Exafield

[Shellc]

Anybody know anything about a medical research company called Exafield , been asked to give my opinion on Mepolizumab

[EmmaF91 Community Ambassador]

Erm... all I know is that they’re a healthcare market research company and they will pay people to fill out online questionnaires but only for relevant conditions (I almost signed up as a student when I didn’t have money, but it needed an official diagnosis which I didn’t have at the time 😅)

They seem legit, but how did they get in contact with you? If via you hosp defo legit, if not then 😕🤷‍♀️

[Shellc]

I signed up for medical market research at some point but don’t remember when lol

[Sparkimoore]

Don’t know about them but how long have you been on Mep? How have you found it?? I’m having my 20th monthly injection on Wed. BIG disappointment. I’m already needing to up steroid dose as it’s not as effective as hoped. Staring into the abyss again..

[Shellc in reply to Sparkimoore]

I only had 7 injections and it’s been stopped , extreme fatigue , myalgia pain in both arms to the extent I’m kept awake at night , rheumatologist said it tendinitis in both arms , I beg to differ as started after 2nd injection. Consultant says not injection but now telling me it can cause the pains . I was on Xolair last year , had 6 injections , had side affects on that too. They say I may be able to have Reslizumab as it’s intravenous but to be honest I don’t think I want anymore . I’m going to give myself 6 months and see how I get on. I have to say my breathing not been too bad through the pollen season abs had no infections( I put that down to vitamins I been taking )but none of my tests results show an improvement

[Sparkimoore]

Hi ShellC!

I did you a LONG reply then the phone went in the middle & ive lost the lot! Will re write later but PLEASE DO NOT STOP YOUR MEDS! Only us 5% with the MOST SEVERE Asthma are even offered these top very expensive drugs. I’d hate to hear that you were unprotected & had a fatal Asthma attack. I assume you have your own nebulizer?? I always have mine fired up & ready to go. PLEASE DONT TAKE CHANCES!!

ROSE

[Shellc in reply to Sparkimoore]

I’m going to not have the jabs anymore , I have a lung condition too and on oxygen 24/7, on bi pap too but would never take chances , I have all the equipment possible lol , my only gripe with these injections is that they have not been around that long to know long term side effects. That worries me too , the trials were not done for very long either , there’s not people I know that they have worked for. Believe me I would carry on but I’ve lost faith . I was getting very good treatment for my allergies st a private clinic the nhs sent me to. 5 years done the line they took funding away . In the last 2 years since they stoppped it I have in hospital more times than I can remember plus these jobs cost more. It doesn’t make sense . Because it’s alternative therapy in their eyes I can’t have because it’s not provided on nhs. I can’t afford as I would pay for it myself x

[Sparkimoore]

I certainly have the utter exhaustion with the MEPOLIZUMAB, & that’s no joke on top of everything else. I have severe back,

neck & shoulder pain that is associated with Churg Strauss Syndrome, which is the cause of the severe asthma. I can’t say I’ve noticed the pain be worse. ( I’m on Morphine) No Dr can deny something starting within weeks of big new drug is not caused by it & like you say, they don’t really know the side effects yet. Please give the Reslizumab a try. You’ve got nothing to lose! Very best of luck!!