Xolair

[Busybake]

I’m new here. I’m about to start Xolair and I’m a little nervous. Anyone out there tried Xolair? Did it work for you? Did you experience side effects? Thanks 😊

[d2read]

I began using Xolair in 2012, as part of a trial for severe asthmatics. The first thing I noticed was that mild reaction to most vaccinations, when you feel a little achy for a couple of days. But by the second dose — in the middle of ragweed season, a bad allergy for me, I noticed that it wasn’t bothering me quite as much.

Xolair didn’t give me an immediate relief for all my allergies — I have a lot of them, and they were quite severe. But gradually over the months I noticed I needed less of my prescriptions for my eyes and sinuses, had fewer rashes. And when I did have an allergic reaction it was less severe and ended faster than normal.

About the same time, we discovered that I have a rare disease, HyperEosinophilic Syndrome - HES, that was responsible for making my asthma much worse, and less responsive to medication. It took a number of years, and the top researcher on it at the US National Institutes for Health to figure out both what role my allergies were playing and how Xolair was helping to reduce the damage. Ultimately we were able to combine it with another biologic specifically for HES, and the two together have given me years of life I didn’t expect otherwise.

Biologics are not casual drugs — they are quite serious. And, like all biologics, they come with substantial risks.

So I would never suggest someone take the medications if they have seasonal allergies controlled with OTC antihistamines and regular allergy immunizations or other treatments.

But, if you’ve got a history of anaphylaxis, or severe allergies that are not controllable and that trigger potentially serious asthma or other respiratory infections, AND YOUR DOCTOR FULLY EXPLAINS THE RISKS AND BENEFITS IN YOUR SITUATION, then I would strongly consider it.

There is one other consideration if you are in the US. Xolair and the other biologics are prohibitively expensive.

Given the current political situation in the US — and the threat to repeal the ACA (Obamacare), much less the fact that some states refused federal money to allow more of their citizens to get coverage under Medicaid — you need to discuss frankly with your doctor the cost of the medication.

One thing they may not be aware of, the manufacturers have programs to provide the drugs free to patients who need them and cannot afford them (and who don’t have insurance that will cover them). I’m not sure what the cost is per year now, a few years ago it was about $60,000 per year.

But it’s also important not to start and stop the drug as some people do.

Applying for the compassionate-use program will require your doctor’s help to do the application on your behalf, so you’ll need to be prepared to discuss your situation.

I have been very grateful for Xolair. In the 8 years I’ve been on it, I still have allergic reactions to some things, but many things that used to knock me for a loop don’t cause a blip now. I think it is definitely worth trying.

Good luck!

[hilary39]

There are a lot of posts on here about xolair if you search the archives Many people in this group have found it to be a game changer. It has helped me take prednisone less often but my asthma is still severe. I hope you have a great experience with it!!

[Thebird]

I started Fasenera 15 months ago and am still very nervous about it! I postponed going on biological medicine as long as I could, because of my fear. I feel that regular allergy shots would be better as your body builds antibodies. Biological medicine is short term and you can get sick when you’re shot is delayed. I am currently almost 1 month behind on getting my shot, while insurance decides if they will pay or not. BTW you need to be really careful when on these shots. I got a Shingles shot in the AM and then went to get my Fasenera that afternoon, luckily I told my Dr and She held off on the Fasenera. Overload!!

[asthmaK]

I took Xolair for almost 10 years and loved it. Of course I had the highest dose - 3 shots every two weeks. It did a great job at controlling my allergies so I didn't even need to take additional allergy medicine. It also significantly reduced the amount of prednisone I took. At year 9 it stopped working, it's like I hit a plateau and since I was taking the max dose they couldn't do anything to adjust it, so I stopped taking it. Within a month I noticed all my allergy symptoms came back. My insurance covered it except the first month of the year because of our high deductible plan. But there's a foundation in the states that I qualified for that paid that bill for me.

I wish you the best.

[Tree20862]

I just got my 54 dose yesterday.

It helped but took almost a year to get results.

I carry my epi pen for 48 hours, as recommended. {knock on wood} I haven't had that kind of reaction, yet. I sometimes get a mild headache. Once I had a little cough in the office after my dose but it was treated with an extra dose of allergy med.

Good luck. Keep taking your daily meds, rescues when you need it.

[Claire-Rose]

I recently started xolair and it is amazing the only side effects I got was feeling a bit tired. Good luck

[Tree20862]

I started Xolair 4 years ago it took almost a year to see an improvement. The first 6months I was on steroids. Since then, I have not needed them as much or for very long.

I have not had any major problems with my injections (knock on wood).

[Tree20862]

I replied twice. So sorry.

[Johnmc1100]

I have been taking Xolaire for 6 years now. It has literally changed my life. Previously, I would end up in the hospital twice a year with asthma exacerbations. Since I have been on Xolaire, I have not had to be hospitalized at all.