Does anyone ever recover with their doctor’s prednisone reducing schedule?

[nallufl24]

When I was diagnosed, my doctor made it sound so simple. He gave me a reducing schedule which didn’t work. I relapsed on 10 mg prednisone and had to start all over again. After reading everyone’s story on here, it doesn’t seem that anyone recovers so quickly. I started Acetemra which helped me reduce again but I haven’t really followed his reduction schedule exactly as he said. I went a little slower. I’m now on 10 mg again which so far so good. He wants me to reduce 2 1/2 mg every 2 weeks but I’m leery.

[jensen0518]

That reducing schedule seems very aggressive remember this is not a race. I would probably recommend reducing 1/2 mg every week and see how you feel. If after reducing 1/2 mg if you feel ok I would reduce if you do not feel good then stay at the mg for 2 weeks. Once you get down to 5 mgs take it very slow like reducing 1/2 mg every 2 to 3 weeks.

I would recommend walking or riding a bike as exercise.

I have been prednisone free since July 2020

[Louisa1840]

That sounds far too quick! I think your doctor needs to understand that everyone is different and that there is no one-size-fits all method. Are you trying the DSNS schedule suggested on here? It's slow and very gradual and seems to work for lots of people. There is no hurrying this disease and if you try you will fall on your face! Personally I only use my GP for new prescriptions. I get far better advice from this forum and my own knowledge of my own body........

[jinoadby in reply to Louisa1840]

I also only use the doctor for prescriptions and blood results. I had two doctors from the same surgery giving me contradictory advice on tapering. I asked the second doctor just what I was supposed to do and who was I to supposed to

listen to, and got no answer. So I now follow this forum, and am doing ok.

[Seacat30]

No I began to fail quite soon. I tolerated the pain until I got down to 8mg but went back to 10mg for 2 months with GP agreement in October 2021. I have been dragging myself down again in 0.5mg steps since late December. It isn't easy but Rheumatology is pretty adamant now. They say reduce the pred or start another drug. They are currently allowing me a bit more time at 0.5mg a month. Just had an MRI to look for other causes. (Ouch laying still in that machine for over an hour really hurt!)

Based on my own struggle with 0.5mg drops I think you are being pushed far too fast and should slow that right down.

[2013mayo]

Hi, My rheumatologist has told me to reduce by 1/2 mg every 3 months, at this rate I’ll take a long time before I’m down to zero, if in fact I get to that level. Every so often I get a flare and have to up my pred, so go backwards regarding reducing.

Good luck, hope it goes well for you.🍀

[Chrisellie]

HiMy reduction program with Actemra/Tocilizumab is in my profile. This worked well for me but we are all different.

Good luck

[Caroline2079]

I am writing as a exnurse also someone on 17.5 mg Pred. for GCADecreasing is very individual and dictated by the disease process and the input of medical professionals.

But it is worth bearing in mind that there will be some individuals very small in number- I am in that cohort- who have been on steroids for many years for this and other conditions.

The adrenals are the glands which naturally produce hormones that mimic steroids, if they have not had to work as it were, then they stop functioning.

Cortisol tests will be done to see if they still function- in my case not- so I will be on 6 mg Pred for life . It is called a physiological dose. But side effects are nil, they are replacing the lost function of adrenals.

The vast majority of you will completely avoid this.

[jinasc]

GCA diagnosed August 2021 from your profile (BTW which country are you in? )

I am assuming USA as Actemra would not be started quickly as that in UK.

I would be leery as well and perhaps try 1mg and see how that works.

[nallufl24 in reply to jinasc]

I am in USA.

[Reader7]

Good question! I was diagnosed in June...by my doctor's reducing schedule, I would be done by Christmas. I was...three years later😊

[PMRpro Ambassador]

How long have you been on pred from the start?

Even on Actemra there are still two factors to be considered.

In the clinical trials for GCA it was found that Actemra only got half of patients off pred altogether, the rest required an ongoing dose of pred, often IRO 8-10mg. This is because there are 3 different mechanisms which create inflammation in GCA. Actemra is a biologic drug and they only work very specifically on one thing. If your GCA is due to the other two mechanisms, then Actemra has no effect at all on the inflammation, and you require pred to manage that inflammation. It isn't known how many causes of inflammation are involved in PMR.

The other factor is how long you have been on pred - down to 10mg you can reduce quickly, below that you need to slow down. especially below 7.5mg. While you are on pred above 7.5mg, the adrenal glands aren't stimulated to produce cortisol which the body requires to function properly - it uses the pred that is available to it so that doesn't matter. However, this adrenal function does not return immediately as you reduce the dose of pred and that can result in a state of adrenal insufficiency while the adrenal function is waking up. For best results and safe reduction, the tapering must be SLOW, and 2.5mg every 2 weeks is NOT slow. You might get to 5mg without too many problems - but from there on, it would be far too fast and you could end up quite unwell.

Actemra makes a BIG difference - until you get to the very low doses of pred and then it is a different matter. In the clinical trials for GCA the Actemra was started immediately after diagnosis and the tapering was fast - patients hadn't been on pred for very long and that also helps with the return of adrenal function but even then, it isn't immediate.

PS - after 8 months on pred, you will almost certainly struggle at 2.5mg every 2 weeks - everyone is different but it is likely to take more than 2 months to get from 10 to zero.

[nallufl24 in reply to PMRpro]

I have been on pred since July 2021. I’m frustrated with my rheumatologist. I told him I didn’t want to reduce so fast but he said no, he wants me to reduce 2 1/2 mg every 2 weeks. Once again I’ll probably do my own thing. I don’t see him again til April. Nobody wants me off of pred more than I do but going back up is so disappointing and I don’t want to do that.

[PMRpro Ambassador in reply to nallufl24]

It is just adrenal function now - and that takes time as I explained. Most doctors stop panicking when you get to 8mg and let patients go slowly. They are in such a hurry now!!

Did you see the post in the last few days about the gentleman who reduced from 10mg to 3mg between xmas and now? He collapsed with a heart rate of 190-ish - almost certainly an adrenal crisis, and that is the speed your doctor is telling you to go at. I had a day in hospital last autumn because of a tachycardia like that - and my pred dose is plenty to cope with adrenal shenanigans!!!!

[nallufl24 in reply to PMRpro]

I did see that. I just don’t understand these doctors. He’s not a young man. I’m sure he’s had plenty of experience with patients on prednisone. I wouldn’t know any better if I didn’t read what everyone here has written.

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

Yes but you must remember most people on here have issues with tapering - that’s why they are here. If they had no issues - as some don’t appear to - they wouldn’t need our advice.

So perhaps this forum doesn’t give a true picture of ALL PMR/GCA patients…

or maybe he’s just been lucky with his!

[nallufl24 in reply to DorsetLady]

Good point

[PMRpro Ambassador in reply to nallufl24]

I don't know - I read a paper about study on patients experiences with methotrexate compared to what the doctors thought. They thought that MTX was very effective and well tolerated by the vast majority of patients and they took it happily for RA. The actual figures were that for about a third it didn't control their RA symptoms well enough so they stopped within a year and switched to something else, for a third the adverse effects were intolerable and they also stopped and were switched to something else. Only about a third actually said it helped them and they could take it.

So the disparity between what the doctors think and our real lived experience is rather large, And even endocrinologists were surprised at the number of patients who struggled to reduce their pred after long term treatment because of adrenal insufficiency - but they actually bothered to do the tests rather than just assuming the patients were doing fine. There was a lady on here who felt fine at 2mg pred but her rheumy was one of the conscientious ones who did a synacthen test - which showed she had no reserve adrenal function at all. Something as extreme as that is probably fairly rare - but it is always a possibility. And we know a large number of patients on long term pred are at least in their mid-70s or above - and assume the fatigue etc is "old age" and don't complain as much as we younger ones who expect to function rather better!

[Mayadill]

Personally speaking, no. This made me laugh, though the horror stories on this site of dogmatic doctors are far from funny. I got down in an orderly fashion from 20 to 10, then relapsed badly and put myself up to 20. Also saw Consultant and had CT 'to make sure nothing else is going on', then started gingerly to go down again and stuck at 10, attempts to reduce thwarted by becoming symptomatic in my hands. I'm disabled and into furniture walking. Malfunctioning hands not something I can put up with. Kept intermittently trying to go down. Must have been on 10 for 8 months,until finally it was fine and I'm symptom free though easily tired on 8.5. As so many others have said, this disease has a mind of its own and doesn't care what your doctor thinks it should be doing. 7.5 here I come! Zero is approaching, cross fingers no more glitches.