Wegener's granulomatous (vasculitis.)

[shennie]

I was diagnosed with wegener's back in 2008. My first treatment was primarily cyclophosphamide . Sadly I had a bad reaction to it in that it seemed to stop my body producing blood. I nearly died and had to have emergency transfusion. They switched my medication to no avail to prednisolone and azathioprine. I was on that for 5 to 6 years. In June 2014 they gave a new treatment Called Rituximab.I had only 1 dose of this dripped into my arm. It seemed to destroy my immune system which came back eventually. BUT the vasculitis was gone and still is today. So, my question is why dont give it much sooner, say after 2 or maybe 3 years. Maybe it would have saved my kidneys for a few more years.

[Nadine99]

The specialist's don't know what works for each person. My husband was tried on Cyclo, Meth, Aza & Mycophenolate before Rituximab. It's only been the Rituximab that has had any significant effect on his Wegener's/GPA but it seems to be a trial and error thing. He was on high doses of steroids in the beginning so he now has Avascular Necrosis in hips & shoulders. 2 new hips down, 2 new shoulders to go. Just goes with the territory I'm afraid.

Best wishes to you

[Chris-Bromsgrove]

Hi Shennie

Rituximab is a relatively new drug for treatment of Vasculitis. I don't think it was available in 2008 and it was only approved by NICE for the treatment of ANCA associated Vasculitis in about 2013 I think. I am pleased to hear it put your Vasculitis into remission. Long may it continue.

Chris

[Hidden in reply to Chris-Bromsgrove]

It's actually been around for about 30 years and got FDA approval in 1997 but you're quite right that it received NICE guidance for GPA and MPA just a few years ago. It was my saviour in 2007 and has maintained my remission ever since

[Chris-Bromsgrove in reply to Hidden]

Wow, I didn't realise it had been around that long and interesting that you managed to get it in 2007. I suppose it is all about being under a good doctor who will push for it.

[deebeau in reply to Hidden]

How long have you had Vasculitis? I was diagnosed with anca Vasculitis in 2013 and Rhumatoid arthritis. I was given Cyolophosmide first then Rituximab infusion, because the Cyolophosmide didn't agree with my body. They stopped them and gave me two infusions of Rituximab. That was back in August of this year. I am experiencing bouts of nervousness, shaking, kind of trembling feelings. I was wondering if you have had anything like that after your treatments? The Rhumatoligist said my Vasculitis was in remission but I am still on 20 mg of prednisone a day and also a pain pill. He wants to give me another Rituximab infusion in January. Is this normal for them to do? I would appreciate your reply.

Deebeau

[Hidden in reply to deebeau]

I was diagnosed in 2007. It took 7 months of chemo, massive doses of steroids (oral and IV), azathioprine etc etc. 6 months later 6 doses of Rituximab finally brought it under control, followed by a dose every six months for two years and then annually as maintenance.

Rituximab takes up to three months to be effective and it depends what doses you were given. A typical full dose is 1 g (strangely it's based on body surface area) so it's worth asking what you've had. Another dose is normal as above.

How is your consultant assessing your remission? Blood tests are unreliable and so I think two months is too soon to say, especially as you're still not feeling well.

The shaking/trembling could be the steroids but if this has just begun it could be an infection(?) Has your prednisolone been reduced since your Rituximab? The symptoms are more likely if steroid taper is too fast.

Side effects from Rituximab are usually fairly immediate as some people have breathing difficulties during the infusion but it's rare.

Where are you being treated?

[deebeau in reply to Hidden]

I'm being treated in the United States of America a town called Paintsville, Kentucky by a Rhumatoligist.

[deebeau in reply to deebeau]

Yes my prednisone has been reduced since my last Rituximab treatment. They're assessing my remission by my blood tests. Thanks for you information. I just want to feel better like right now. I'm tired of feeling weak and bad all the time. Guess I just have to be patient. God Bless You and thanks again.

[mejiagabriela in reply to deebeau]

I hear you!!1

[shennie in reply to deebeau]

Hi Deebeau, sorry to hear you have such bad symptoms from rituximab. Like all drug therapy side effects can differ widely from one person to the next. It actually almost shuts down your immune system to get rid of the genetic memories that cause your own antibodies to attack the linings of your small red blood cells. I gained 4 separate infections within a month of rituximab. I very nearly died and was rushed in by ambulance. After two weeks of intensive antibiotic treatment I recovered fully AND no vasculitis !! So the point I am making is have regular blood screen, be extra vigilant regarding hygiene, for instance when shopping in supermarkets, never buy unwrapped food, only buy food that wrapped and sealed. finger pokers, testing bread for example can pass on germs that you normally have had a natural immunity to.

good luck

[deebeau in reply to shennie]

Thank you for your information on the grocery shopping and what to buy. I never thought about that.

[mejiagabriela in reply to Hidden]

you give me so much hope that Robert will be fine after the Rituximab treatment the doctor recommended..it will probably start in couple of weeks..my only concern was/is that they will give him one infusion every week for four weeks..is that to much??? He is currently on a second round of clyco but is not working this time, it work on the first round a year ago, but lack of experience from the doctor since Robert did not had a maintenance treatment, so GPA came back.

[Hidden]

The usual protocol is two doses, one month apart, then a dose every six months for two years. It takes a few months for Rituximab to be effective so it's normal to continue with other immunosuppressive drugs (typically prednisolone and possibly more) until remission is achieved. Regular blood and urine monitoring is essential although not a reliable indicator of active disease. Rituximab depletes IgG (immunoglobulin) for up to 12 months so it's not unusual for this to remain under range. I hope this reassures you and that Robert receives his infusion soon.