Has anyone come off prednisolone completely for Vasculitis GPA?

[Wyllow]

Hi everyone, I have been diagnosed for a year with GPA, I was very ill by the time I was diagnosed with an ANCA count of >177, it has just got down to 0 and I am on many medications including Methotrexate, Micophenolate Mofetil, Co-trimoxazole, 2 lots of blood pressure meds, Prednisolone and others. The prednisolone has made me feel worse then my illness, I have gained a terrible amount of weight and the depression it’s caused is the worst I’ve ever had in my life. I was wondering if anyone has been able to stop the prednisolone and if there was an alternative?

[zoe69 Administrator Volunteer Vasculitis UK]

I have ☺️It took me a long time and had to try various methods, but I have been steroid free 4.5 years now.

I attach my prednisolone journey, if that helps.

Prednisolone journey

[Wyllow in reply to zoe69]

Hi Zoe, thanks so much for sharing your prednisolone journey, that gives me so much hope, stay well!

[eh66]

I was hospitalised December 2020 and diagnosed Jan 2021. After 2* cyclophosphamide and rituximab, my consultant weaned me off Preds over about 4 months (90mg initially). I now take Statin, blood pressure med, plus a low level antibiotic for damage sinuses. I have been back for rituximab top ups approximately every 6 months. I would agree that the preds were not easy to live with, they disrupted my sleep and made me want eat everything in sight. I basically put in 7 kg that I had lost at the worst of my episode in a matter of weeks. Not great.

For the moment I am pretty stable. I eat a lot of fresh fruit, vegetables and fibre to naturally boost the immune system. I also do as much daily exercise as my body will allow; cycling, calisthenics, stretching, walking the dog, hiking etc. My consultant reckoned that my lifestyle contributed to my remission. I also do mad things like daily cold showers to build resilience.

I watch my resting heart rate like hawk. In hospital my resting heart rate was nearly 90. It is now 55-59. Long may it continue.

[Wyllow in reply to eh66]

Thank you eh66 for sharing. I try to eat well but the continuous driving hunger and depression make it so difficult. Also Omeprazole has completely ruined my already sensitive stomach. I stopped taking it 2 months ago and my digestion system has still not returned to normal, any more than a small amount of fibre, veg, fruit all the good stuff just causes other unwanted side effects. Before the GPA meds I only had to restrict a few things now all my stomach can take is white stodgy food, not great when you are hungry all the time and desperate to lose weight. I will talk to my rheumatologist again about trying to come off the prednisolone, keep well

[Investigator1]

Hi Wyllow. I like you was +177 when diagnosed in December 2019. My ANCA count at the moment is between 5 - 6, The only drug I am now taking is 6 monthly infusions of Rituximab. I finished with Prednisolone 12 months ago and for the reasons you have stated I don’t want them back. I think I can say my improvement has been a lot slower than yours but with less trauma. I gained about 10kg but it’s coming off now as I am keeping my Carb intake at around 50-100 per day. I did have a bit of depression but more anxiety really. Considering where you are now, which is brilliant regarding your count it may be worth a discussion with your specialist to see where drugs can be tapered. You have certainly had the kitchen sing thrown at you. All patients are different and so are consultants but worth a conversation I would say. Nick

[Sandyshores]

Hi, I came off Prednisolone, I first went on it before covid, then was left on it for 2 years during covid, so about 4 years. I came off it slowly lower dose one day, normal the next, but did have to jump back to a higher dose a couple of times, but I've now been off them for over a year and am on methotrexate etc. Feel a lot better not being on them. Hope you get to begin your steroid free journey too.

[EGPAGuy]

Hi..amazingly I work for a company where 2 of us have Vasculitis..I have EGPA my colleague has GPA. Whilst I am on a combination still after 2 years which includes pred my colleague has been pred free for the past 5 years..she does still take Methotrexate once a week at a low dose..cant remember dosage but will ask her and report back. There is definitely a pred light at the end of the tunnel for you if her experience is anything to go by. I have reduced pred from 40 to 5.5 creeping down by 0.5 a month which for me has been enabled by getting Mepo. Was stuck on 15 for a long time pre Mepo (combinations with first myco then aza). Hope this all helps and best of luck. Lev

[Wyllow]

Thanks so much everyone, it’s great to hear that there is light at the end of the tunnel! I couldn’t see a way forward, now I have some hope of eventually coming off pred.

[Mooka]

I got right off pred, had to go back on it when I had a flare. I haven’t taken it now for probably four years. No vasculitis meds since last rituximab in 2017. I do have immunoglobulin though for my low IGg which I understand can also be used to treat vasculitis. The weight does start to come off when you stop the prednisone but you will need to work hard to lose the rest. Please don’t despair you have achieved so much already you just need to reduce the meds now.

[eh66]

My wife does not have IBS but has had issues relating to food intolerance. She found this helpful. hopkinsmedicine.org/health/... She is now at the stage of trying to figure out which foods actually trigger her by introducing things one at a time.

I would also check out:

theplantfedgut.com/book/

drwilliamli.com/dietary-man...

theguardian.com/society/202...

Diet is definitely a juggling act, and there is unfortunately a lot of pseudo-science and poor science about does not help. That said, there is a huge amount of good work and very large scale studies that will hopefully bring you and others in your predicament some relief.

[Wyllow]

Thank you Mooka and everyone. And thanks eh66, I’ll have a look at the literature links, hopefully something will help. I’m waiting for a call back from my rheumatologist about the pred.

[Johndeeregreen]

I too finally off prednisone after a full year!!Methotrexate weekly and rituximab 6 month plan. There is a newly approved alternative to prednisone call Tavenos or avacopan showing great results especially in the autoimmune disease community. Hang tough. Greg

[Wyllow in reply to Johndeeregreen]

Thanks Greg, its good to hear you no longer have to take prednisolone. My specialist has not even mentioned rituximab to me. I’m unclear why so many people on here have been given it, is it when nothing else works? My doctors say I just have to keep taking pred so my ANCA count doesn’t go up again.

[Johndeeregreen in reply to Wyllow]

Not sure but we tried to get me off asap. Niw doing well with methotrexate and rituximab every 6 months

[Wyllow in reply to Johndeeregreen]

Thanks for your reply. Glad you’re doing well. Best wishes to you

[ZiggyDiego]

yes I have, three times now. First time on a clinical trial: a very fast withdrawal which was very painful and difficult but I felt brilliant once I was off it. Sadly I relapsed so had to go back on. The effects of the prednisolone in that relapse made me suicidal so we knew I had to stop taking prednisolone altogether so second time a slow withdrawal over 9 months, reducing 1mg a month. Hard work but it was worth it. I lost loads of weight and my mood improved, but so did my reflux, musculoskeletal issues and I got less infections. Then I had a bad flare of my scleritis in 2020 so did a very short course of 20mg pred, reducing almost immediately which contained it till the Rituximab worked. coming off that time was much easier. I've not been on it since. It's hard at times, especially when I'm due my next Rituximab as my pain levels are definitely worse but it's much much safer for me. I would urge you to get help with any mental health issues: prednisolone is well known for causing them but not often discussed by vasculitis doctors. Hope you can withdraw successfully.

[Wyllow in reply to ZiggyDiego]

Thank you for sharing your journey Ziggy, I’m glad the Rituximab helps you and hope you are able to stay off pred. My specialist says pred plays with your mind but offers no help how to cope with it, my doctors just say well it will be a long time until you are off it and up my antidepressants. It’s so good to hear people can eventually withdraw from it. Best wishes with dealing with your pain.

[ZiggyDiego in reply to Wyllow]

The psychiatrist I saw when pred mental health issues were at their worst was really helpful. She explained that the drug makes whatever you’re already feeling much more intense, so if you are happy, you’re more likely to be euphoric, etc. I always get a dose of it with my rituximab and I have a strategy now for managing it. But I’m not sure how practical it is if you’re on oral pred. Essentially I don’t allow myself to do online shopping without a few days cooling off period, same with posting on social media, I avoid people I know will wind me up. I ask other good people to rein me in (online or in person). I write down all my bad/good ideas and save them, again for a few days. I don’t watch the news. When I’ve sobered up I can get back to all that. Wishing you all the best with withdrawing.

[Wyllow in reply to ZiggyDiego]

Thanks Ziggy for sharing your strategies. I suffer from depression anyway and the pred has made it 10 times worse confirming what your psychiatrist said. I have appointments coming up soon, my rheumatologist says if my bloods are still good when I see them I can start reducing the pred again, can’t wait! Sending best wishes to you

[DazVin]

Hello, I managed to taper down from 80mg/day to about 20 from 2016 t0 2017 but then relapsed badly and after hospital intervention I was back on high dose plus changed from Cyclophosmadine to Rituximab. managed to taper off Pred by 2019 I think but was really ill, they did lots of tests and said that unfortunately my adrenal gland had not "kicked back in" as it should have after tapering off of Pred - result, now on Hyrocortizone for life! was not besdt pleased with this outcome but seems stable for now (touch wood) - good luck

[Wyllow in reply to DazVin]

Hi DazVin, I’m sorry coming off pred did not work out for you but glad to hear you are currently stable. I hope it stays stable for you. It’s so hard that everyone reacts differently to treatment. It took 11 months after many trips to the doctor and a emergency hospital stay before I was diagnosed with GPA. I have been on treatment for a year now but it’s still not getting any easier to accept I will be on medications probably the rest of my life. Best wishes to you

[zoe69 Administrator Volunteer Vasculitis UK]

I have GPA vasculitis with nose/sinuses, lung, abdominal, skin and joints involvemet. I was diagnosed in 2014. Had cyclophosphamide and high dose of steroid as initial treatment and azathioprine and tapering prednisolone as maintenance treatment. It took me more than 3 years to get off prednisolone, but I have been preds free since January 2018.

In June 2018 I started reducing azathioprine and all was going well, but Covid came and my doctor let me stay on a maintance dose to make sure I won't relapse and need hospitalisation. Resumed tapering in 2021 after having my covid vaccine and stoped the immunosuppressants in June 2021.

Fast forward August 2022, still in full remission, no meds taken for vasculitis (I take others, for BP, osteoporosis etc). I cannot say I am totally symptom free, but nothing major at the moment.

Kind regards,

Zoi

[Wyllow in reply to zoe69]

Thank you Zoi for sharing your experience with me. It’s really great to hear you are no longer on Vasculitis meds. I wish you the best and hope you stay in remission, it gives me hope that I won’t be on all these meds forever.