Off meds but anxious 😟

[Webbyj]

Hi all. I have been off Azathioprine and prednisolone since April 2019. Whilst I’m glad I’m not on them I feel vulnerable and anxious about relapsing. (I was taken off them due to adverse side effects) At the time my consultant felt that as I was doing well without them there was no need to put me on anything else. My question is is there anyone else out there who was taken off meds and were they offered any alternative? Also how long have they been ‘Med free’? I have, since coming off, had a heart attack and a stent inserted so am on heart medication. There is some opinion that my Vasculitis caused this but my bloods have been ok. Does anyone have any experiences to share about coming off meds?

[foweraker]

Ive been off all meds for 7 years but sadly have now come out of remission and back on steriods and due to start a new round of treatmentBeing offered a trial drug which is not as toxic as the drug used previousy, but quite anxious about this though! As the other drug worked and stopped the destruction of vasculitis.

Good luck!

[Webbyj in reply to foweraker]

Thanks for sharing. So sorry to hear that you have to go back on meds after doing well without for 7 years. Did you come off because you had to due to bad side effects?

[foweraker in reply to Webbyj]

No I was on ritixumab no problems with that drug

[foweraker in reply to foweraker]

Stress bought on my relapse

[Webbyj in reply to foweraker]

That’s what concerns me! How are you coping now?

[foweraker in reply to Webbyj]

Back on high steriods which mask the pain, start treatmebt in 2 erks

[Hidden]

Hi I came off azathioprine end of 2016 wasn’t offered an alternative,I am fine still have small flares but I use meditation ,reiki self healing ,turmeric and have an earthing sheet on my bed . It may be worth looking at the earthing research there is a book earthing by Clinton Ober it reduces inflammation and from what I believe affects the blood cells makes them less sticky . Earthing was a game changer for me it took about 4months of use but you could see it in my blood results.I went from constant inflammation pv markers very high for over ten years to normal was amazing ! I hope you are ok wishing you well ❤️

[Maduza in reply to Hidden]

When you stopped this drug did you do it gradually (reduce dose ) or just stop ? I have been on it for 7 years but am now building up anti bodies so now not working.

[Hidden in reply to Maduza]

Hi I stopped taking it due to bladder problems so was told to stop straight away . It was a blessing as bladder was ok but never restarted azathioprine again . It would be best to ask your consultant as it might depend on your dosage ? I hope it goes well for you .

[Chris-Bromsgrove]

From what I have heard and read some people can get off all immunosuppressant medication and remain in remission. This is always a shot in the dark as everyone responds differently. A few years ago I halved my Mycophenolate dose after suffering what seemed to be perpetual viruses. So far so good and viruses are now much less of an issue. I remain ANCA positive, so my consultant is reluctant to make any further reduction in meds. I think you should look at this as a positive step. Providing you continue to have regular checkups and continue to monitor your own well being then any flare up or relapse can be dealt with quickly with an alternative medication such as rituximab

[russellk3]

Hi Webbyj I have been off all meds for GPA since 2019 I felt I had to try and see how I got on as I hate taking meds all has been well so far and i still have check ups every three months just to be on the safe side wish you well for the future

[John_Mills Volunteer]

My medication was discontinued nearly 5 years ago, which happened to be Methotrexate at that time, it was not compatible with the treatment I was about to have for prostate cancer. I have been in full remission from the vasculitis since then. I had been in clinical remission for about 10 years before stopping any medication completely. I was diagnosed with GPA exactly 20 years ago next month.

I am always ANCA positive, even now in remission. I have regularly blood tests every 3 months and still see my Vasculitis consultant every 6 months.

So it’s essential you are monitored and not dropped off the system.

Prof Jayne said many years ago, all those diagnosed with vasculitis who manage full remission should always be monitored at least once a year. It is also important to monitor yourself for any returning signs or symptoms.

Vasculitis has the potential to relapse so it’s always important to remember this but don’t let it dominate your life.

[Webbyj in reply to John_Mills]

Thank you John. I am being monitored and although my MPO marker has begun to creep up slightly on last 2 results, my consultant is not concerned. I guess I will have to trust them more! Not easy as I’ve relocated and am now under a new team I have never even met due to COVID-19! So glad you have remained in remission for so long

[Vo321]

I know this is a delayed response but I'm sorry to hear you experienced such a traumatic event. I'm hopeful that the stent will work to prevent any further problems. Wishing you less stressful days and more clarity on any concerns you may have.

Kind Regards,

Vo321