Continue with Xolair or not??

[JustR]

Hi, following on from my last post where I explained I experienced really bad asthma flare ups after my 1st and 2nd Xolair injection, I managed to speak to my consultant and delay my 3rd injection for 2weeks so I could get better. (Next injection due (7/08)

I’m now conflicted wether or not to continue with treatment as I’m feeling much better and back down to 10mg maintenance prednisolone.

Is it too early to stop? Do I need to give the 3rd and 4th shot a go?

My asthma is a mix, Its not just allergic triggers. How will I know if this treatment is working or not? My consultant has mentioned other biologic treatments might work better, so why risk another bad reaction Im thinking in my head? So confused..!

If anyone has gone through anything similar i would love to hear your thoughts. TIA😊

[hilary39]

I'm so sorry, how frustrating. Were you able to rule out any other variables that could have triggered you aside from the Xolair shots? Since it happened twice right after both it does seem like it could very likely have been the trigger. How frustrating. Is that listed as a possible side effect in the Xolair packaging? What does your GP say?

I'm in a Xolair group on Facebook and a lot of people have had surprisingly good luck calling up the company with their questions. Perhaps you could give that a go and see if you can get answers from them, too?

I've been on it for a year and a half and it took about six months to kick in for me. However, I didn't have any negative experiences like you seem to (except maybe hair loss, can't tell if it's from that or my adrenal insufficiency but I am losing more hair than normal).

Take good care and listen to your instinct + GP and keep doing research if you can.

Keep us posted.

[Tree20862 in reply to hilary39]

I have not had Hair loss. I just got my 51st dose.

[hilary39 in reply to Tree20862]

It's a side effect for some people in my online Xolair group (and listed as a side effect with the med) but it can also be caused by low potassium and adrenal issues which I have so I am never certain what is causing what

51st doses! How is it working for you this far in? I just had my 16th dose.

[Tree20862 in reply to hilary39]

I had a rough start. I started in 2016. A couple of doses in, I had a flare, we blamed it on fall allergies. I was on steroids for 6 months. I stuck with the Xolair. Once I weaned off, I went 5 mon without steroids. Then I went 15 months without steroids. Then I got a cold that became a sinus infection. Then I was off steroids for 12.5 months. I got sick and got a sinus infection.

That brings me to today... Currently off steroids 6.5 months and counting.

Since starting Xolair, I have been on steroids 3 times for 12 days each time. No need to extend any of those courses. I call that a win.

[hilary39 in reply to Tree20862]

That is a great way to gauge it! I was steroid free from last September until June of this year and it felt great. Hoping to last a year at some point. I'm pregnant right now so my asthma is a bit miserable (it often worsens in pregnancy + I had COVID which made my lungs weaker than normal) so when I'm over that hump I'm hoping to find some relief!

So glad Xolair is helping you get your asthma under better control.

[JustR in reply to Tree20862]

Hi, sounds like your most definitely winning and that’s great. I’ve been on steroids for over 18months now and time after time I’m always trying to wean..I always struggle to get lower than 10mg!

Looks like after speaking to my consultant he wants me to give the 3rd a go on Friday so going to keep my fingers crossed and stay positive🤞

[Tree20862 in reply to JustR]

10 mg is a good low point. Keep working on staying healthy.

I was on 40 mg for a lot of that 6 months with occasional bumps to 60!

[JustR in reply to hilary39]

Hi Hilary, It’s definitely been frustrating. The only thing that was different before starting treatment was a bad chest, so GP just put me on antibiotics and high dose of pred. I have to say looking back I felt quite poorly for just a regular chest flare.

I’ve been taking note of everything and the only thing that’s the same is about 4days after Xolair I start to feel tightness and Short of breath.

My GP is great but has no deeper understanding of biologics so it’s hard to get advice from her.

I’ve been researching on a FB group and noticed some people have experienced flare ups before feel the benefit. I remember you saying it took you a little while too.

Managed to speak to my consultant yesterday and he understands my concerns but has suggested giving the 3rd treatment a chance. He seems to feel my pred has been more stable now indicating I should feel a little stronger this time...let’s see😬

Thanks for replying back to me, it really does help when people share their experiences and thoughts😊

I hope your keeping well through your pregnancy x

[hilary39 in reply to JustR]

I agree that it's nice to hear people's experience and thoughts here I don't know anyone in my day to day life with asthma or allergies nearly as bad or debilitating as mine. I often find my friends and family are a bit baffled by my constant flare ups. I think it's because so many people have an image in their mind of asthma as a little kid using a reliever inhaler after a tough baseball game.

There is an asthma researcher and pulmonologist in the states Sally Wenzel who has advocated for giving severe asthma its own name so that it is better recognized and treated in hospitals by doctors since it has so many weird features that are not true of mild or moderate asthma. I love that idea.

Keep us posted on how you do after your next shot. And maybe consider calling the company to see if anyone can answer your questions there about whether the breathlessness is a common side effect (esp since you said your GP doesn't know much about biologics).

Good luck!

[JustR in reply to hilary39]

Hey..just a quick update..

Had my 3rd injection Friday and so far so good..I’ve had the usual side effects of feeling achy, fatigued and headaches..a slight tightness of chest but only lasted a day!

So fingers crossed maybe it’s making its way into my system? Today’s the 5th day and I’m feeling ok..let’s see how I get on from now going forward😊

[hilary39 in reply to JustR]

Great news! So hoping you stay well and xolair works for you

[JustR in reply to hilary39]

Thank you and fingers firmly crossed🤞

Now I’m just thinking ahead..I really want toconsider weaning down past 10mg of pred as I’ve never been able to get lower..

Thought I might try very slowly on 9mg..for a couple of weeks and then 8mg etc..any experience with this?

[hilary39 in reply to JustR]

What does your dr say? How long have you been on pred?

[JustR in reply to hilary39]

I’ve been on it since Jan 19😕

My Consultants said see how I feel and try if feeling stable..I don’t want to rush and feel rubbish but very desperate to at least get down to 5mg as I think I can do it..but it’s just the unknown😬

[hilary39 in reply to JustR]

That is a very long time and your body is likely dependent on the steroids. I can understand how frustrating that is having been on pred for long periods many times in the past!

I don’t want to give medical advice but I can share my own experience which is that steroids can be very hard on your adrenals—your body basically stops making its own cortisol because you are taking synthetic cortisol. You could consider getting your cortisol tested to see how your adrenals are doing. If your cortisol is low, you may need to taper very slowly because otherwise you could have what’s called an adrenal crisis (your body doesn’t have enough cortisol to meet its needs). Those are v dangerous.

I developed adrenal insufficiency from taking too much prednisone so now I have to take hydrocortisone tablets every single day for life :/ hopefully your cortisol will be fine (it is for most people) but it’s always best to be on the safe side when tapering pred after a long period. Some people do just .5 or 1 mg at a time and taper over a period of several weeks or months.

Can you talk to your GP about all of this?

I really do empathize and understand why you’re eager to get off it, pred can have so many side effects—someone on here called it the devils candy once and I liked that.

[Tree20862]

I have only had occasional mild headaches with my xolair.

If your consultant thinks a different biologic might help, maybe give it a try.

For me, it took 9 monthly doses to see an improvement with my asthma.

[EmmaF91 Community Ambassador]

Hi

I’m not sure what side effects you are having, but it would be worth talking to your con or their asthma nurse to discuss it. I switched off of xolair and mepolizumab due to side effect. I’m currently on benralizumab but my con is talking about dupilumab as that does both eos and atopic asthma (as I am still being hospitalised with allergy related asthma).

If the side effects are too much and your con is discussing another MAB then talk to him. He’ll have to take your case to panel to get a new MAB approved so it may be they suggest doing one more dose of xolair until the new one is approved, but if you can’t live with the side effects then you need to discuss a switch!

Hope that helps

[JustR in reply to EmmaF91]

Hi Emma, after my first and second dose I noticed about 4days in i experienced a really tight chest and shortness of breath. Enough to have to increase back to 40mg of pred on both occasions and then wean down over the weeks. I’m not sure if this is possibly due to having a bad chest before treatment or the actual Xolair? I was feeling very weak at the time and asthma was already flaring.

My consultants been understanding and after talking to him yesterday he feels I should give the 3rd a go and then decide if others are suitable, I’m just scared at the thought of another flare and having to feel poorly for the next few weeks. But I’m going to stay positive and hope for the best. I do feel stronger now and I’m glad I delayed the treatment for a couple of weeks.

The only thing I’m concerned about is how quick they’ll try and switch me to another biologic..? Like you’ve mentioned he will have to go back to panel and review again..this took so long the first time.

Thanks for your thoughts😊

[Tree20862]

It is my understanding that the reaction is more likely Xolair in the first 48 hours.

Fingers crossed that this dose in better for you.

[Tree20862]

Update?

[JustR in reply to Tree20862]

Hi, I’ve been meaning to update!

Sadly after a good chat with my consultant we have agreed to stop Xolair..

I didn’t end up having my 4th.

I definitely feel it wasn’t for me as the side effects I experienced have now all stopped and my asthma is more controlled than before and I’m more active than before without relying on ventolin most days. Managed to stay on my maintenance dose of 10mg pred and determined whilst waiting for another course of action with biologics to try and reduce.

The journey continues..

I hope your keeping well😊

[Tree20862]

I'm ok. Fall allergies and smoke from the fires on the West coast triggered a small flare. Nothing that albuterol couldn't fix 😁

Xolair isn't for everyone. Keep listening to your body.

Peace.

[JustR in reply to Tree20862]

Oh gosh..stay safe out there..

Yeah it wasn’t for me..and I’m glad I spoke up and knew the side effects were all impacting me.

Will keep you posted if and when there’s any plan🙈

[ccccc]

Hi JustR

Really interesting to find your post as I've had two shots of Xolair now in the past two months and have had the same experience - had a nasty flare-up after the first where I needed a few emergency packs of steroids, started with a bad chest on the night of the first injection; and had my second last week and have had terrible croaky voice/sore throat/fatigue/sinus pressure ever since and a cough and wheezy chest. I'm really surprised it's giving me such bad side-effects to the extent I am considering not going carrying on with it. I've waited so many years to become eligible (I have low cortisol/adrenal fatigue as currently on daily maintenance dose for over a year now and I see from your other post you stopped taking Xolair in the end. Have you been offered any other type of biologic therapy, as I'm worried if I stop I may not be eligible for anything else?

[JustR in reply to ccccc]

Hi ccccc, I’m sorry to hear your having side effects with Xolair. Just like you I was surprised I reacted so bad to the injections. Before starting the injections my asthma was controlled, no signs of a flare and I was taking a maintenance dose of 10mg pred.

Sounds like we’re suffering with the same issue of being stuck on pred and now the adrenaline fatigue/insufficiency which is just something I’m learning to live with everyday..but it’s tough as I’m sure you know too well.

I do feel like I’m being brushed off by my asthma team at the moment. I’m not currently meeting the criteria for alternative biologics and now they just keep telling me to keep trying to reduce pred..which I’ve been trying to do for the last 2years!

My asthma has been stable for the last year with flares when picking up virals etc but I’m sure that’s partly because I’m on maintenance pred!

I was advised to stick the initial 4dose trial of Xolair as it does differ from person to person on how it can work.

In the end I knew it wasn’t having a good effect on my asthma so I didn’t continue further. I hope your considered for alternatives if Xolair doesn’t work🤞

[ccccc]

It's interesting we've had almost the same experience as when I reported my side effects - which was my asthma flaring up - the hospital team said no-one else had reported this before, which made me think it was just a flare-up related to weather. And now I've developed laryngitis after the second dose. I wasn't expecting this level of side effects. I'm sure you had the same feeling where you don't want to stop it as it takes so long to get it, but it does worry me what it's doing to me. I know what you mean about feeling brushed off, I was with another hospital for 4 years and I just felt like I was a nuisance because I didn't fit into their little box of how severe asthma should be treated. I hope you get the treatment you need. it's so tiring living with asthma on top of the side effects the steroids give you.