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Xolair

I'm one handed typing so forgive my brevity. My ABPA WAS NEGATIVE! My IgE was high at 151. The doc recommends xolair what do you all think? I already have IBS, IC and menieres, all thought to be autoimmune related. I am going thru allergy shots, just started back today. I am about 3 months into it, two shots a week. 

Do I do it to reduce my ige or wait and see if this new med combo holds out as a real solution? The meds I am on seem to have more warnings than xolair. Yes? No? Breo, spiriva, Flonase, azelastine and singulair. Any experiences to share with me? 

Thanks a bunch. Remember, I need to know good reviews as well as bad.

regards, 

gigi

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Comments 84

  • K8sMom2002

    Well, thank goodness the ABPA was negative! 

    So you're on Breo, Spirit, Flonase, azelastine and Singulair, now? I've never been on Xolair, so I can't speak to the good or the bad. 

    I will say that I've had to try a variety of meds in the past for other illnesses/disorders, and I did give some of them a trial period IF my doctor: 

    • had good clear reasons for me to try them
    • could give me benchmarks about what would be an improvement
    • could give me benchmarks about when/how to discontinue them
    • could do labs to check for how my body is doing on the meds

    Does that help at all? 

  • K8sMom2002

    Hey, I've flagged down a member who did some research on Xolair and she said she would stop by after a while. Don't give up on us, okay?

  • Jen

    Tough decision.  I think I'd ask the dr why he recommends the xolair right now v giving the other meds some more time.  The explanation may help you make a decision.

  • Katie D

    HI Gigi, Welcome! 

    How long have you been on your current medicines?  Have you seen any improvements with them?

  • K8sMom2002

    Gigi, I did some google-diving to find out about Xolair, since I'm not familiar with it.

    I found this  For me, it did a good job of explaining the risks and benefits.

    Based on that and what you'd already shared, I'd add this question to the ones you have for your doctor:

    Can I continue to take my allergy shots and current meds with this?

    I'd also put a call into my insurance company. Sometimes drugs like these are covered at a higher co-pay. That might be another calculation to consider.

    When do you have to make your decision?

  • GigiGibson

    I will ask them to let me know if it's covered and what the company is. I have all the time I need I guess. Don't laugh but I actually assist a pulmonologist as part of my job duties. He sees geriatric pts in their homes so it's a bit different. Prior he was ICU doc and teacher so he has never prescribed biologics. He sent me a big email in response to my inquiry for his opinion. I will read it and share later. 

  • K8sMom2002

    Not laughing a bit — the shoemaker will have no shoes! I think it's great that a pulmonologist you know and trust is offering to help you out!

  • GigiGibson

    I read it. He said he is frightened of them but has no experience with them. His friend's wife was on a biologic for RA and went to bed one night thinking she had a stomach flu and "woke up dead". I think those RA biologics are like chemo though, right?!

  • K8sMom2002

    I didn't realize that Xolair was a biologic. They're using more and more biologics (or at least the same biologics) for autoimmune disorders, so it makes sense that they would use something like that for asthma. 

    And I know they've worked on pairing gene therapy with the same drug (Xolair) for a literal one-shot deal with food allergies. That research is in mice, though.

  • Jen

    Gigi – when I was in grad school, I worked at a pulmonologist's office.  Just front desk/filing stuff.  

    So scary to hear about some of the side effects. When I hear about the situations like the one you describe above, I have to wonder if there was something else going on that had nothing to do w the meds.

  • K8sMom2002

    Gigi, did you ever get approval from your insurance company on the Xolair?

    AAFA just did a blog post about it as well.

  • Jen

    Ugh  What a pain  that you have to wait a month.  Hope it's sooner than that.

  • GigiGibson

    So, the newest med I was on was the breo, brio? I don't know o. Anyway, I had been on it 20 days when I got bad off this bout. The new med prior was spiriva respimat. Prior to both I was only on singulair, symbicort and pro air. Then he added the spiriva. It helped for ten day then I relapsed. So, I asked myself did the prednisone wear off or did it really help? Next new med was replacing symbicort with breo. After twenty days I relapse but I've had my pro air in my mouth like a pacifier for perhaps 15 of those 20 days. 

    Determining if I go on xolair seems to be a simple yes at this point. If the pulmonologist finds other ideas I can always stop, right? Thoughts? I've got nothing but time…..lol

  • K8sMom2002

    Has your insurance gotten back to you? I know you said it might take a month, but perhaps if your doctor sent in additional documentation, it might get the ball rolling faster. 

    And yeah, if your doctor says no problem on discontinuing it and the others haven't helped — well, the FDA has approved it for kids, so that makes me think it would be okay to try.

  • GigiGibson

    Yes.  I've only had one shot. From what I see it happens a couple weeks after which is where I am. I've heard some folks manage if they do q 8 weeks instead of four 

  • Mandy

    Glad it is making a difference Gigi! Sorry about the hair loss. I lost half of my hair thickness with the Prednisone over the last 2 years. Thank God I had more than enough to share with a few people. On the pro side, I haven't had to thin my hair in years If your worried, Look into Monat hair products (expensive but I love them) or I've heard Rosemary essential oil in your regular shampoo helps hair growth. Anyways, just glad you are doing better! Hugs

  • Jen

    Is the hair loss a temporary thing?  I wonder if there is some sort of medicine to counteract that side effect?  Maybe something a dermatologist could prescribe?

  • K8sMom2002

    Gracious! How much hair loss are we talking about? Is something like Rogaine a possibility to combat it?

  • GigiGibson

    Hair loss not as dramatic last 24 hours but I had a lot of itching on hands, arms  x 2 days with throat I Ching the s one day, Resolved. 

  • Kathy P

    Glad it's settled down. Do you think it will happen with each dose? If so, will it get worse or better each time?

  • K8sMom2002

    Gigi, fingers crossed that this was the worst of it. I'm glad you're keeping your doctor in the loop. 

    You don't have a history of drug allergies, do you?

  • GigiGibson

    Well this month I had no nausea or aches and only a bit of hair loss one day. I am trying to schedule number four for next week. Overall less albuterol use this month and so far, no prednisone. What attacks I have had were the quiet kind, nothing scary, even if they lasted awhile. So, I'm hopeful it's working. 

  • K8sMom2002

    Wow! Do you think your body is getting accustomed to the medication and that's why? Did your doctor tell you that the side effects tend to taper off? I've heard that about some medications — basically that the worst is at first and to hang in while your body gets acclimated.

    How expensive is it? Does your insurance cover all/most of it? 

  • GigiGibson

    I have found chats where folks say they acclimate and others where they just buy wigs and live with it. I honestly wondered if I had been given a placebo because I had no side effects. My doctor said he has never had anyone with hair loss but is aware of it. He was going to stop if it continued. I was ready to give up and then had a bad flare and decided I had no choice but to keep trying. There is a copay program (seems automatic, no income questions asked) that leaves me with no copay for a year

  • K8sMom2002

    Sounds like things turned out well after a rocky start. I'm glad to hear that there is a co-pay program that helps out with the cost. Will the shots continue to be spaced out? Do you go into a doctor's office for it or is it something that potentially you might one day be able to give yourself?

    I'm not familiar with how Xolair works as far as the injections and duration — so that's why I'm asking, for future reference. 

  • GigiGibson

    It has to be premixed 20 minutes before admin and then you have to wait an hour after. The specialty pharmacy calls each month to get me to ok shipment. They bill insurance $2000 for the two shots. My dose is 300mg, 150mg in each arm 

  • Kathy P

    It really sucks when you have to choose between med side effects and the actual disease! I hope you are among the lucky ones that acclimate.

  • K8sMom2002

    Ouch on the cost, and ouch on the two arms! Do your arms ache afterwards? And how do you while away that hour there? 

    I hope your insurance doesn't have a life-time max. I don't think that's the case for most insurance these days, though, right?

  • GigiGibson

    Well I got my shots Monday and by Wednesday I was getting tired, Thursday moreso, Friday nausea and fatigue arrived. The nausea is gone, just hint this am and little appetite. I am good for nothing though, I'll do a task then have to rest 15minutes. Aaron talked me into a nap at 430, it did help. Hair loss is not too bad right now. Skin and hair oil production really low which helps when I want to skip daily shampoos for every other day. I hope this passes quick. Just feel like crap. Breathing is decent though!

  • Kathy P

    Sorry you feel so cruddy. Hope it passes quickly! Glad the breathing is good though.

  • GigiGibson

    Thx ladies. I think it's a little better. Don't feel like I can't hold my head up. Thankfully have a thick layer of ice on the road so one more day to recover.

  • K8sMom2002

    Gigi, on the fatigue. I'm glad it's getting a little better now. 

    Do you recall if the fatigue was about the same as the first rounds of Xolair? I guess what I'm hoping is that as your body gets accustomed to it, the Xolair won't be as bad going forward. 

  • GigiGibson

    I feel ok as long as I sit. I walked outside for about ten minutes then came in and took down three wreaths. My knees and hips hurt in the joints and I got so tired and out of breath. I'm pretty useless unless I'm sitting. Joint pain stops when I sit, hurts to stand. Little nausea. I decided my breathing was doing so good I would try to reduce budesonide to daily. I was coughing and tight within three hours. Did budesonide and I was fine. The truth is this IS my state of "better" but I can't do some things I want and need to do. I guess that's the trade off for breathing. Hubby is just amazing and can't do enough to help me. He waits on me hand and foot and never seems to mind. He is a blessing to me. I can breathe and I have him so all is well

  • K8sMom2002

    What a great attitude, Gigi! You're hanging tough and counting your blessings. 

    I'm hoping these side effects will fade faster than with your last shots … it's absolutely frustrating when you have rest every few minutes in order to get strength enough through your day. I wish you didn't have to "trade off" for anything. 

  • GigiGibson

    Hi Kathy, yes thanks. The grand baby and I danced this afternoon and I ironed my mountain of clothing. Rested up now going to look at new couches. YAY! I need to get rid of these dog sliver and dander infested couches

  • GigiGibson

    Got a new sofa and loveseat, coming next Saturday. Leather, dark grey. Should help with allergies!

  • K8sMom2002

    I love, love my DH's leather chair. It's so much easier to wipe down than our sofa. The only problem is making sure he doesn't put his big clodhopper on it. He does that — tucks his foot under him WITH HIS SHOE on. 

    I think the dark grey leather will be beautiful! You'll have to share pictures!