How compromised is the immune system ? Rituximab, Abatacept

[Condensation]

Hi there,

I hope everybody is well!

Does anyone know how much compromised the immune system actually is in percentage if you take for example

150mg Azathioprine and 5mg Prednisolone for Wegeners ?

Has anyone experience with switching to Rituximab ? (after a year of the above, it seems mild symptoms are coming back) Why not just increase the Prednisolone?

Also has anyone heard of Abatacept. How useful are randomised controlled trials if you get the placebo and are not on proper medication for some time?

Many thanks and I wish you all the best, most of all keep your spirits up !

[jgold]

To answer your points on rituximab and randomised controlled trials -

1. I was on azathioprine. It's effectiveness decreased, meaning I had to go on prednisolone every couple of months to suppress flares. My consultant did not like me having this much pred., so replaced the azathioprine with rituximab. This has worked a treat, with no side effects. It's now over a year since taking any pred., and (fingers crossed) that is hopefully going to continue.

So - rituximab works for me, and my consultant is very chary of pred. I'm happy with that, because a by-product of having taken pred has been some bone weakening, for which I have to take alendronic acid. If I can continue to keep off the pred. there's a good chance I can come off the alendronic acid at the end of this year.

BUT of course, remember we are all different. I therefore suggest you discuss the pros and cons of rituximab v increased pred with your consultant.

2. I've not heard of abtacept. However at my first treatment for vasculitis - the "hit it hard" stage - the normal treatment would have been cyclophosphamide plus pred. However my consultant asked me to participate in a randomised controlled trial for a new drug in lieu of pred. I do not know what I was given - the new drug, pred, or possibly a placebo.

The important point is that the trial (4-5 months if I remember correctly), included weekly monitoring visits to the consultant, dropping down to monthly before the end. He made it clear from the start that if at any stage the trial was not working satisfactorily for me, he would take me off and switch to normal pred. Easy for me, as I'm largely retired and only thirty minutes from the hospital. Not so easy if you're in employment and / or have a long journey.

Hope this helps.

[Condensation in reply to jgold]

many thanks that is reassuring , good to hear that the Rituximab worked for you.

All the best

[lemon74]

Great answer by jgold. I too am on rituximab and find it has kept my vasculitis at bay with no side effects. I was told that this means my immune system is permanently suppressed for 6 months(this is how often I receive it). They will look to eventually stop this but I don’t have much kidney function left so they’d worry about another flare up as this may mean I require dialysis and a transplant faster.

I am off pred as really dislike this drug and worked super hard to reduce these and stop. I feel so much better for it.

I hope this helps a little and I wish you all the best with your ongoing treatment.

[Chris-Bromsgrove]

Hi, I'm taking part in a clinical trial called Aquivas. From what I understand it is looking at the apparent issue that people on Rituximab don't fair as well with their immune system as those on other immunosuppressants such as Azathioprine and Mycophenolate. It is looking to see whether there is any benefit in using two different pneumonia vaccines instead of the normal one. So it does appear that the Rituximab patients do have a harder time fighting off viruses etc.

[jgold in reply to Chris-Bromsgrove]

Useful answer from Chris-Bromsgrove, but worth saying again that we are all different. Apart from a couple of days flu-like aches and pains no more than twice per year, I've had had no virus issues since going on to Rituximab almost 2.5 years ago.

I know I'm lucky - but other people may be lucky too. To anyone offered Riuximab by their consultan, I'd say try it.

[Tbrz]

Hi, I’m on rituximab every 6 months and, although reducing, on 10mg if pred. I seem to pick up lots of bugs really easy, but my body acts so weird as then they go really quickly and the symptoms present really strange - it’s very odd I definitely don’t recognise my body. However, the rituximab has controlled my GPA so I am able to reduce steriods, which is good.

This time after my rituximab I have really struggled with mood, fatigue ( I’m ready for bed by7pm!) and aches in joints, so I don’t know why that might be?

I do know we have a depressed immune system so would have to careful in light of the Coronavirus outbreak.

Anyway, take care.

[Mooka]

I was on azathioprine for a few months before I started on rituximab. Rituximab worked much better for me for my Vasculitis but destroyed my immune system. I believe it happens to about 5% of us. The result was constant chest and sinus infections and then Bronchiectasis. My immunoglobulin levels dropped so low that I have to inject immunoglobulin weekly. My Vasculitis is in remission and I don’t take any medication for it. I do however have stacks of meds to help my lungs including nebulised antibiotics. I suspect this reply won’t help you much but I wish you well whichever route you take.