Rituxan anyone ?

[im so blessed]

I have been taking imuran and methotrexate for the past 7 years for my WG. dxed 13 years ago. took only imuran after my initial cytoxen treatments. now my doc is recommending rituxan and i just wonder your thoughts? it sounds kinda scary. i have WG with kidney involvement at first. now its mostly arthritic and sinus. i did have a stenosis 2 years ago. just not feeling like i ever really get my head above water...lots of flares. wondering if its time for a switch. i still have so much to be thankful for and i do not want to complain. i guess we all understand each other.

[Dirty Don]

Welcome Blessed, glad you're on here. Yes, those of us who survive have much to be thankful for no matter how we feel. I'm kind of surprised your docs finally recommended rtx since you've had WG for at least 13 years. RTX is the 'last' step in WG treatment at this time. It's very good and effective and is usually employed if flares/symptoms won't go away with the use of other drugs such as mtx, immuran, etc. Sounds like the switch is overdue. Best to you!

[MaxD]

I'm not sure what Don means by "last step." Rituxan was the first treatment recommended for me. It is relatively new (has been used only for about a dozen years, primarily for leukemia, and the only approved drug for GPA since 2012). It's a biologic drug that targets B cells, and has few (if any) side effects in almost all cases. The rituxan web page will give all the dire warnings and possible side effects but these are extremely rare. I personally did not notice any side effects, and it has brought my PR3 levels down from 150 to 20 within 6 months. It is not as fast acting as cytoxan which is toxic and attacks all cells indiscriminately but works quickly with several side effects, some severe.

If you're worried about taking Rituxan, don't! It will work gradually so do not expect noticeable symptoms by the day, but rather by the month. By the way, Rituxan compares well against all other treatments esp. for sinus problems. My doc tells me there is a paper out on that, and I will ask him for it next time.

Good luck to you!

[im so blessed]

Thankyou both ! So maybe i just need to change my mindset. i mean, i did the cytoxen for 6 months 13 years ago..it cant be worse than that. Difference being that was to save my life and as a 16 year old didnt have to decide. Now i wonder if i need to leave well enough alone. But then some days....o well, doesnt have to be decided today! thank you tho !!!

[Bek Stone]

It was only TGA approved in aus for WG last yr b4 that it was really hard to get and still not that easy and you shouldn't worry blessed I didn't respond to any of the other treatment and I have with rtx it hasn't made me sick or anything just alittle off balance, groggy and a bit vague and alittle hot but nothing like the other treatments im very close to remission now and I have the rtx to thank for it I think that its long over due and will make you feel alot better but also itll b a gradual change as max said hope it all goes well for you :-)

[blu4runner]

I have been on Ritux since last August. I did 4 initial weekly infusions and now I get an infusion every 3-4 months and it has been working great with my symptoms. I still take 5mg of prednisone daily as well

[mrtmeo]

I have been on Ritux since last August. I did 4 initial weekly infusions and now I get an infusion every 3-4 months and it has been working great with my symptoms. I still take 5mg of prednisone daily as well

Hi Blu,
When you get an infusion every 3-4 months, do u have to up your prednisone dose for the treatment?

[blu4runner]

No I continue on the 5 mg of prednisone I am in a clinical trial testing who stays in remission better those that take Imuran pills daily or those of us that get ritux every 4 months. Dr Peter Merkel,my Dr, is 1 of the lead doctors in this research

[pwc51]

I am just on my third set of RTX infusion pairs - 3rd flare since diagnosis in July 2009. In between it works like a dream
!

[freakyschizogirl]

blu4runner are you on the Ritazoram trial?

[Anni63]

Hi I'm Anni from Scotland I finished a course of rituximab (2yrs infusion every 6 months) after I developed Tracheal Stenosis done absolutely nothing for me it's easy to take so nothing to worry about no Nausea or vomiting nothing like Cyclophosphomide anyway I'm going down to Cambridge in England to have a Resection of my Trachea I hope your rituxan works for you keep me informed tnx

[blu4runner]

Yes the study is titled- An International Open label randomized controlled trial comparing rituximab with azathioprine as maintenance therapy in relapsing ANCA associated vasculitis. My dr Peter Merkel is the principal investigator for this study