new medication
Looking for info on MH patients that are using Ultomaris...I understand this is a new medication for MG and looks very promising....thoughts? side effects?
Mu husband has occular MG which progessed to general
Ps thank you for being so helpful!
Yes I saw that thank you but the problem is it’s so new . So far I’m doing pretty good able to walk - talk - and eat it was pretty scarey that you can’t even dress or wash yourself for 3 wks thank God for family I was completely paralyzed. But steroids and mestion finally helping. Been on for for 3 months but if it happens again I have no choice to try it depending on the Ins.
Thank you, Beth. He is currently on6 pills a day of celcept.and also Mestonon periodically. He was diagnosed in 20 15 and had been on cellcept all this time. He was doing great so his doctor tried to wean him off gradually got down to one pill a day and then it came back with a vengeance. So he has had double vision now for over 5 months and they're trying to get it cleared up again.. and much more generalized weakness also.
Oh goodness, that must be so scary and frustrating after having it under control for many years. Sending lots of hugs your way! Best, Kaitlyn (Team Member)
Hi
, That's right - this was FDA approved in April for people with generalized MG who are anti-acetylcholine receptor (AChR) antibody-positive. I know there is a lot of interest in this, but I have not seen people sharing a personal experiences with this yet. I hope we begin to see more soon and community members will chime in here with their experience. How is your husband feeling? Is he currently taking any medication?
Best, Lauren (Myasthenia-Gravis.com Team)
please let us know with new transfusion, shouldn’t the company have some info on this! This is the company's website if you'd like to check it out! https://ultomirisgmg.com/ Best, Lauren (Myasthenia-Gravis.com Team)
