Dupilumab and e-Asthma

[corinneyvonne]

Hello fellow asthmatics

Well another chapter in my life begins again. I started Dupilumab (Dupixent) yesterday after a year long struggle. I was on Mepolizumab but last October it stopped working. It had worked really well for 4 years but suddenly didn’t. No one can tell me why and the most frustrating thing is that no one believed me when I told them. I have spent countless hours on the telephone and sending e-mails. It is has taken me back again to the brink of madness and being totally housebound as cannot walk anywhere without gasping for breath, in order for the ‘professionals’ to do something about it. Yesterday I had the max dose and am feeling pretty grotty today but am forever optimistic. So lovely people, keep going and if you are not being heard, scream louder 😁. Love and light 🙏

[Pipsqueak77]

Hi corinneyvonne

I have posted a reply to you in another thread! Sorry - I didn’t see this one!

However I am in a similar position to you in that the Benra that I have taken for 2years seems to have suddenly stopped working..🤷‍♂️

My cons is great and has immediately offered a switch to Dupilumab but I’m afraid that it’s me… I am so worried about switching. I am afraid of side effects and also of moving from 8weekly to 2 weekly injections. I know it sounds crazy but I already struggle to get my head around all the meds I use and find it so frustrating… the thought of more regular injections just fills me with horror. 😫

Apologies for feeling sorry for myself… but it is great to hear from others on Dupilumab ( albeit just recently). Do you intend to inject yourself longer term? What are your thoughts on 2weekly injections?

I hope you feel much better soon and that Dupilumab is your wonder drug!🤞🤞

Thanks for reading…👍😊

[corinneyvonne in reply to Pipsqueak77]

Hey thanks for replying. Feeling sorry for yourself is totally normal. Being like this is horrible. I have had moments when I have just sat and wept. Switching for me was an easy decision as have no quality of life however I can understand not wanting to. I will inject myself but have another two visits to hospital before I can start to do this.

I hope Dupilumab works effectively too as the alternative is not worth thinking about. Luckily I am an optimist 😁.

Take care of yourself and let me know how you get on. Love and light 🤗

[Pipsqueak77 in reply to corinneyvonne]

Hi

Thanks!

Hope you are feeling a bit better today?

Yes.. I have a few months to make up my mind before another clinic but 🤷‍♂️I guess I need to have a think.

It’s great hearing from others who experience the same problems - tho I’m sorry you have them. I’m sorry too that I don’t have many answers for you just 🤞it works because as you say the alternative is rubbish.

Thanks again 👍😊

[hoven in reply to corinneyvonne]

knowhow you feel. I was on Mepo for a while and had to stop it cos of muscle weakness. they didn't b elieve me! just started Benra but have the same problem. my legs are aching so much, almost unbearable. don't think my body likes the modern pharmaceuticals!. so fed up. breathing no better either.

[corinneyvonne in reply to hoven]

It is exasperating when you are not listened to. I told my consultant last October that the Mepo was not working as effectively but just told that I have a cold and to up my steroids. As if steroids are the answer....... Both Benra and Mepo affect the same antibodies - IL-5 (subtle differences of course) so it does not surprise me that you have the same side effects. I would speak to your team about Dupilumab as it behaves very differently. I have only just started taking it so cannot confirm its efficacy but having a conversation may prove useful. Side effects are very common for most drugs unfortunately. I have had a headache for 5 years. Luckily Ibuprofen works for me even though I shouldn't be able to take it. Everyone is so different. Good luck 😀

[hoven in reply to corinneyvonne]

thankyou for that. I will keep Dupilamab in mind if all else fails.

[eleanordigby]

Too true, about the screaming! Exhausting though isn’t it. If u had a good response to mepo you’d think it was obvious they should try a newer one. All about money, I suppose. I hope you get to breathe easily on Dupixent, and soon!

[corinneyvonne in reply to eleanordigby]

Thank you very much for your reply. I still feel quite poorly today but when they give you double the dose in one go then I suppose that is normal 🤦.

Have a good day 😁

[Pipsqueak77 in reply to corinneyvonne]

😊🤞

[Mickeyboy2020]

hi, I am in similar position but further down the line , same as yourself mepo stopped working after about 18 months, they put me on another one and I had a reaction then last one was a infusion once a month .

Now they tell me there isn’t another that would suit me as yet but maybe next year.

All they tell me is to keep taking pred and they have put me on doxycycline antibiotic permanently .

I suffer from severe asthma but fortunately I’m still able to get out and about and still do a bit . Fortunately I can still play golf and badminton once a week

At the end of the day you’ve just got to get your head down and do the best you can

I hope the new drug works for you 👍🏻

[corinneyvonne in reply to Mickeyboy2020]

Hi thank you for sharing your experience. Good to hear that you are still somewhat mobile 😁. This is my concern as there is simply nothing else for me if Dupil doesn't work. I am virtually housebound as cannot walk for more than a few steps without gasping. Luckily I have managed to keep working as have worked from home for years so noone has questioned it so far. Always the optimist so waiting for the 2-week mark to see if it is working. Hope they manage to find you a new drug next year 🤞

[Mickeyboy2020 in reply to corinneyvonne]

keep safe & well👍🏻👍🏻

[Whizzymaz]

Really hoping this medication works for you, being breathless is just awful. I am going to the severe asthma clinic next month to discuss, hopefully, going on these biologic medications. Hope you feel better soon.

[hoven]

does anyone know the reasoning for the three monthly then on to eight weeks for the Benra jab?

[Pipsqueak77 in reply to hoven]

Hi

Do you mean 3 x 4 weekly and then onto 1 x 8 weekly?

Anyhow my understanding is that this is to provide a ‘ loading dose’ to get the drug into your system and working quickly. then to settle back to the normal long term dosing regime long term.

They do it with all biologics.. but just different time frames depending on the drug and it’s prescribed dose and frequency.

Sorry if that’s a bit confusing.. not sure I explained it that well!

😊👍

[hoven in reply to Pipsqueak77]

thankyou. perfectly explained! as suffering with muscle aches, was thinking of missing the third monthly dose and give my system a chance to settle but perhaps had better not. a third dose will really ramp up the problem as it gets worse with each dose.

[Pipsqueak77 in reply to hoven]

Hi

Yes… I am no expert but I don’t think that is a good idea.

Maybe have a chat with your hosp team and see if they can recommend something else to try?

Good Luck!

😊👍

[hilary39]

I'm about to start on this as my new pulm thinks the Xolair isn't working as well as it should be. I'm curious to see if it'll improve things.

Oy! We're all in this together! It's always nice to talk to other people who are juggling meds and trying to see what works.

[corinneyvonne in reply to hilary39]

Good luck with your journey 😀. Yes supporting each other is very important as it can be extremely lonely having this condition. I have been stuck at home again lately and this is also mentally challenging. Keep me posted as will be interesting to see how you respond to new meds. Good luck.

[Davenpos]

Hi ...I am waiting be approved for duplo but still requiring 40mg of prednisolone while on mepo...totally fed up of it all now as physically I deteriorating and always been so active until the nightmare began5 years ago ending up on ecmo.. lete know how you get on with this x

[corinneyvonne in reply to Davenpos]

Hi I am sorry to hear that you are still on pred whilst on Mepo. i totally know where you are at as only started this crazy journey 6 years ago. I went from being really active and having a senior role travelling all over world to being virtually housebound. It has been a huge adjustment and sometimes wasn’t sure if I wanted to go on. Anyway we all know what I am talking about…..

Well I am 9 days on from starting Dupil and I managed to make it up two flights of stairs this morning without stopping or feeling like I was going to die 🙏 So it looks like it is starting to work. I have expected side effects - headache, little nausea, blurred vision, itching but my body will still be acclimatising. Second dose coming up on Monday so onwards and upwards. I have booked on a Yoga retreat in December so something to look forward to. Good luck and keep me posted too 😁

[mylungshateme]

Just come across your thread I'm sorry your on this journey too but also glad in a selfish way. I was put on mepo but reacted then put on benra still reacted but basically both same family so no surprise. Still on pred so need to get down to 5mg to get funding for another bio. And another I'll be eligible for next year. But in the mean time pants quality of life an back to cons not understanding the impact it has on us. 😔X

[corinneyvonne in reply to mylungshateme]

Hi thanks for your response. It's good to be selfish at times because at least you know that you are not the only one. I had my second appointment (3rd dose) this morning and feel relatively well. I turned a corner last Thursday as made it up four flights of stairs (only 6 steps on each though) without wanting to die 😂. Apart from the usual side effects headache, itchiness, nausea, I am starting to improve. Yes, a lot of the other umabs target the same receptor so not surprising same thing happened 🤦‍♀️. I am surprised they haven't mentioned Dupil to you as it targets different receptors. I really do not believe that anyone can understand what it is like not to be able to walk and breathe at the same time however I would not wish this on my worst enemy 😆. Good luck with your new bio. It will soon be 2023..... 🙏