pred and life after

[alex_m]

I don’t really know I’ve been told I’ll on low dose pref the rest of my life, to keep my vasculitis at bay currently on 25mg a day

[Ellamaye]

Don't know what?

[ludo in reply to Ellamaye]

Hi Alex. I've been on steroids since my diagnosis of GPA in 2002. I'm now on 5mg of prednisolone for life but it's not to keep to keep my vasculitis at bay.Because of long term steroid use for my condition my adrenal gland can no longer produce enough cortisol. I had a synachren test to find out. Not sure that's spelt right.

Hope this helps.

[May7 in reply to ludo]

Your experience mirrors mine, ludo. I spent several months very slowly tapering off a 10mg dose of Preds, when I became very ill. I ended up in hospital with a kidney flow rate of 9. A biopsy revealed that my body wasn't making its own corticosteroids, so after a short high burst of preds to straighten me out, I remain on 5mg per day for the foreseeable future. I'm also on Mycophenolate to control my Vasculitis.

[StoicMan]

My consultant was against me being on prednisone long term and moved me to methotrexate. Has that been mentioned as an option for you? I must admit I do have side effects after taking my weekly dose of 20mg, mostly tiredness and nausea for a day or so.

[Kenneth]

I’ve been on steroids for the past 27 years. Like most patients I started on a high dose and for the last 12 years have been on 5mg. If for some reason I miss a day my body really knows it, so the low dose is so beneficial to me. I have ANCA positive GPA

[eh66]

I have weaned off preds completely (90mg to zero). I take a Statin and Ramipril (technically blood pressure med) to maintain remission.

[Main1234]

My OH is off steroids ( only used at initial diagnosis and flare) now on mycophenolate

Everyone is different with their medication although the diagnosis is the same.

[alex_m in reply to Main1234]

I came off all drugs gradually and had another stroke a couple of months ago

[Paprika60]

I don't know how you have been on Pred. but I would like to suggest a second opinion unless your doctor is wiling to put you on some other alternative such as Mycophenolate or biologics (Rituximab or Belimumab) which is costly. I was with a doctor, a world leading lupus expert at UCLH in London who planned on keeping me on 5 mg. for the rest of my life. This was not good enough for me. I searched for another doctor and found an understanding doctor who agreed to help me wean it off in the long run. He thought it was not right to be on steroids for life unless absolutely necessary (in such case as Ludo above). With his help, I managed to stop completely after three years with him. Please ask for an alternative. 25mg for life seems unreasonable. Steroids is the cheapest drug to give but horrible for the patient the long run. Please don't give up and ask nicely for an alternative and if not look for someone else. I even went to Addenbrooks to a second opinion twice! Best wishes and good luck!!

[alex_m in reply to Paprika60]

I’m on mycophenolate as well

[woollysox]

Hi Alex, a couple of years ago my consultant insisted that I come off the Pred. I’d been feeling quite well on 10mg in addition to Mycophenolate. Since then my PACNS has been worsening and I’m more or less bedbound and mentally useless. Regular MRIs have shown two new lesions in my brain in the last year. The doc doubled the Mycophenolate to 2000mg per day in July and now wants me to go back on the Pred, starting with 5mg, possibly increasing to 10. Just can’t win!

[Lovsterlover]

Alex. If it keeps the vasculitis at bay it’s worth it. I suppose u will have to have regular blood tests and bone density scans to check your health. I am in the middle of a severe flare at moment and the nerve pain is awful. I have had an mri and also seen vascular surgeon who have done various tests and they say no infection. Def my vasculitis. No painkillers seem to help just make me like a zombie. Have to make an appointment with my rheumatologist again. Probably have to start taking azothiaprine aigain. Anything to get rid of this pain xx

[Dazler99]

Alex,

I was on 60mg initially for 3 months and over the past 10 months reduced gradually to 5mg per day. I have been advised that long term use of steroids is not good and the aim is to get me off them completely.

I recently attended Addenbrooke’s and the consultant wants me to reduce from 5mg per day (by 1mg per month down to zero) but tasked my GP to sort a SST blood test to test my adrenal gland capability first:

gloshospitals.nhs.uk/our-se...

It was difficult getting my GP to sort this as they said it is a rare test but I have it booked this coming week. Hopefully this test will be positive so I can start reducing further straightaway.

Maybe you should mention the SST test when you next see your GP/consultant.

[Hidden]

I believe Prednisone is more of an anti-inflammatory than it is an immunosuppressant. To keep flares at bay, a drug like Azathioprine is used. Methotrexate does basically the same thing but is much harsher on the body. I have been in remission since 2019 and stopped all Vasculitis drugs at that time. About a year ago, I told my Neph that I would get these nerve pain flares anywhere on my body and that I felt lethargic during the day. He prescribed 5 mg Prednisone daily and it has helped. I have read that 5 mg is the highest dose that should be used on a daily basis especially for life. Also that >20 mg is what is needed to suppress the immune system to a point where live vaccines should not be used. I have plenty white blood cells and neutrophils so 5 mg does not seem to be affecting that. I would suggest to stay away from Rituxan unless you are absolutely having a major flare and need to get more suppression. Taking it every 6 months just to be safe is not a good idea in my opinion.

[The_Expanse]

Hi, I am on Methotrexate and Pred, I started In Jan23 on 40mg Pred for several months, then reduced by 10mg per month till i got to 10mg then i went down in 1mg increments per month. At 5mg which is a bit below when your bodies cortisol production should kick in i had a Cortisol test to check. It came back as 'sub-optimal' which made me laugh :-), I am at 94 when it should be between 140 and 600 so my consultant said stay on 5mg and has referred me to an Endocrinologist (I had to look that up ). So if that has not happened I would ask for it.