MEPOLIZUMAB x 300mg HI DOSE ANYONE IN USA

[Sparkimoore]

Hi!

I’m in Jersey, uk. I’ve been on MEPOLIZUMAB injections for 23 months now for severe difficult asthma/EPGA/Churg Strauss Syndrome with limited effect.

I’m deteriorating considerably now & Consultant must act.

NICE has not licensed MEPOLIZUMAB in uk for this higher triple dose but as Jersey is not in NHS, & local Consultant has recently seen report in British Medical Journal about using this dose to gain control of EPGA they are FINALLY agreeing I have, im for this triple dose monthly from Wednesday. I’ve been warned inm at high risk of pretty dangerous side effects.

Has anyone taken this triple dose & how are they??

Someone please reassure me!

[Sarahjh2004]

I take 300gm of omalizumab every month. The usual legal dosage is 150mg.

I'm not sure if this is the sane. I know I had to get special permission.

Hope this helps.

[Sparkimoore in reply to Sarahjh2004]

Hi Sarah! I meant Mepolizumab, not omalizumab.. it’s the next generation & a lot stronger. Yours is Xolair isn’t it? Mine is Nucala.

They’re not the same but work in a roughly similar way. I know I have to go with this very high dose or be looking into the abyss again. Frightening all round. Hope yours is helping & thanks for replying!

Rose

[Mitz in reply to Sarahjh2004]

I know quite a few EPGA patients in USA on EPGA dose of Mepo. All are OK and dling well, little or no side effects. One of my friends was so bad She spent almost 3 years in a nursing home. Eithin 6 months of mepo she is in an assisted flat of her own. Almost on remission now. She was really bad. Only thing people mentioned is exhaustion after jab or headache 3 days. I am on Asthma dose on England since August. I have really bad breathing troubles. Prior to Mepo I was in Nebulizers each day and used at least 2 reliever puffers and I still could not breathe and talk. After 1st injection 9 noticed the difference. Now I can talk without losing my breath, I do not choke when eating or drinking. To keep this med I had to cut down on my steriods. I have cut down 400% but my EPGA is bad. I too need 3 times the dose but not allowed in England by NICE yet. I have never heard of bad things with Mepo and i have been following the trials etc for years. I do hope it works for you.

I too have exhausted all the meds. Steriods are keeping alive this past year. I have iv steriods every 28 days for past 4 years and now am told that I am morbidly obese despite a low carb vegam diet. The steriods are killing as well as keeping me alive. Please note there are 2 more similar meds to Mepo and another one has just been approved by NICE for Rid Asthma. My Consultant told me it is much stronger. That one is an injection too but every 2 months. So there is hope and new drugs. I hope you get the drug and have no side effects.

[lisat96]

I've been on 300mg of mepolizumab for the last 12 months for EGPA. I'm not sure what dangerous side effects they are talking about. I've had low grade headaches and fatigue, but I don't know if it's from the methotrexate, the mepolizumab or the EGPA itself.

[Sparkimoore in reply to lisat96]

I have terrible fatigue with the 100mg dose so goodness knows how bad it will get. When I first started in this lower dose I slept for almost a week straight! I can cope with that tho. It’s the unknown.. I’ve been warned migraines could be really bad & ive been lucky enough not to get them.. yet, but I’ve neen told there’s much higher risk of Anafalaxis & bronchi spasms too. I have total & sudden stop breathing episodes & they think it’s part of super sensitive larynx caused by the severe asthma so I’m terrified of these potentially getting worse too..

Damned if you do, damned if you don’t eh?

I’m reassured to hear that you don’t get horrendous side effects. Fingers crossed me too. Fear of the unknown as they don’t know much about these new drugs let alone st such high doses.

Thanks for replying!

Bestest wishes

Rose

[Hidden]

Have they tried Rituximab? It works well if I get it about every six months to prevent relapses.