biologics

[hoven]

I have just seen a different GP at my surgery and mentioned the biologic I am on and the side effects it is causing me and he said 'oh yes there are loads of side effects with biologics'. No one has ever said that to me before, my consultant always denies it. now I feel vindicated!

[Lysistrata Administrator Community Ambassador]

I'm not on a biologic but it seems ridiculous to deny that some people will get a lot of side effects, even if all/the majority don't! It won't be everyone (if the safety and side effects were too bad the drug would probably struggle to get approved) but it's inevitable it can happen for some people, and that some people may have more side effects or find them harder to manage. Just denying this is silly of your consultant when the side effects and how common they are will have been recorded in clinical trials, continue to be recorded as 'post-marketing surveillance' after the drug's approval, and will be listed in the drug's label and patient information.

I don't know if he's trying to persuade you to stay on it or thinks they'll settle, but if so it should be an adult discussion with you which acknowledges what you're experiencing and the impact on your life vs the effects of not being on it, and includes a discussion about whether you could try a different one. It can help to switch biologics if you have that option. I have a friend who found mepolizumab (Nucala) helped her asthma but the side effects were horrible to experience. Her team switched her to benralizumab (Fasenra) where she had way fewer side effects, and then to dupilumab (Dupixent) to help more aspects of her asthma.

If the consultant has found the side effects of what you're on tend to settle then he should let you know that too and discuss whether you want to wait or consider switching, if you can. Just denying it and making you feel crazy is not how to manage it. I do wish more healthcare professionals would actually TALK to patients properly about this kind of thing!

[hoven in reply to Lysistrata]

Exactly! when Mepo was first suggested to me I asked the eminent professor about side effects. He said 'there aren't any'. I kept my disbelief to myself. I stuck it for as long as I could and then started on Benra. More aching limbs and a few other things and was told 'nobody else gets wobbly legs! I gave up and decided to just get on with it!

[Poobah in reply to hoven]

Sorry to butt into your conversation, but your eminent professor sounds just like mine. In the past I would ask questions that I already knew the answers to and his replies were dismissive and inaccurate. I had taken part in a couple of research projects for his team and that taught me more about my asthma and once I had read up about the research that the Prof was interested in, I realised that, as a subject, I was not his phenotype. I was fortunate that one of his consultants was more interested in my treatment and happier to discuss things with me.

I do agree with Lysistrata on all points.

Do you always get to see your Prof, or is their a chance of seeing another consultant on the team?

[Lysistrata Administrator Community Ambassador in reply to Poobah]

Ahh sounds very much like mine, especially with the 'not my phenotype'. I just bitched about this to the lovely PA at a GP asthma review. My consultant does the whole 'I am the expert' thing. Well I may not be an expert but I can and have read the papers, many for work, and I know of plenty of other experts and some studies which contradict him (the horror! He doesn't acknowledge the possibility of being wrong 😅).

[Poobah in reply to Lysistrata]

🤭

[hoven]

I last spoke to another prof on the team in Feb where I raised the side effects, he had a look at a list and then said 'nobody else gets that'. had to be referred back to gp to investigate before he would be convinced it was the Benra. why don't they just believe you! I always do as much research as I can. anyway I am not undergoing scans etc cos I know it's the biologic.

[ccccc]

Had a similar thing when I was tried on Xolair - my asthma actually got worse and I kept feeling very hot as if I was having a reaction to it - rang the respiratory clinic "oh no it can't be the Xolair, no-one else has mentioned that...". Had to take extra Pred. Later at the end of the Xolair trial the symptoms went away!

[Hotchops]

Which hospital are under for your biologics .and what side effects are you getting. As I understand and have been told that there are none .this makes me so confused .who do you listen to .👍👍

[hoven in reply to Hotchops]

Hi Hotchops, don't know if my reply went through but in case not - I am under the Oxford respiratory team. side effects are mainly weakness and aching muscles. You just have to try one and if it doesn't work they will put you on another one. Look up as much information as you can find out so you are aware of all the possible problems.

[Lysistrata Administrator Community Ambassador in reply to hoven]

Ahaha I think I have a guess about who your prof is who denied side effects, though I won't say his name here as this is very open and anyone can read. If it's him, I've encountered him in a work context (research side, I'm not a medic) and this wouldn't surprise me.

[hoven in reply to Lysistrata]

Interesting!

[Poobah in reply to Lysistrata]

I think we all have the same Prof! 😁

[Lysistrata Administrator Community Ambassador in reply to Poobah]

I honestly wish we did! I would prefer that to thinking there are many of them!

But then I was convinced someone else had the same consultant as me as he sounded so similar and he was miles away. So there are more of them out there being influential....aghh.

[Kath65]

Dear Hoven

I’ve just read your post and I totally get it!! I was prescribed Omalizumab (Xolair), last October, 150mg injection every 4 weeks. I’ve just had injection number 8. I'm a little younger than you (71), however I can truly say I have never had such terrible joint and muscle pain as I experience since taking Xolair. I also have dreadful fatigue, to the point where I feel I have to “drag” myself around and could quite happily stay in bed but I discipline myself to get moving. I’ve told my specialist about this and his response is that it’s “unusual “ and I should persevere!!! I have a face to face appointment with said specialist in June and I think it will be time to plan a new course of action, the side effects for me are too debilitating.

Wishing you all the very best, please let us know how you get on 😊x

[hoven in reply to Kath65]

Hi Kath, 'it's unusual' seems to be a stock response! I can't tell you how much better I feel knowing that least one member of the medical profession (my locum GP) agreed with me!

Xolair is for allergic asthma isn't it,I don't know which other biologics would be available for that. Hope you manage to get a new course of action. I am resigned to having less energy now but resent not being able to do things like hoover the stairs and mow the lawn!.

All he best x

[hilary39]

I had a terrible reaction to Dupixent which is a great fit for a lot of asthmatics. I tolerate Xolair well but I see in my biologics groups on Facebook that a fair number of people get joint pain with it. We all seem to react so differently to biologics-

I am on the patient advisory council of a severe asthma group in Europe and one of our top priorities is not just getting more people access to biologics but researching them and their side effects more deeply.

It seems to me like there is important information to be gleaned from who reacts how to different biologics since they are all so new. For example, Dupixent blocks interleukin 4 and interleukin 13. Maybe there is something about my particular phenotype of asthma, blood type etc. that made that a bad fit for me and that contains important info about what kind of person it is a better fit for, if that makes sense.

It's nice when doctors acknowledge stuff like this instead of being frustrated with us. My pulmonologist refused to believe Dupixent caused my trouble breathing even though it's listed as a common side effect on their website and I've seen dozens of other people say the same thing between this group, the ones I'm in on Facebook, websites like drugs.com and so on. Sigh!

[hoven]

it's so good to have all this information, wish I'd had it at the outset. a new website too drugs.com . don't feel such an oddity knowing others have the same side effects.