Immunosuppressant's with Rituximab

[Maudy1]

I am on my 2nd round of Rituximab and am having to consider another immunosuppressant along side it, as I still do not feel well and my symptoms get worse as I taper my steroids. Has anybody experienced similar problems and if so, which drug worked well. Any experiences very welcome.

[LynneJ Vasculitis UK Volunteer]

Hi

I am just back from my 2nd treatment of rituximab.

I am feeling better in myself but symptoms, numb feet and rash have yet to improve. My consultant said it could take up to 3 months but should be quicker with vasculitis. At least I feel ready to start building up my body strength again which is good as I really didn't feel like doing much at all last year.

I am also taking Azathioprine. I had been on it for 4 years with no problems at all and the I had this flare. They don't know it the aza was not working as well or an infection had triggered the flare.

I cannot take methotexate as I already have fibrosis of the lung and that drug can actually cause fibrosis. I tried mycophenalate both types but they caused stomach trouble. Again I had already had vasculitis trouble in my stomach. So it was back to the Aza. I understand it is the mildest of the maintenance drugs.

I will be taking it along side the Rituximab. I hadn't realised that Rituximab is the alternative to Cyclophosphamide.

As I understand it when we reduce steroids our bodies have to adjust and start making their own again so in my opinion it will take a while to adjust and that is why we reduce very slowly.

I hope that helps a bit. I hope the Rituximab works soon as I have heard it has been wonderful for a lot of people.

I should say that I have MPA which is small vessel vasculitis similar to GPA

Best wishes

Lynne

[Maudy1 in reply to LynneJ]

Thanks Lynne, that is very useful. Can I ask what dose of Azathioprine you take alongside Rituximab and what have managed to reduce your steroids to so far?

[LynneJ Vasculitis UK Volunteer in reply to Maudy1]

I take 150mg Aza split 75 after breakfast and 75 after evening meal. I am down to 7.5mg steroids but my consultant would like me to stay at that for the time being.

Not too bad as lot of people have to be on 5mg for ever. I have been on them this time since last March (varying doses).

Before this flare I had been steroid free (just the Aza) for about 3 and half years. It did take about six months to get to that point though. I have had to learn a lot of patience (not one of my favourite words!)

So it is possible to get off them eventually but best to take it slow.

[LynneJ Vasculitis UK Volunteer]

Forgot to say I think the amount of the maintenance drug depends on the weight of the patient. And also a lot of people take the Methotrexate and Mycophenalate with no problems at all.Trust me to be awkward.

It might be trial and error to find which suits you best. Everyone is different.

[Maudy1 in reply to LynneJ]

Yes, I will talk to my consultant about it. I was advised by Addenbrookes, Cambridge to come off Azathioprine as most people respond to Rituximab on its own apparently but it doesn't appear to allow me to reduce my pred enough. One last question - has your white blood count/infections been ok on both Az and Ritux? Thanks for your help xx

[LynneJ Vasculitis UK Volunteer]

Funnily enough I asked about that today. I was wondering how careful you had to be on Rituximab. She said they may be low for the first few days and then you would just have to be careful as normal. Avoid people with flu and chickenpox or anything else catching.

She said that is what they are looking for when you have the regular blood tests to make sure they don't go too low. When on Aza my doctors would always send a text when I had my bloods done and they were always Ok till the flare. My husband and I has a type of flu this year although quite mild as we had had our flu injections. But I was in the process of changing meds. There was a lot of it about this year. That was the first time I had been ill since my initial diagnosis in 2010 so not bad.

My chest consultant has always told me to get antibioics sooner rather than later as I have a weak chest, but I didn't need them this time. If I get chesty I do go to the GP to get checked out and they will prescribe them for me.

When I was considering Ritux my Rheumy nurse explained that we have three sets of b cells (I think it is the b ones the ritux works on)

They are:-

new ones - just growing and learning their trade,

mature ones-working currently

and old ones -on their way out

It is the mature ones that Ritux targets so we still have some immunity.

NIce little story. It made sense to me and put my mind at rest.

[LynneJ Vasculitis UK Volunteer]

The drugs all do different things. Put very simply how it was explained to me, Cyclo and Ritux kill off the cells that are attacking us. Steroids reduce inflammation and the Aza, Methotrex and MMF all keep the immune system at a reasonable level.

There are some good diagrams on the web now if you wish to go into detail.

[Maudy1 in reply to LynneJ]

Thanks so much Lynne, you have been really helpful. I will try Azathioprine again and hopefully that will do the trick.

[LynneJ Vasculitis UK Volunteer in reply to Maudy1]

Good luck. Let me know how you get on.