So after years of fighting; you’ve got asthma, you’ve not got asthma. Flare ups where needing steroids every 10 weeks.
We finally had a plan, go to nhs England for Omalizumab if funding not granted go with Kenalog (steroid injection).
Now I’ve been told, to get Omalizumab I need to lose 9kg before putting in an application for the funding. Or go straight to trying Kenalog.
I don’t know what to do! I either wait try to lose weight and hopefully not have my asthma flare whilst doing that (history isn’t in my favour) and fingers crossed nhs England approve the funding. If my asthma does flare in the meantime it’s back to prednisolone. Or I go with pumping my body full of steroids injections.
Oh and I’ve got to decide by Thursday! I don’t even know that much about either of the treatment as no one has explained them to me. Any advice/ personal recommendations would be greatly received.
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Lotti_321-
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I’ve tried omalizumab - I had 3 injections every 2 weeks (it’s either 2 weekly or 4 weekly depending on your weight and IgE levels) for about 8 months or so. I didn’t personally have any issues with the injections themselves other than occasional soreness where they went in! The first few sessions are pretty boring because you have to wait around for a couple of hours afterwards to make sure you don’t have a bad reaction, but after the first few the wait time goes down.
In terms of my asthma it helped a lot with my day to day symptoms and my general allergies were a lot better, but unfortunately I wasn’t able to reduce my hospital admissions or my maintenance steroid dose so had to come off of it. But if I was offered it again I’d say I would definitely try going back on it. But I met quite a few people at the clinic who had been on it years and years and it had made an enormous difference to them!
I’ve not personally tried kenalog but from what I know it’s basically a long acting steroid injection. I know a few people who have had it and I think they generally find that they had fewer side effects from the kenalog than they did on prednisolone (although these were people on maintenance prednisolone, I don’t know how badly you get side effects when you’re on it!)
I suppose one thing to consider is that while steroids can cause weight gain, if they help your asthma having the kenalog injections might keep you well controlled enough to be able to lose the weight for omalizumab? It might be worth asking if you could try one and then potentially move on to the other?
As a side note - I was literally on the borderline weight for omalizumab all the way up to trying it and while on it so I feel the pain with the trying to lose weight for asthma treatments! (But also not really being stable enough for that!!)
A few months back I was facing a similar choice but with benralizumab not xolair 😅
Is there the option to start Kenalog and if you get control of your asthma, then trying to loose the weight and apply for xolair at that point? (This is what they contemplated for me whilst I was waiting for Benra to become available) That way you get the control now, and a legitimate chance to loose the weight before applying for xolair (I assume you’ve met the criteria for it re high IgE etc). I can’t think of any reason why they can’t try this (they give xolair to people on high dose maintenance steroids, so getting controlled, loosing weight, stopping kenalog and getting xolair should be feasible imo)
For some xolair is the wonder drug ‘curing’ their severe asthma and making it a lot more controllable, for others it seems to do very little (I had some benefit on it but not enough to stop me needing hosp once a month).
I got to the point where I was very keen to do kenalog but I got approval and first dose on benra 2/3 weeks after that discussion with local con so didn’t try it out, so can’t give and personal insight to it but I do know of people who have found it very good and a great flare reducer overall, however does come with the same long term side effects of steroids so...
Just something to think about, and good luck! Let us know what you decide and how you get on with it!
Hate the 'is it isn't it' - glad to hear you have a plan!
This isn't personal experience, because I have weird non-allergic asthma not helped much by steroids, so neither of these is an option. However, I do know two severe asthmatics who tried Kenalog and found it helped. They also found that it was much easier to lose weight on it - they had much less of the moon-face, seize every calorie, craving food type side effects you get with pred, so the weight was easier to drop. Js706 and EmmaF91 have already said this in depth but based on this I might also be inclined to start with kenalog - seems it might help your asthma and maybe also the weight loss (though of course may be different for different people), and then if you still need it you'd be better placed for trying Xolair.
Thank you everyone!!! It’s definitely something to suggest as to trial the Kenalog whilst loosing the weight. I just hope it’s not either or!
I think what annoyed/ stressed me out is that I am making a decision on two treatments that hasn’t even been explained to me! I know only what I know through here and dr google!
Thank you Js706! Sometimes they expect you to be mind readers!
It wasn’t helped by seeing the consultant two weeks ago, the physio early in the morning and then the asthma nurse ringing me in lieu of an appointment in August & all 3 of them saying different things!
I am definitely going to ask about trialing the Kenalog whilst trying to lose weight for the Omalizumab.
I’m only 22 (sorry not using my age as excuse! Know people younger than me going through it) but sometimes it’s all a lot to take in , that’s not always well explained and get response from Drs to except it whatever they say.
I know exactly what you mean! I’m 24 so also know the struggle of it all while being young 😞
I definitely sometimes feel like less time is taken with me or that I’m taken less seriously sometimes because of my age. And also there’s a lack of appreciation for how frustrating it is to be dealing with something like asthma while everyone else your age is working/getting married/moving house etc. Sorry, mini side rant there! 😅
OH I did also forget to mention that normally xolair takes about 3 months to build up in the body, so there may not be any improvement for the first few months (which is why they give a 4 month trial at first, which can then be extended if needed). So something like kenalog is more likely to make an impact sooner!
I’ve had both, was put on Kenalog just over 5yrs ago whilst waiting for NICE to decide if Mepolizumab etc was going to be funded in the UK, so for the first 6mths of Kenalog I thought I’d been cured! Amazing, I was back in the gym after 20yrs, I had energy I’d never experienced, actually I had no memory of ever feeling that good.
However more or less @ that 6mths marker things changed!!😢
I rapidly started to experience extreme weakness, within weeks I lost a huge amount of muscle mass, I couldn’t climb stairs, stand in the shower for more than 2mins, hold my arms up to blow dry my hair, shake the duvet to make the bed...the down turn was devastating!!
Then there was the palpitations, headaches, depression obviously! I’d had this tremendous high of feeling better/fitter than ever before, to suddenly feeling as though my body was caving in😩literally!
I had to plead with my Consultant to get me off the Kenalog, his opinion was that of “your lungs are doing well” yes Dr but the rest of my body is giving up!!
So they weaned me off, baring in mind prior to the Kenalog I felt I was nowhere near my worst, it was Summer, yes I was on all my meds incl preds, but I was coping.
Since coming off the Kenalog the past 4yrs have been horrendous🤦🏼♀️, I’m still on Antidepressants, I have Adrenal insufficiency, which renders me to needing 14/16hrs of sleep throughout the day, they’ve told me that my Adrenals WILL NOT recover as they’ve permanently been put to sleep by the Kenalog, so I now have very similar symptoms to an Addisons suffer, I still have the headaches daily, I had Cataract surgery 3yrs ago age 45!
I’m still very weak & have to “manage my symptoms” by planning any chores/outings around a lot of rest/recovery, my joints give me real pain, when you don’t make Adrenalin you don’t make Collagen so not only do you age prematurely, your joints suffer as you need Collagen for tendons/ligaments/muscles, the list is endless & I could go on but I’m hoping that I’ve given you enough reasons to seriously consider crossing Kenalog of your list of alternatives, I’ve read so much about this draconian drug & it’s long lasting harmful side effects, if only I’d of had the mind to do so before agreeing to have it!!, but I trusted my team, I’ve since moved Counties & have a wonderful Prof looking after me now, his opinion on Kenalog is very much the same as mine, his job of picking up the pieces is a very fraught one, I’ve since tried Mepolizumab, but sadly suffered a reaction ( oh yes I’ve become an “Extremely Allergic” person since coming off Kenalog too ) so due to trial one of the others in a weeks time🤞🏻
So please, hang fire, cut those Carbs & grab your chance of Mepolizumab if @ all possible, most ppl I’ve spoken to are having great results with it,
Good luck & be well,
Godbless, Jo xxx
Hi Lotti, I feel your pain!! I have severe refractory eosinophilic asthma as well as Churg Strauss/EGPA. I have been on SO many courses of long term, high dose corticosteroids- both oral prednisolone & also the Kenalog injections that I developed posterior sub capsular cataracts in both eyes & needed to have emergency cataract surgery last year on a private basis as the waiting time was over 2 years on the NHS ~ I was rated at 3.5 on a scale of 0-4 with 4 being blindness & therefore waiting simply wasn’t an option.
Lotti, I can truthfully say that I have never have any problems whatsoever with the Kenalog injections and unlike with the oral prednisolone they don’t cause insomnia and you aren’t as hungry so could therefore lose the weight they want you to lose before giving you the biological treatment you mention.
You also have a tremendous sense of well being on the Kenalog & even though I’m currently on 40mg prednisolone I would MUCH prefer to have had the Kenalog intra muscular injection!! However owing to the fact I’m about to have some surgery as well as some pretty in depth investigations & tests my consultant preferred the freedom of oral steroids-simply because once you’ve had the Kenalog it’s in there for approximately 3 months & would heavily influence any test results.
I have never had any of the biologicals but am currently awaiting treatment with Benralizumab.
Bottom line - if I were in your position I wouldn’t hesitate to opt for the Kenalog IM injection as I have experienced absolutely no downside whatsoever👌👍
Please let me know what you decide to do & best of luck 💐
Lotti-321....Hi...Started Omalizumab a few months ago...inflamation and allergic sensitivity had gotten so bad could not leave my apartment without difficulty breathing. Prednisone, which I had been taking on and off for over a year was no longer working. Within a week of the Nucala (Omalizumab) injection my airway was clear...and now I have only to use my nebulizer once a day and take symbicort inhaled steroid...down to once a day. I do not have Churgg Strauss so I take the injection once a month...100 mg. and it works for me. I never waited around for the drs. to explain anything that I could look up on the internet. There are several biologics out there today...I have eosinophilic asthma which is why I take the lower dose. I did not know there were any weight restrictions involved with these biologic injections. On prednisone and other steriods, it is common to gain wait but if you are very overweight...please try to lose so you can get some relief from these new asthma injections...it can change your life. Steriods have many long term side effects...so I am glad I was able to get off them. Good luck.
Nucula is mepolizumab which is a different biological - and as far as I know weight isn’t a part of the dosing for that so that’s probably why 😊
The weight restriction for omalizumab (xolair) is because of the range of doses they’re licensed to give it at, as it’s based on both IgE levels and weight. So if you have lower IgE you can be heavier and still be within the dosing criteria
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Kenalog?!
Allergic or Asthma 
