I was diagnosed in August after 4 months of pain. I was put on 15mg prednisolone for 3 weeks, then 10mg for 4 weeks, and then reduced to 7.5mg. My rheumatologist says I will be on this dose for 2/3 years. However, I would like to get to 5mg (if at all possible) and I wondered if I could try the dead slow and nearly stop reduction plan (with thanks to PMRpro) or is it too early? I feel very well, a few minor aches which may be nothing to do with PMR as at 77 I expect them, but I'm able to exercise, walk, climb ladders, do housework with no problem. My rheumatologist is great, old school though, so he's more inclined to recommend procedures that have been in place for years. Any thoughts or suggestions would be greatly appreciated. Thanks
How soon can I start the slow taper?: I was... - PMRGCAuk
How soon can I start the slow taper?
A lot of us would have said you should use it from the start - never too early! You are only ever part of a month behind. And it makes things more comfortable. You have been lucky so far but it is possible that you will get lower.
I wonder what he'd have done had you struggled at higher doses. But it is a bit of a parallel to the Bristol approach where they take 3 months to get to 10mg and then the patient stays there for a year. It reduces the incidence of flares from 3 in 5 to 1 in 5. I think it is because they let the disease activity die down a bit before going further - instead of pushing on irrespective of the result.
If you’ve got from 15mg to 7.5mg within 3 months without issues - then count your blessings.
You might like to get to 5mg, but that really depends on your illness, if you need more, you need more.
Did your Rheumy say you would be on 7.5mg for 2-3 years, or did he say you would be in Pred for 2-3 years?
He said 7.5mg of pred for 2/3 years. He also said I'd responded well to the treatment because I'd been diagnosed early. My ESR was at 98 at the start and 5 just before my dose was lowered to 7.5mg. However, I know how fickle this illness can be (my mother had it as well as fibromyalgia) so I am counting my blessings and will try not to get too over ambitious. My mother had terrible trouble yo yo ing with the steroid doses but this was back in the 70/80's.
At one dose for 2-3 years does seem rather extreme.
As PMRPRO has said one approach is to stay at 10mg for a year, and Prof Dasgupta has said he sometimes keeps his patients at 2,5mg for a long time, even indefinitely.
Just keep going slowly, and at 0.5mg per month as suggested, but always bearing in mind that, as you say, PMR can be fickle.
Good luck.
Thank you. My GP whom I see separately from my rheumatologist, suggested that I might eventually be on a low dose indefinitely.
You might be, but most aren’t - it usually goes into remission unless you're unlucky.
Just as a matter of interest, did your mother's go into remission?
This bit I'm hearing a bit recently about "responding well because you are diagnosed quickly" might account for why the family members I think probably had PMR seemed to have it for a long time. They weren't diagnosed back then and treated - steroids were too new.
I've started hearing that too. It ties in with me taking over a year to get a diagnosis and still having it after 9 years, but where did this new theory come from?
Maybe they are taking more notice! Wonder if Sarah has come across it.
From what I remember, I don't think so. She was always in pain but seemed better when she was on high doses of steroids. As a result, though, she ended up with osteoporosis so badly she spent her last years in bed. She also had fibromyalgia and I think her GP didn't really knew how to treat both issues. Treatment was a bit hit and miss in those days.
Yes it was...
I can only remember my maternal grandmother sitting in an armchair - assume she had osteoarthritis and/or rheumatoid arthritis .....as far as I know she wasn’t on steroids. I know she had RA because she had to give up knitting/needlework because her fingers became all disfigured.
My sister also ended up in wheelchair due to OA, so I count myself lucky in that although I have it as well, I’ve managed (so far) to have 3 joint replacements and keep the other joints controlled without strong drugs.
My GCA seems relatively mild (albeit rather traumatic initially) compared to theirs!......and no osteoporosis despite 4 years of Pred.
Glad to hear you haven't got osteoporosis. I had a bone density scan earlier this year and have a little bit of osteopenia in one hip and the lumbar region. I'm taking Calcium and Vit D now and eating very healthily. Fingers crossed. Good luck to you and thanks again for replying.
still is ...
You could try to reduce half a mg say every four weeks and see how it goes. I would not go over one mg. You have just got to the point where the adrenal glands have got to wake up and this can have an affect.
Thanks for your reply. I'll take your advice on board.
One other thing to keep in mind is individuals have different responses to pred because we metabolise more or less efficiently than the average. I believe that I am very sensitive to pred and am utilising a very high percentage of the dose. I was able to taper to 3 by the end of the first year. However since then (three years+) I've been around 2 mg, lowest best dose, with occasional attempts to taper further. Other people may have to stay at 7 or 5 to get the same benefit. I'd say, if your symptoms are completely controlled, you could at any time you want start a very slow taper to a lower dose. Use a plan like Dead Slow Nearly Stop and see how it goes. Only taper if you feel as well at the end of each half mg taper as you did at the beginning, and do expect to find a level where you have to stay for a while.
I am one of those who reduced too quickly early on and had endless flares. 8+ yrs since diagnosis and I have just got to 6mg. I was there once before but had a major flare. I would urge caution and patience although 2/3 yrs at 7.5 seems a bit strange. Your body will let you know!
Thank you. I'm rethinking about reducing just at the moment. We are just about to enter the Cyprus winter and know that aches and pains can get worse with a change in temperature. I might just carry on at 7.5mg until I see my rheumatologist in December and discuss it with him. I have been very lucky so far, getting to this dose within 3 months so I think I'll be a bit cautious from now on just in case my adrenal glands don't reactivate when I need them to. I don't appear to have any major side effects from taking the prednisolone, apart from a slightly fuller face (which I don't mind at 77!).
That sounds sensible. Wish we had your winter warmth here! Have an aunt near Paphos, whereabouts are you?
We live about 12 kilometres outside Paphos towards Limassol in a village called Anarita. We are blessed with good weather most of the year but it's very hot in July and August, and this year also September and October. When the temperature drops to 25C we feel chilly!!
When people can reduce so quickly it makes me feel like a failure. I started on 15mg in January and still only down to 11mg, Have managed to get to10mg once but had to go back to 15mg because of pain so taking it really slow now 1/2 mg at a time.
Not a failure - just different. Any one who is going to need only a low dose will probably be able to reduce quickly at first. That may be because they absorb almost all the oral pred they take or because the autoimmune part of the illness is not very active or aomething else. But they will also hit a wall at some point - just lower than yours. But you may be only absorbing half the pred - you can't tell.
Don't worry Sampete. I started at 15 mg in February and am now at 20mg but feel I really have a better understanding of what to do - thanks to this forum. It is such a learning curve on so many levels. So you are by no means bottom of the class. And as we are constantly being told through everyone else's experience that it is far better to take it slow. You are doing great!
I too started at 15mg of pred. in August, but have never been pain free. However in the early weeks I went up and down like a yo yo - one day would be very painful, the next much better. I am now on 10mg and feeling more stable; in the mornings I am stiff and sore but much better by the afternoon (apart from today!) I am about to reduce to 9mg and wondering if I too am taking things too quickly. Could the inflammation be bad for the arteries? I am SO grateful for this forum and the PMR GAC organisation.
I wish I could discern a pattern, but I think the bad days tend to come after the good days! You are right - maybe I need to rest more; the problem is that until August I felt middle aged and fit....now I feel old!! I am 78 but didn't usually feel more than about 55 - 60 until PMR hit. It is quite an adjustment.....
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