tocilizumab for gpa?

[roobub]

hi all, my wife was diagnosed with gpa almost five years ago which seems to be rumbling on and has been refused funding for rituximab but has been told she can have tocilizumab. have any of you had treatment with this drug for small and medium vessel vasculitis and with what results as most of the info i can see is about large vessel vasculitis treatment with it. thanks roobub

[Shels]

I have been reading a lot about Ritauxan. Is that the same as Rituximab? I read where it is getting better results then the cytoxin drug and less side effects and not so harsh. Was telling my friend to ask about it but she is to worried it will piss them off to ask to many questions. I do know with doctors one has to tread lightly and not ask stupid questions but still I would like to know if any one has had it and what was the results thank you

[DevonLottie in reply to Shels]

Rituximab is the uk term for rituxan. You'll see many postings on here about the drug which has been extremely effective in the treatment of gpa (I don't know about the other forms of vasculitis but maybe someone can fill you in on that). At the moment my gpa is being controlled with just six monthly top ups of rituximab and enabled me to come off both prednisolone and methotrexate. There's loads of info on the vasculitis uk website which might help.

[Crubio81 in reply to DevonLottie]

Had any side effects with Rituximab?

[Shels in reply to Shels]

Thank you so much for your reply. My friend is on the cytoxin now and they said she will be put on Ritauxan in August. I told her that Ritauxan is known to be very helpful. They where not very positive on the out come of her kidney however, I am still very interested in any stories where people where able to get off the kidney machine with GPA kidney involvement. Thank you all

[Hidden]

Hi Roobub,

Whereabouts are you? It does seem a bizarre decision to fund Tocilizumab but not Rituximab for GPA. I would ask them for the specific clinical rationale.

[roobub in reply to Hidden]

we are in Kent . i have read the nice guidance regarding funding for rituximab and it would appear she does not qualify because she has not had cyclophosphamide.

the main point of the question is does anyone else have tocilizumab for wegener's as i can't find much info about its use in small vessel vasculitis and was wondering what results to expect.

thanks, roobub

[Hidden in reply to roobub]

Hi Roobub,

This is the most up to date article I could find into treatment of GPA which quotes all the trials.

spiral.imperial.ac.uk/bitst...

There is nothing in it which indicates that Tocilizumab has been trialed for GPA therefore it seems very strange to offer it! Is there any reason why your wife wasn't offered cyclophosamide 5 yrs ago as most cases of GPA require this to go into remission and the BSR guidelines for ANCA associated Vasculitis tend to support that. Could your wife qualify for Rituximab on fertility grounds?

You are welcome to phone or e mail me on the VUK helpline to discuss this further. If it were me I would be asking for evidence from trials and the clinical rationale to support the use of Tocilizumab.

[roobub in reply to Hidden]

hi Keyes

thanks for you reply

i think cyclo wasn't instigated as it was said to be limited gpa which was then deemed not to require such a severe treatment. unfortunately she wouldn't qualify on fertility grounds either and like you i am wondering why the consultant has said to take this drug

roobub

[Hidden in reply to roobub]

Hi Roobub,

Will do some more research and see what I can find. Biologics are wonderful drugs but I am sure you are aware they come with risks, it would be a pity to run the risks without any good evidence of benefit!

[Crubio81 in reply to roobub]

I'm in tocilizumab for 8 months now and it helped with my MPA, but not enough and it increases cholesterol, and I cholesterol issues.

I think if the GPA is light it should improve a lot, mainly because GPA is different than MPA, GPA create granulomas and the lymphocytes gather there in part by IL-6 mediation.

Think could work very nice.

[roobub]

thankyou keyes

to me it seems rather telling by the lack of responses from people who are taking this drug for gpa

roobub

[Suzym2u Moderator Vasculitis UK]

I think this needs serious discussion with your wife's doctors. Personally, my husband, John is not really impressed with the concept of "limited GPA".

John asks "Why are your wife's doctors not considering cyclophosphamide now??" Despite its known side effects it is extremely effective and rapid in bringing GPA under control.

[roobub in reply to Suzym2u]

sorry for the delay in replying. i don't know why they aren't using cyclo all i know is one visit they seem to say her symptoms are not gpa related and another they say they could be so perhaps crubio81 s theory may well be correct

thanks for all your replies

[Chappell8]

Hi. My local Dr favoured Cyclophosphamide to treat my GPA diagnosed in 2015. I was reluctant & after searchinh the Internet i asked to be referred to London Royal Free hospital. I saw Professor Salama within 5 weeks. He was fabulous, spent 50 minutes discussing treatment options & booked me in for Retuximab at Royal Free one week later. There were no problems with funding. As an NHS patient you have the right to shop around and ask to be referred to another specialist, you don't have to stay local or accept what your current Dr says if you feel unhappy with that. Retuximab bought my GPA under control within 3 months. 12 months later I've just had 2 more top up infusion's. I'm symptom free, have had no side effects whatsoever, and I feel Royal Free and Retuximab have given me back my health and quality of life. I'm so glad I sought a second opinion and would encourage you to seek Retuximab elsewhere, even if you have to travel to a further away hospital, its worth it to get the best possible treatment.

[hellojulie]

I am now in remission for Wegener's/GPA after four rituximab infusions ending October 4, 2017. However, I still have vasculitis in my feet and right hand. I can now walk without a walker, though I tire easily, and still take Cellcept, 10 mg of prednisone, and 2-3 10mg's of oxycodone per day. I have "drop foot" in my right foot, wear an orthotic, can't drive! I am grateful for the rituximab and for the information all of you have given. My question is: for the rituximab "top-up" is it every six months from the start or from the ending of the last treatment? Thanks to all of you!