Retuximab or Mepoluzimab

[Carlmorfey]

Hi, diagnosed with asthma Nov 2000, correctly diagnosed with EGPA Nov 2017, should be getting Retuximab in a months time, had been told I was getting Mepoluzimab, so anyone know if there is much difference or is one better than the other. My condition has been uncontrolled for years and am now at the final effects of EGPA, have vasculits in big toe, I'm a man but really child birth has nothing on this pain, several sleepless nights., on pregabalin for the nerve pain, some damage to my nerves and my heart. So in the last 17 years 3 lots of polyps removed 2 from nose more 1 from ear, ear drums burst 5 times had grommetts fitted,catteracts in both eyes, steroids have thinned my skin, muscle wastage to calfs, bursitis to knee, had a polyp removed from colon, and finally secondary Reynards on right hand, got a bit of a limp because of my toe. And with all this hoping to get back to cycling, and would love to be able to start running again, do swim but toe aches like bigger afterwards.🤞

[Riff1954]

Hi Carlmorfey

You should check out the Vasculitis U.K. Website vasculitis.org.uk/ where you will find more info about EGPA. There is also a health unlocked group for Vasculitis sufferers.

My wife has egpa and has had a course of Rituximab. She is now on mepolizumab. They are similar drugs but we found that Rituximab didn't do a great deal for her but as she has only had two Mepolizumab injections it is too early to say if that will be of benefit.

The most important thing is to make sure you are under the care of a team with knowledge of Vasculitis. We travel from northern England to Addenbrookes in Cambridge as the team there are world reknown and have great experience of all types of Vasculitis including egpa.

[Matman]

Bad luck on the initial 17 Year misdiagnosis and sorry to hear you’ve had such bad luck with your health. If the view now is that you need Retuximab rather than Mepo, I’d imagine your Consultant knows what the score is and is trying the drug he / she feels is best for you. Don’t know why you’re facing a Months wait though, might be worth pushing for an earlier start.

[Carlmorfey in reply to Matman]

Initially was hoping to get mepo but because it is only licenced for asthma they have a monthly meeting to see you can have it because of the cost, and from first being told I might get it 6 months would have passed, but my EGPA have continued to evolve. The vasculits in my big toe was originally diagnosed as gout because of the pain and that started last June. My local doctor wasn't even sure what hospital department to send me too. So I think this is why it has taken so long.