reducing immunosuppressants

[Main1234]

hi

Looking for some advice regarding reducing immune suppressants and personal experiences.

my OH is due to see his consultant in 3 weeks time and at the last appointment 1 year ago he mentioned that if he was still stable he would look at slowly reducing his MMF.

he has had GPA vasculitis for 7 years now and received usual medication ie cyclophosphamide, RTX and AZA before being on MMF. He has remained stable on this regime and his blood works have all have been good.

I’m obviously concerned that with a reduction of medication he may well relapse or have a flare.

what are others experiences in reducing medication. How long did you stay in remission? I know every case is different but just needed some reassurance tbh.

thank you

[philtw]

I have GPA for 13years and every time I reduce steroid down to 5 or 6mgs I relapse, meaning I have to increase my steroid up to 15mgs to stabilise again.

[Main1234 in reply to philtw]

Hi thank you and sorry about your journey. He has not been on steroids for a long time .

[Budapest in reply to philtw]

Hi Philtw,

I finally managed to reduce my lower levels of Prednisolone when I attempted this very, gradually, e. g. . 1/2 tablet every 4 weeks or so. I had no negative reaction to this regime at all. Previous swifter efforts to reduce made me feel very sick. I had occasional Synachen tests to ensure that my body was coping with the new lower levels.

[Investigator1]

Hi Main1234, I can’t give much advice on this because I will shortly be finishing RTX but as you and OH are good comrades to me on this forum all I will say is if a Patient feels ok, if the bloods are good why come off it? Is this a decision by the Specialists? If not my advice is stay on it if a good life is being had. But not a time to despair, it’s all about how a patient is monitored. If it’s a good regime it’s a good safety net, if it’s not then make sure it is. Belt and braces is the motto with GPA. Nick.

[Main1234 in reply to Investigator1]

Hi thanks Nick for your insight. I guess the consultant is concerned regarding long term use of immune suppressants ( tbh not sure what they are) but I tend to agree with you .. if it’s not broken don’t fix it!

Thanks again

[DorsetLady in reply to Main1234]

Any immunosuppressant is a drug that dampens down the immune system.

In laymen's terms it has gone a bit haywire.. and certain substances need controlling. Whilst the immune system normally helps your body and heals it, in some instances it turns that around and attacks it.

see these -

healthline.com/health/immun...

my.clevelandclinic.org/heal...

[LindaMRich]

Hello, I have had GPA for 9 years & the sane medication regime as your OH over the years, other than being stable on Methotrexate until 2021. The first Astra zenica jab set me off on a bad flare that year. I was changed to Mycophenalate. My early years were spent in the tropics, & I'm known to have some skin damage. However, being on MMf since 2021 my problems in this regard have escalated considerably with excisions for BCc's & SCC's. The GPA side is currently stable, so my consultant is considering a reduction in mycophenate in the new year to try & reduce the skin issues which are a known side effect of immunosuppresant medication. As with you Main1234, It will be interesting to hear of how anyone has got on when reducing their immunospp. dose. Thank you for raising this 😃

[Chris-Bromsgrove]

Hi Main. That was a very timely post as I've literally just started to reduce my MMF dosage. I have MPA and have been in stable remission now for 12 years. My consultant has always been reluctant to ween me off MMF because I remain ANCA positive. It has been stable at around 10 for a number of years now. This dose reduction has come about on my suggestion. I've had treatment for prostate cancer and I feel that a better immune system (especially lymphocytes) just may have kept it at bay for longer and may also help prevent recurrence. So, it seems we are both entering the unknown. Good luck and keep in touch. I would be interested to hear how you get along. Chris

[Main1234 in reply to Chris-Bromsgrove]

Will let you know how the consultation goes.

It’s definitely not an easy decision but guess it’s weighing up the pros and cons .

Good luck on your journey Chris

[zoe69 Administrator Volunteer Vasculitis UK]

I was diagnosed with GPA in 2014, managed to get off steroids in 2018 and to get off my immunosuppressant (azathioprine) in 2021.So far all is ok. Not that I don't have any symptoms or bad days, but nothing serious enough to say I am flaring and my bloods are stable.

[Main1234 in reply to zoe69]

Thank you Zoe that’s really good to know. I think my OH feels he will have less fatigue but who knows.

[SusanEleven]

For what it’s worth my rheumatologist (vasculitis specialist at a teaching hospital) told me that if my GPA stays as stable as it has been we’ll try stopping my rituximab after three years. (I just started it last year.) We went straight to rituximab as my first line of treatment when I was diagnosed in 2023.

I don’t have kidney involvement. My inflammatory markers are now normal. I’m almost weaned off steroids after 8 years (I was misdiagnosed by another doctor for 6 of those years.) The disease hit my lungs: “interstitial lung disease in the setting of vasculitis” is what my pulmonologist says.

My CT scan showed overall improvement late last year. My new scan is coming in November and I’m hoping there’s further improvement. That said, I feel lousy each and every day and that’s been consistent for years. The fatigue …

[yogarita1955]

hiI have been taking steroids 6 a day for 4 years and had no retixamab for 4years and been OK

coming down off lots more steroids takes a long time half a table every other day body has to adjust slowly