Hi there! I'm new here. I have severe allergic asthma. I take Symbicort, Spiriva, Zyrtec, and Flonase daily. I just started Xolair (Omalizumab) but I'm already worried it might not be a good fit. I feel exhausted, have had insomnia for days (I hadn't realized histamines play such an important role in regulating the sleep cycle), and generally don't feel like myself. I'm going to give it a few more weeks but if I don't improve I'm not sure I'll keep going.
My last pulmonologist had wanted to start me on Nucala (Mepolizumab) even though my Eosinophil count isn't that high (200). I'm wondering if that may be a better fit for me since I'm thinking IL-5 (which it suppresses) probably plays less of a role in regulating the body's rhythm than histamines do.
Does anyone on here have experience switching from Xolair to Nucala or vice versa?
Thanks so much in advance for any insight you may have!!
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hilary39
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I've been on Xolair for 7 years come September, and the improvement I've seen came gradually, not immediately. But the difference has been phenomenal. I haven't had an allergic asthma attack since 2017 (and I have severe uncontrolled allergic asthma, e-asthma, HES, e-emphysema as a result of the HES, etc). I'd encourage you to give the Xolair a longer try. Have you discussed with your doctor about your other meds, and maybe changing them or the timing of them, to help with the insomnia?
Because of the HES, I was on Xolair and Nucala at the same time for about 10 months. Unfortunately, the Nucala did nothing to lessen my eos load which was extremely high -- thus the lung damage, but it DID trigger zoster-virus corneal ulcers. Three of them. That took four months to heal. For an entire month I was not allowed to read and was supposed to spend regular breaks with them closed with cool compresses -- I normally read ingredient lists if there's nothing else, so that was torture. I stopped the Nucala bec ultimately it might have meant permanent vision damage. I already have serious complications from steroids -- I didn't want to add vision loss to it!
I'm now on Fasenra and Xolair and the difference in my life (since last June) has been transformative. It is nothing short of a miracle (and I'm not a religious person). My eos has been zero since the first injection, and every month since (I've been on maintenance since last September). And each day, I feel a tiny bit stronger. I wake better, sleep better. I have been classified as "terminally disabled" -- which means the doctors didn't think I'd ever improve enough to be able to work again, unable to walk more than a few feet. Just tremendous problems. They are slowly improving, but in areas we didn't even anticipate.
Anyway, I recommend you try the Xolair for longer. It took me a year, before I could honestly say I noticed a difference I could attribute to the Xolair. But I haven't needed daily antihistamines in more than a year, Flonase and Flovent are only if I'm developing upper respiratory infections -- not since December (despite the bad pollen in DC the spring), and no asthma since last May -- 51 weeks!!!
Wow what a journey you’ve had. I’m impressed by your upbeat and pragmatic attitude—I strive to do the same as there is no real alternative but I still get stressed and sad about the fact that my asthma had become so debilitating.
I’m so sorry to hear about the nucala sores, sounds terrifying. I too read hours a day so that would drive me crazy!
Thanks for the advice about the xolair. I’m sleeping a bit better and hoping it’ll keep improving as my body adjusts.
Take good care of yourself and thanks again for taking the time to share your experience and story.
Thanks for the kind words, Hilary, but I've gone through the -- did they call it? the "sloughs of despair" myself more than a few times. I've learned a few things to help trigger resilience and learned to call quickly for help from a psychologist when I'm afraid to be slipping back into deep depression (that's a whole 'nother story, but tied in). I've learned to INTERRUPT behavior that's indicative of depression, so I don't fall into that pit. But that's also what I find so useful about groups like this -- and frankly, Facebook helped get me through the worst period of my life in 2012-2015. Old friends around the world were awake when I couldn't sleep from pain, and would give me other things to talk about -- their kids and grandkids, jobs, marriages, homes, troubles. They'd be wonderfully supportive and listen for hours if I wanted to talk about my troubles, but I found it most helpful to listen to them and know the world was still turning, I was still on it -- and one way or another, that cycle would end. I thought it would end with me dead, but I got to peace with that.
Anyway, I'm pulling for you. Good luck with the sleep. After years of disrupted sleep bec of meds and other things we've finally developed a schedule that works FOR ME. And now, if I have to go into the hospital -- my docs specifically instruct the pharmacist to dispense from my meds things they don't normally stock (so there's no adjustment when I get home) and according to my typed up dispensing schedule, not theirs! Boy, was THAT a battle!
Good luck! Let me know how you are doing. I'm trying to launch a blog this weekend on all of this, so I'm around, but I might be catching up on sleep next week
I’d love to read the blog! Would you be open to sharing the link? That is a lovely thought about using Facebook to stay connected from home. I’m on vacation and had a flare up and am miserable and have tried to take that to heart as I plan to take a few days off the fun which stinks after having planned this trip for a year!
I'm not sure if it's against the rules, but here goes. It's not like I'm making any money or selling anything. it's asthmaodyssey.com
It's just starting, so a long way to go, but it might give you some tips. Let me know what you think. For now, comments are disabled -- I was advised to wait and get things a little more stable before coping with spam-bots and major anti-spam plugins. But soon ... Please share it with others, if you think it might be valuable.
I'm sorry about your flare messing up your holiday -- I've certainly been there. Now the problem is more often in recent years that I couldn't travel at all. Now I manage a trip once a year to visit my mother in Texas, and maybe a briefer trip by train or something to New York or other destination closer. I miss traveling, visiting family and friends. I miss working internationally. But life changes. Facebook really did help -- so when people pan it (and I agree it can be all the horrid things people say), I always have to say, "But ..."
Hope you are getting some sleep, it makes such a difference in how we feel and can fight.
One other idea on your sleeping -- what time are you getting your Xolair injections? I've found fewer issues when I get them in the morning. I can work that around my schedule, and I've been on them so long I doesn't seem to matter anymore, but you might try changing that.
That's a good idea to get them in the morning--I'll make sure I do!! I am in an adrenal insufficiency crisis now from tapering the steroids and pretty miserable. At least I'm home in my own bed!! So hard to manage this asthma stuff and all the unexpected ups and downs...
Part of it is learning how your body handles the tapering best. I do best if I get the entire day's allotment (say 60 mgs) at one time and take it in the morning. I will feel like crap for a while, but it won't do as much of a number on my sleep (well, that's not completely true -- I still can't sleep, but I can sort of rest. Zone out in a dark room watching old movies I don't have to think over).
When I'm coming off it, my body actually acts as if it's addicted, and frequently will throw a relapse for no real reason -- just because it's craving the steroids. I hate that! Do you do anything special? The cramping and bone pain are always so hard to deal with for me -- but I've found extra magnesium can help a little (not too much mag or you'll spill other electrolytes), but it does help. Soaking in an Epsom Salts bath helps the pain and itching.
(Remember when you first began taking steroids, how you'd get the steroid high -- I loved it. That's when I'd scrub grout with old toothbrushes and other crazy stuff. I haven't had that kind of reaction in more than 20 years.)
I hope you get through it well, and soon. It's 1 am, I have to get to bed. Been up writing and now I'm falling asleep on my keyboard. Feel better!
I have been on Xolair for almost 3 years. It took 9 months to see improvement. I continue on Symbicort, Arnuity, Allegra, Singulair, (and nasal sprays, as needed.)
I took Xolair for 10 years and yes it took about 6 months to notice a difference, but it did a great job controlling my allergy flare ups as well as my asthma. Then about a year ago (year 10) I noticed it stopped working and I wound up switching to Nucala. Within 1 month all my allergy symptoms came back full force. I have been on Nucala for a year now and have not noticed a difference of whether or not it is helping. I wish you the best for figuring out what works and doesn't work - remember everyone responds differently.
Thanks so much for sharing. I am trying hard to be neutral in case it doesn’t work or doesn’t work for very long etc. so I’m not crushed (it’s hard not to idealize a new medicine when you’re miserable! sorry to hear your allergies are back full force and that the nucala isn’t helping
HI! I Switched from Xolair to Nucula and truth betold I wish I could have injection s at the same time. If that was possible I would be the happiest allergic asthmatic in the world. The Nucula didn't work for me as well as the Xolair. My injection of choice would be the Xolair. I would check with your pulmonologist to see if he or she could start you on a small dose of sleep medication, that's around the time I started mine. But it was well worth it. I was on Xolair for 5+ years leading up to and after my lung surgeries. Good luck!
Hi Hilary. I have no experience with Nucala; however, I have been on Xolair for 9 months and it is working pretty well, along with my SABA, LABA, and Anticholinergic. It is my understanding and experience that Xolair may take several months before you note improvement. We are all different. I have elevated IgE (Allergic Asthma). My Eosinophils were about exactly what yours are. I still have symptoms, but can exercise some and don't have as many bad days/weeks as I used to have. I am trying to stay off of Steroids. I hope this helps!
Thanks for sharing! I'm so glad everyone posted on here sharing their experience that it took anywhere from 6-12 months to start working. My doctors had told me to look for an improvement within the first few months so it's so nice to have other perspectives from real-life users. I am trying to stay off steroids, too! I just tapered off my course and went into an adrenal insufficiency shock and am recovering from that no, it was pretty traumatic. Hard to live in this hypersensitive bodies of ours...!!
It only took 3 months for me to notice a difference on Xolair - from August to November. I assume the improvement was due to the xolair. I recently ran out of my Breo Ellipta, so I have had a few bad nights. Xolair and Breo tomorrow!!
Yikes! Hope you can get it refilled asap. Thanks for the clarification. I'm going to be patient I had secretly hoped it would work immediately which it of course didn't...
It doesn't work for everyone, but for some people, it makes a big difference. When I began Advair 500\50 about 20 yrs. ago, I was told that it would not make an immediate difference. It made a dramatic difference within 15 minutes! It worked well for me for 15 years - until it didn't. Apparently my asthma changed. Good luck with the Xolair! I still require a Short-acting Beta Agonist (rescue inhaler - albuterol), an LABA (Long-acting Beta Agonist)/ Anti-muscarinic - currently on Trelegy Ellipta (fluticasone furoate, umeclidinium, & vilanterol), as well as an additional 100 mcg of fluticasone furoate - Arnuity Ellipta. Everyone's asthma is different. It's a matter of identifying your triggers, your asthma type, finding a regimen that works for you, and following that regimen, including avoiding additional stress and getting the right amount of sleep, exercise, and a balanced diet that takes into consideration any food allergies.
I have been taking Xolair about 1 1/2 years. My recently new ENT did blood work & asked when I was going to see my Allergist again. I said soon & she asked me to share my low immunity scores with him. She must have faxed them to him also. When I showed my scores to him, he chuckled & pulled out the same sheet I had, but had added some scores in ink next to the printed scores. He said, your ENT is very good on picking up on this immunity problem, but the scores I wrote in are your scores from 1 1/2 years ago before you started Xolair. Your scores are below normal, but they are much higher than they used to be. I never had realized that my immunity (Gammoglobulin type scores - I think were the 3 scores the they were on the paper) meant I had low immunity. As an elementary teacher I was always getting sick & getting well was a long process. Frequently my sinuses would get very congested due to all my allergies which lead to a sinus infection which frequently lead to asthma, which frequently required large amounts of antibiotics & many times Prednisone for a long period b/c they would hold off on the Prednisone or start at too weak of an initial dose which ended up having to upped again or sometimes a 3rd time. Now that I'm on Xolair, I rarely have coughing or wheezing asthma symptoms. About a month ago, I got a sinus infection that my ENT cultured & it was MRSA. I was allergic to the #1 antibiotic choice so we tried another antibiotic but it didn't kill it & Prednisone was not strong enough. Tried #1 choice next even though I had a reaction to another drug in that drug family. I lasted 8 days on it & had to stop. Antibiotic #3 & 3 increase in my Prednisone & started having much shortness of breath and has hospitalized for 4 days. Got a newish IV antibiotic & it killed the MRSA & shortness of breath diminished while in hospital. The day they discharged me, I was starting to have a increase in shortness of breath. Doctor realized my Potassium had gone down significantly & sent me home after giving me 40 mg more Potassium than I usually take daily. Also, he called in a Rx for 40mg of Prednisone on a 3 day taper of 10mg each 3rd day. I immediately went back to my ENT who did a scope to make sure Sinuses were good. I told her that I refused to take 40mg again without having a diagnosis, especially since Prednisone can cause Potassium to to be lowered. Well several days later, I have started taking the 10mg of Prednisone that had been my prescribed taper dose + adding 10mg more each day in early evening when I noticed my Pulse-ox starts dropping in the low 90s. After the 2nd 10 mg, my Pulse-ox goes back up to 97-99. Also, I start getting cramps in my feet as the day progresses so I take 10 extra mg of Potassium & feet cramps goes away within an 1 of me taking it. I would go to the doctor except I went 700 miles away with my sister to drive to her summer house in the mtns for 3 weeks in hopes if recooperating since they discharged me from the hospital last week. Today I got an appt with my sister's doctor after the weekend & they will see if the 10 extra mg of Potassium is getting my level up to normal or if it is too much. Also, I will ask how to take the Prednisone if need more or how to taper. Today my chest was very tight & I wasn't doing anything. I plan to donate my body to Science b/c I have too many medical problems & maybe it will help someone's research. For now, I just want to be able to walk in a grocery store & not need a motorized scooter or have to sit in the car. This long term shortness of breath happened about 3 years ago where my Pulse-ox dropped by walking a short distance in the ER. I was hospitalized & the doctor gave a HUGE, HUGE 2 DOSES OF PREDNISONE + Potassium b/c it was very low. I think those big Prednisone doses caused my 4 mths of shortness of breath. Being on Prednisone for the last month may be part of what is causing my symptoms now. Prednisone is an awesome, but horrible drug! I hope this info helps someone else
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