Hi I have WG for about 18 years and have nev... - Vasculitis UK
Hi I have WG for about 18 years and have never been told about Rituximab Have read other people talking about, how can I get it.
vasculitis.org.uk/news/nice... read this page on the website and then maybe talk to your consultant who treats you for your WG (GPA) Julie
Julie's link will provide you with the latest NICE guidelines for the drug but you'll see Rituximab hasn't been approved as a maintenance drug for patients not receiving it prior to 24 January 2014. However, depending on the status of your GPA/WG, your consultant may be able to prescribe it although the fact you've never been told about it may suggest he/she isn't as aware as you might like? The main issue for most hospitals is usually one of cost as it's currently around £1750 per 1g dose (which is a typical annual maintenance unit) but with comparatively few side effects and almost no toxicity, it clearly has huge patient benefits over most of the alternatives. That said, a small percentage of patients have reacted adversely and alternative treatments have had to be utilised. If you care to share more details about your current situation (privately if you'd prefer) I'll be happy to help with further information and my experience of the drug if at all possible. Healthy wishes.
Thank you for getting back to me on this.
I am one that puts their head in the sand.
But I am now getting discomfort in my legs feet and am feeling more tired. I am on the usual meds have reg bloods done and see the consultant every 4 - 6 months. I did mention it to them on my last visit and asked about the new drug, they did say it was for those who have just been diagnosed. I just wondered if it would give me some energy .
I have got kidney lung ear and sinus involvement and have been stable for quite a while.
So have you been having this treatment since you have been diagnosed or have you been given it recently?
I have ENT and bronchial damage from GPA/WG and was given Rituximab to bring the disease under control after traditional chemotherapy failed to do so despite 7 months of treatment. The current Rituximab regime is to be given 5 doses over two years (i.e. one every 6 months). It actually took almost 18 months from the initial symptoms to reach 'chemical' remission and then a further 2 years to become virtually drug free. I now get one dose every 12 months as a maintenance drug and it appears to keep the disease at bay.
As you can see from the NICE guidelines that Julie posted above, you've been misinformed that it is available for those just diagnosed and I'm afraid it's unlikely to help with your pain or give you energy as it's function is to simply suppress a specific part of the immune system. However, it could be a preferential maintenance treatment depending on your current regime. I hope this is helpful.
Healthy wishes.
Thank you for getting back to me
I am on 5 pred and 10 azathioprine with other bits and bobs,I have never been told I'm in remission
My nose is always crusted my ears are getting worse with deafness and noise. Feet and leg hurts. Fed up with normal pain reliefs.
Thought this might give me some up lift.
