Hi all
Just a long shot really but is anyone else on the Ritazoram trial in the UK or abroad?
Dr Jayne has put me on it due to my flare and just wondered how others are fairing and what they got randomised with.
Hi all
Just a long shot really but is anyone else on the Ritazoram trial in the UK or abroad?
Dr Jayne has put me on it due to my flare and just wondered how others are fairing and what they got randomised with.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
Haven't heard of anyone else being in the trial, but I sure hope it works out for you. Please keep us posted on the results, Sam.... Hope all is well and say hi to Stu!
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
Hi Sam, Can you elaborate as to exactly what the trial entails? Hope it does the business for you!
Never heard of it. A quick Google doesn't reveal anything either.
Looks like you're going to have to educate us all. It's always interesting to hear about new treatments. I just worry about unknown long term side effects.
Why have you been chosen? Have you not responded well to other treatments?
Diagnosed April 1995
I obviously misunderstood and thought it was a new drug.
I tried a different spelling and see the trial involves Rituximab and prednisolone.
Info on trial here - Rituximab Vasculitis Maintenance Study - Full Text View - ClinicalTrials.gov
Diagnosed April 1995
Thanks Gilders
Obviously I need to check my spelling before posting! That is indeed the trial I am on.
Very interesting reading.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
This is the actual study I am enrolled in -5525: RITAZAREM: An international, open label, randomized controlled trial comparing rituximab with azathioprine as maintenance therapy in relapsing ANCA-associated vasculitis
how many infusion have you had?
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
I had 4 infusions 1 week apart at the beginning and 3 at 4 month intervals. I will get my next infusion in a week on 11/15. It has worked great so far for me
I'm having my third infusion tomorrow.
When I had RTX 2 years ago I had them 2 a week apart and then 6 monthly for 2 years. 2 Years of remission followed and now I'm flaring and I've never felt more tired!
The original cycle of RTX didn't majorly affect me last time but this time it knocks me for six. I spend the whole infusion in a dopey state and feel awfully tired for days after its a fight to get out of bed. I've also had sinusitis for 6 months now and on my 6th course of antibiotics which isn't helping matters as i'm having vertigo like symptoms and sinus pain so bad I can barely concentrate some times.
Exhausting.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
Bookmarks