail I had before.  Anyone have a suggestion for me, is Xycal that good for the price?  My is stress related according to my doctors.  
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Hi JulesJo. I'm in the same boat. I just had my fourth Xolair injection and so far I haven't had much success, but I'm holding out hope. After reading about the clinical trials and everyone's success I just figured it would work for me immediately. After the first month it seemed okay, but I had to go on prednisone after the second and third shots. I had my fourth shot two days ago and like I said, I'm hopeful! I re-visited this message board today and was relieved to see a few people say it can take up to 5-6 months to work. To me that means there is still hope, although like you I was feeling pretty hopeless during months two and three. Hang in there!
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I had the same,,,i took it a week ago with no result,,,evenworse had anaphylaxis
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I have same reaction after my first injection. I never had hives like this before. My allergy was in control with H1 antihistamine. Doctor decided to give my xolair to keep my off my reactine but I ended up taking tons of other meds like Benadryl and prednisone. I am feeling like hell. I don't wanna take another injection.
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After fighting aganist the Urticaria for months (comeback after years)  I also received an Xolair injection.300 mg 44 days ago.

This injection worked on me and my non stopping urticaria dissappered a day later.Nothing comes out since then it just stopped.

You may think that I am happy or thank the xoalir right ? HELL NO !

This drug RUINED MY LIFE !

From the first day to 44th day I have had a terrible dizzynes,vertigo attacks and sleepy mood.Sometimes those problems got worse and I cant even drive a car.It just dont pass I feel terrible headaches,vertigo,lightheadness etc.My psycology is at the bottom and I am about to go insane.I pray god everday to get rid of these side effects.Urticaria is a very disturbing problem but this well I prefer to have urticaria for the rest of my life but I dont think that I can live any more with these vertigo attacks.

SO BEAWARE OF THESE SIDE EFFECTS FOLKS !


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Have you had any relief yet? I just took my first shot and I haven't seen any improvement yet.
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Hello Fiz,

How is going your treatment? I have being had serious hives even taking antihistaminic and prednisone, and my doctor suggested to start xolair.
  
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Reading these posts tells me that I am very lucky compared to most folks here. I have had CIU for about 7-8 years bot only get 2-4 attacks per year. Second gen. anti-histamines do not seem to work and my MD wants me to try Xolair. Has anyone here been treated with Xolair for such  a mild case like mine and if so, what were the results. Many thanks and God bless all.
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I've had 5 rounds of Xolair shots and although my hives are going away slowly, I still have them and unlike some people can't report that they went away miraculously. Doc upped my dose yesterday from 300 mg to 375 and my stomach has red bumps/hives on it today. I hope the hives just go away and stay away forever. It's discouraging to have any hives the day after my shots.
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I'm having same experience, was hoping it would work with first shot but after 5 rounds of shots my hives are a little better but not completely gone. I have been taking 300 mg every 2 weeks so it's only been about 2 months. Six months is a long time to wait, let's cross our fingers and hope the shots work!
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I have had Urticaria for 3 years and tried all the meds others have tried.  My dermatologist has had me on Cellcept (500 MS daily) which has helped tremendously but my new dermatologist wants me to try Zolair.  I'm having my first injection tomorrow.  I hope I'm not making a mistake switching.  My Uticaria is under the skin which means it isn't visible until I start scratching.  Miserable!!  Has anyone else changed from Cellcept to Zolair?
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Unfortunately, this is exactly what happened to me! I was on Xolair for 9 months and at first it lessened my hives, however it gave me such bad joint pain that after the 9 months I stopped. I DO NOT recommend Xolair for anyone who is experiencing any joint pain...I now take Humeria and deal with the hives separately. (Which still continue to come and go and leave me in stress.....)
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hello fellow chronic urticaria sufferers!

after suffering for 6 month with those terrible hives, I just got my second 300mg xolair injection.the first one was 1 month ago and was only 150mg and did help a little but was far from completely controlling them.
Anyway, it's been  7 days since my second shot and it seems this time not only it didn't  help- it actually made my hives 10 times worse! to the point where I'm now covered head to toe:(
In addition to that, I seem to get real strange armpit pains and have a pea sized lump in my armpit which I swear wasn't there a week ago...
I wonder did any of you guys had the same experience with xolair? or did any of you experienced  a worsening of the hives for the first days after the shot and than a sudden improvement?
stiil fighting not to lose hope....

thanks in advance for sharing!
D
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I agree, I went to the hospital for a small procedure which involved a small tube in the urethra. Being a man I was stressed like crazy leading up to it. I got CIU 2 months after this so I believe the trauma messed up my system which led to this condition. *****! 9 years and counting...:(
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I have been on Xolair for about 8 months at 150 mg. This drug is awesome! I went from debilitating hives to nothing! I have also been on dapsone at the same time. So they are bumping me to 300 in hopes I can get rid  of the dapsone.  I have had this condition for seven years.
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Yes
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I have a similar story to most others on here.  I have been suffering from CIU for 7 years and the symptoms continually got worse over time. During the 7th year of suffering with this condition I would wake up every day covered in hives.  I would get them from heat, anytime my body was relatively warm, pressure from anything on my skin and possibly stress although it is hard to say if it was stress related.

I have seen several allergists and dermatologist over the 7 years and have tried a large combination of drugs, antihistamine and steroids none of which improved my condition at any point. The only short term relief I would ever get was by sitting in an ice bath, not a cold bath, a bathtub filled with mostly ice and freezing water.  This was brutal but it did help to calm my skin down and I would feel semi normal after my body thawed out  

I finally found long term relief in two forms.  I met with a parasite specialist which slowly but effectively calmed my hives down and then I started taking Xolair.  I live in Canada and my insurance does not cover the Xolair,  it is expensive but it is also worth it.  I would also recommend to anyone with CIU to see a parasite specialist if you are looking for another possible solution or combination of solutions. I had no negative side effects from the Xolair or the combination of parasite medication.  While taking both medications I was 100% hive free for the entire time, almost a year.  I was also hive free for 4 months after I stopped with both medications.

After 4 moths of no medication the hives have now reappeared and are progressively getting worse everyday.  I am scheduled to get a Xolair shot this week and will post again with the results, I am also going in later in the week to see the parasite specialist and will begin taking the medication from her again as well.    

If anyone knows of an insurance company that covers Xolair in Canada please let me know.  I hope the parasite tip and the ice bath can offer some relief to others as well.  
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Hello aren't you concern about the cancer side effect?
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Has anyone tried Hypnotherapy?  I have had Uticaria Dermatographism for 7 years now and have taken everything!  I was on Cyclosporine for a few years and now Xolair for 2 years.  They say something tragic happens in your life to make this condition happen.  It's like a light switch in your body, which I believe is true because I did have something tragic happen to me when this all started.  It would be interesting if hypnotherapy could make it switch back!
Oh and I take a double shot of xolair every month and I would hate to see how bad I would be if I didn't take it.  I still itch uncontrollably every day!  It runs my life.  
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Thank you for your comments.  I am going to start seeing a hypnotherapist to help me and was interested to see that someone else tried it.  
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1064552 tn?1322583358
I have been having escalating problems for almost 30 years, but this year the idiopathic angioedema and urticarial skyrocketed and the asthma/shortness of breath (due to lung inflammation) have been poorly controlled, but not terrible.  I have oral allergy syndrome and oral latex syndrome in addition to a pretty long list of allergies and recently also found out that I am IGG deficient (with 3/4 subclasses also deficient).  What a mess.  Prednisone doesn't help, the arsenal of allergy medication only barely helps.  I am on an extremely limited diet (almost no plant based nutrition) until we can get this under control.  So much anaphylaxis.  I get anaphylaxis with almost every skin test panel I get and from many foods.  Ugh.  I'm starting xolair tomorrow and may? be starting igg therapy soon also.  I'm lucky that my insurance was easy going about it.  I got approval within a month or two.  There is also now a copay that most people will qualify for on the xolair.com/copaycard site.  It reduces your copay to $5 for up to a total of $10,000 per year.  And you can get it the next year... etc. Check it out.  It can really help the financial part.  They also have a more inclusive program for people who meet the financial requirements.  The xolair.com site has info on it.  Good luck to you all.  Jen
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I dealt with CIU for well over 20 years, precipitated after a bout of postpartum thyroiditis.  Like many, I really believe hormones and traumatic events are triggers for this awful syndrome.  I deal with hives on my face and neck primarily, which appeared every few months initially, to being there all the time within 5 years.  I tried everything from antihistamines (how does one still stay standing on 50 mg of Atarax 4x/day???), H1 blockers, immunosuppression with Tacrolimus and/or Prednisone, Singulair, Xyzal and Elidel cream, to no avail.  I never was willing to try Methotrexate.  Stress, illness, sun, hats touching my face, jewelry, anything would throw me into a horrible flair.  My allergist fought very hard to get my Xolair, and to get me copay assistance for it when it was first being approved for CIU.  I started the injections in January of 2014 and have not had a flare since starting them.  It has been life changing.  I still avoid the sun, which was a major exacerbater to my hives, but if I AM out in the sun, I have not yet had a flare.  I have also been able to come off of all the supportive medications except 5 mg of Xyzal daily.  Up to this point, I have received 300 mg every 4 weeks.  Now that i have been off of all the supportive meds for sometime, they are are going to stretch my interval to every 6 weeks and start trying to take me off.
This medication has definitely given me quality of life back, but long term, I have noted that my upper arms have become so achy that at times, I cannot reach a glass in a cupboard, put on or take off a sports bra, put on my seatbelt, and cannot sleep with my hands under my pillow as I am used to.  This has gotten progressively worse since starting the injections, and although Aleve will take the edge off of it, it does not give me pain free time.  Also, I absolutely don't want to take an NSAID on a regular basis.  I have tried taking Aleve the day before, icing the injection site, taking Prednisone the day before and a few days after the injections, none of which help.  There were a couple of joint conditions my allergist tested me for when I shared this upper arm pain issue with him, but it was all negative.  I'm wondering, has anyone else who has been on Xolair long term experienced this?  I cannot find anything in the literature except some basic discomfort at the injection site that is documented as a side effect.
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20446944 tn?1504145036
Ive got my first dose three days ago. I suffer from achy muscles and joints from lupus to. I was so crampy the morning I could barely get out of bed. When I got injections I had all sorts of side effects. Even a couple hives and itching. Day three. Still taking benedryl. Hope it starts working soon. I cant take nsaids for pain or steroids. So yes I get crampy too. Sorry for the story.
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20446944 tn?1504145036
Ive got my first dose three days ago. I suffer from achy muscles and joints from lupus to. I was so crampy the morning I could barely get out of bed. When I got injections I had all sorts of side effects. Even a couple hives and itching. Day three. Still taking benedryl. Hope it starts working soon. I cant take nsaids for pain or steroids. So yes I get crampy too. Sorry for the story.
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I am Finally getting my 1st Xolair Injection today and I am blessed that my insurance is paying for it for the whole year! I have been getting hives for 10 years now and I pray this helps!!! Will do a follow up  post with my results.
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I have suffered for 6.5 years on and off, most severe in the last 12 months, done the whole cocktail of AH + pred + cyclosporine. Odd as managed to get down to 2 - 3AH a day hive free and then 2 weeks ago, it erupted again. I have had it in April/June/Aug/Oct and now again in April.... I went to try Xolair for the first time yesterday and got admitted to hospital overnight for fear of anaphalysis, so far I am more covered than before and havent seen any +ve effect, except muscle pain and headaches. I hope it will kick in soon, otherwise I have pred as a back-up. The issue is that I feel that my body rejects all of these suppressants, in fact I felt so upset that in Oct, I fasted for 3 days to try to reset - and post that, the medications managed to work until 2 weeks ago. It does feel like a horrendous roller coaster - and like most people have exhausted all medical paths and yet have no cause/effect or even knowing whether we will get better with time.
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Ive struggled with Chronic Idiopathic Urticaria for almost 10 years now and i cannot possibly list the number of doctors i have seen or the list of medication i have taken in the past 10 years. I have carried a 7-day/am-pm pill box in my purse since before i was 21 years old. I understand the aggravating and sometimes depressing moments in a persons life that struggles with Urticaria. I hope that Xolair has worked for you, I started taking Xolair last December and for the most part it has worked. I get hives here and there but for some reason they're only on my feet/ ankles. If it has not helped you, please know that your not alone in this and others do understand the personal struggle urticaria can bring to your life. Keep your head up.
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I had my injection about 24 hours ago and my body blew up much worse in parts that never used to get them, like my scalp, face, neck and around my throat, for fear of anaphalysis - they admitted me, and I am now just back home. They cannot tell if I am allergic to it or it is simply my CIU manifesting itself. While many patients have had positive responses, I have more dull headache, muscle ache and listlessness. Lets hope things will improve from here on and i shall keep you posted.
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Ive suffered with CIU for 9 months known. They showed up a month after my daughter was born. Every single blood test (autoimmune tests ec), urine tests, skin biopsies and ultrasounds have come back completely normal. So far Zyrtec, Singulair, Zantac, high dose Reactine, Benadryl, and Claritin have failed to stop or even reduce flares. I have been on and off prednisone about 7 times in the past 9 months and am experiencing some nasty side effects as a result, however it is the only treatment that seems to work. I was on Xolair for 5 months with no luck. The side effects are extremely rare but your first 3 injections they monitor your blood pressure and watch you for 2 hours to make sure theres no reaction. Although Xolair didnt work for me it is often the "miracle" drug for CIU sufferers. Its worth a shot for your wife. I am now on plaquinil but it can take up to 3 months to work. I hope theres a cure in sight. I am so frustrated. They have tested me for everything under the sun, as well as tried all the common treatments to no avail :(
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My son 17 yr old son has dermotographia (skin writing) which we believe was onset due to macrobid antibiotic.  Antihistamines worked for a few months to control the horrific itching and raised red welts, but no longer.  Prednisone helps but he cannot be on that for any extended period of time.  Dr. is recommending Xolair and I am nervous about side effects but feel terrible for his suffering.
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I am a chronic Hives sufferer.  I get good results with a homeopathic melt under your tongue pill.  It is Hyland's Hives.  You put three of the little pills under your tongue and let them melt. They do not taste bad at all. I get relief within 10-15 mins. Since they are homeopathic, you can take them every 3-4 hours, if needed.  You can get them on-line or at most health food stores.  I do not leave home without them.  They work way better than Benedryl without any side-effects at all.  Give them a try :)  Good luck!
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