Ritazoram Trial

[freakyschizogirl]

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.

[vdub]

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!

[Geoff]

Hi Sam, Can you elaborate as to exactly what the trial entails? Hope it does the business for you!

[gilders]

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.

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?

[gilders]

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 (http://clinicaltrials.gov/ct2/show/NCT01697267)

[freakyschizogirl]

Thanks Gilders

Obviously I need to check my spelling before posting! That is indeed the trial I am on.

Very interesting reading.

[blu4runner]

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 (http://www.rarediseasesnetwork.org/vcrc/research/5525.htm)

[freakyschizogirl]

how many infusion have you had?

[blu4runner]

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

[freakyschizogirl]

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.

[MikeG-2012]

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.

Has your ENT done a culture of the bacteria in your nose and sinuses to see what antibiotic will work on it? My ENT does that every time, otherwise we'd be treating the infection with an antibiotic that does not work.

[freakyschizogirl]

Yes Mike, its been done but the sinusitis is resisting the charms of the anti biotics.

[MikeG-2012]

Yes Mike, its been done but the sinusitis is resisting the charms of the anti biotics.

I've had a couple of antibiotic rinses that did prove effective. One was gentmyacin, the other was bacrtoban ointment dissolved into a sterile saline. Might want to ask about that course of action. My staff infection mutates regularly and we have to alternate treatments. I think the staphylococcus aureus is a common problem with those of us who have sinus issues.