Anyone on Mepiluzamab had awful side effects ?

[Sh66]

Hi all

I had my 2nd dose of Mepo 10days ago and have been really struggling with side effects. The first 3 days i felt dreadful in bed shivering, aching all over, awful back ache and neck ache and unbelievable exhaustion. I am still really struggling with fatigue and achy, heavy legs and arms and pains in my legs as well as knees and hips. Some neck and backache still.

My resp nurses tell me the side effects could improve after 4 - 6 doses.

Has anyone else experienced these kind of side effects and improved?

Yet to see any improvement with chest but finding side effects really tough this time.

Be good to hear from anyone who is also on mepo.

Thanks in advance

Sarah

[EmmaF91 Community Ambassador]

I was on it but it got stopped after my 3rd dose. For me it was great for my lungs but the rest of my body hated it. Constant nausea, 3 migraines a month each lasting 5-7 days, constant aches and pains (back neck legs shoulders knees ankles) with underlying fatigue (not great when I work a relatively physical job). I got switched to Benralizumab and other than being shattered the 24hrs post jab and some flare of my angiodema/urticaria during that time to I have been basically side effect free (other than 1 ?? Chest infection and a grumbling low back which tbh is probably just me 😅). Asthma hasn’t been as good compared to mepo but mepo was never challenged by hayfever so... 🤷‍♀️😂

My advice is to discuss with your team and explain how debilitating the side effects are, combined with little benefit currently shown and see what they suggest.

Good luck and I hope things calm down for you soon

[Sh66]

Thank you for your reply. I was trying to persevere but 10days on just feel rubbish with exhaustion and aching and pain.

If anything chest worse but could just be the weather and time of year .

I'll ring the resp nurses on Mon and see what they say.

Glad to hear that the benralizumab is helping with much less side effects. Is that still a mthly injection? Did you have to wait long from stopping mepo to being allowed to start the next?

Thanks

[EmmaF91 Community Ambassador in reply to Sh66]

Benra is monthly for the first 3 months then 2 monthly... I had to have a break long enough for my eosinophils to come up which was about six weeks (as my prev eosin showing BT was 13months prior by the time they agreed to the switch). But then I had to wait for it to come on the market as it’s a new drug and my specialist hospital didn’t have a prescribing rights for it, so I started it in May I think having had my last days of Mepo in December (I got early access to Benra). Many people who I know had similar issues on mepo have found both Benra and resulizumab better for asthma and/or side effect being less.

Good luck with the ANs and hope they can come up with an alternative for you 🤞🏻🤞🏻

[Sh66 in reply to EmmaF91]

That's great, thanks for your reply.

Take care

[Hotchops]

Hi o have been on mepolzuma for 15 months now and have had no side affect my asthma team said their are no side affect which hospital do you go to for it ? Xx

[Sh66]

Thanks for your reply. Glad you've had no side effects. I go to Leeds and still feel rubbish almost 2 wks on and my chest went off 1 and half hrs after having it. Considering stopping it.

[cconsta1]

I was on mepo for 6 months and I felt terrible. Just like a fluey feeling for a few days after each jab and then would get a cold or similar kind of thing at least once a month. Eventually my airway inflammation on the machine that measures it was well in the 100’s and going up each month despite being on the highest pred for my weight the whole time they decided it maybe wasn’t for me. It was disappointing because I really thought it would be the thing to help. But there’s loads of alternatives to try apparently so I would just keep talking to your consultant or whoever administers it to you about it. It was actually the asthma nurse who used to administer it to me who told my consultant she thought it was unfair to keep me on it as she saw me every 4 weeks with it. Good luck

[Sh66 in reply to cconsta1]

Thanks for your reply. Sorry to hear you suffered in the same way too. It was my resp nurse who said it wasn't fair to keep me struggling like this as side effects having big impact on life.

Have you started on any of the other ones?

[Shellc]

I had it fir 7 months , after 1 month developed aching legs abs exhausted was told no side affects in this injection , but has each month passed the pains got worse , I had two frozen shoulders to the point I couldn’t use one arm , eventually docs admitted it was the mep and I came off, within a month or so no joint pains and arms are brilliant, am on resilamab now , had 4 so far , have developed back pain, just hoping it’s not the res because breathing is better

[Sh66]

Thanks for your reply. Glad to hear resilizumab is helping chest.

I've still got a lot of aching especially in my legs and extreme tiredness which has impacted on my life so they decided it wasnt the right drug for me.

How long did you have to wait before you could start res?

Thanks