I'm a 51 year old male just over 1 year in and I have tapered as above without too many problems. General stiffness on occasion and one proper flare but otherwise reasonably good mobility. IE. Golfing is ok.
I'm just wondering if anyone else with a similar profile to me has any experience of how much longer I will be on the Pred or if I should consider another drug to finish off this illness perhaps?
Many thanks 💓 in advance for any assistance.
Best regards J 👍🏻☺️
Ps. Diagnosis within 2 weeks at 50. Felt 80 years old on first noticing something was wrong. On 20mg pred. Straight away. 2 weeks now. Started tapering . 13 months in now tapered down to 3.5 mg.
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Jondoyle
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"I should consider another drug etc" that is the holy grail which many research people have spent a very long time looking for the answer. Unfortunately there is no magic bullet to date.
PMR has a mind of its own, it comes when it wants and it goes when it wants. Then it is not cured, just goes into remission.
The Pred you are taking is to enable you to live as pain free as possible until it decides to go away.
You may be lucky, as some males I know, whose PMR has gone into remission within two years. Just remember it is not a race, the aim is to live as pain free as possible.
You might like to take a look at the Frequently Answered Questions in the Pinned post section.
Hi,My experience was a little different, Took me two years and three months to get from 30mg to 5mg, then another four years to get to zero. This might sound a bit extreme, but it is not that unusual; I think it takes most of us a lot longer to taper the last bit than the first bit.
I tell you this because having pmr means you need to have patience galore when tapering. Yes, some lucky ones do manage to get clear of pred in a quicker time, but as jinasc has explained there is no other magic bullet that is known of to get you there.
There is no drug that will "finish off" the disease as you put it - the pred cures nothing, it is a management strategy to deal with the inflammation created by an on-going underlying autoimmune disorder, and nothing else does it as well as pred as yet. Nor have they found a cure.
If you have got as low as 3.5mg you are almost at the dose that Prof Dasgupta says he keeps some patients on indefinitely as it reduces the risk of relapses. PMR is an open-ended disorder, about 1 in 5 patients is able to get off pred in a year, by 2 years it is a third of patients. But the rest may need pred for much longer, albeit at a very low dose. There are patients who find that 1mg, even 1/2mg, is plenty to mop up each day's dollop of inflammation and keep the symptoms at bay but if they try zero it isn't enough, the inflammation builds up again and after a couple of month the symptoms reappear.
The so-called steroid-sparers some doctors push have no real evidence to support their use. There are a few small and poorly powered studies for methotrexate, none of which agree! One said no effect, one didn't know and one claimed there was a small fall in the total pred dose but it wasn't until after a year that a significant difference could be seen. The group did a follow-up and found that even though the total pred dose was marginally lower, there was no difference in the pred effects which begs the question, why bother? Methotrexate itself has its own adverse effects and can be quite unpleasant to take. It can also make pred effects worse!
You aren't really reducing to zero - you are tapering or titrating the dose to find the lowest dose that works for YOU to give the same effect as the starting dose did. You do keep trying to get lower - but only if it works reasnably easily. Forcing a reduction never works - but the vast majority of patients do manage toget off pred sooner or later. But it takes time and patience.
you’ve done very well to taper to 3.5 in a year, but slowly is the key, pmr does its own thing.. I find it’s easy to develop a false sense of confidence when pmr is quiet and you can return to exercise. However as everyone has said there are no short cuts and it’s terribly disappointing if you get a flare & have to increase the pred. I couldnt get down from 2.5 and have resolved to sit it out for another month before trying again. Good luck!
Well that’s fantastic, I was a 50 yr old female , very active, when I was struck down . As you say feeling 80 , in fact some of the 80 yr olds I knew had more mobility than me. I reached 3 mgs in the same time frame as you . Now 15 yrs on and 10 more flair ups I remain on 5 mgs as my immune system can’t cope when I get below 5 mgs . I would suggest that you take the next stage very very slowly . Good luck and hope this is over for ever for you .
Good to see a more positive post than the average Jon.
Not dissimilar to you perhaps. Diagnosed 15 months ago when 56.
I took the view that this was a 2 year minimum play, so there was no point in chasing anything else. Currently dropping 0.5mg per month which keeps things simple. Currently at 5.5mg and going to 5mg on 1st October. No meaningful involvement from my GP who is still hard to get hold of, although to be fair they seem content to let me set my own dose regime.
Stiff and creaky first thing but not too bad once i get moving. No energy though and get a bit tired and lightheaded quite easily, so have packed up golf which is irritating. Probably could get round the course but it would stuff me for the next few days afterwards. Plus I don't enjoy playing badly.
I think age is on our side and i gather that men fare better than women generally.
Might be heading towards zero or v low dose by next summer ie two years but perfectly prepared for a drama at low doses early next year. We shall see. Looking ahead there seems to be no clarity at all on the simple question of whether one is cured, shall we say. I guess its just something that you just feel. And if you feel the same 6 months later then thats about it. Time will tell.
Basically its a massive pain in the arse, but i am better off than a good friend of mine who didn't get past 55 sadly.
Bit worried by your second paragraph Nick: Stiff and creaky..no energy. Sounds like you still have symptoms. I too was told to reduce in spite of residual symptoms and fatigue. Turned out it was a fight between me and PMR and you can guess who won! Prize was GCA.🙁 I'm not suggesting that will happen to you, of course, but I hope you'll be wary.
Ummm....yes thanks for your concern but no worries here. Its all relative to how i felt before. So a bit stiff when i get up but feel ok once i have had a shower and walked the dogs. If i do too much i get tired quicker than i used to. I know i have an illness and thats irritating but all manageable so far. All the best. Nick
Many thanks for your assistance and kind reply Nick,I do have the creaky bit in the morning's but I think I'm okay on the tiredness front. I could play 18 holes daily without much trouble as long as I'm on the correct current dose of Pred. Hope this helps.
I never made is below 9mgs in 3.5 years, so from my perspective I’d stay at 3.5 indefinitely and wouldn’t push a further reduction. It is such a low dose the negative side effects are minimal (according to my GP who has encouraged me to aim for 5mg). If you do decide to taper to a lower dose, please do go very slowly and only drop .5mg as I’ve heard from many that tapering beliw 5mg could be tricky. It’d be a shame to flare at this stage. And it would be worse to develop GCA (the “sister” condition) due to unchecked inflammation.
I’ve also read that males have an easier go of it overall. So perhaps gender is on your side. Well done thus far!
Hi Jondoyle, I was diagnosed in May this year and put on 15mg prednisolone. Stayed on that dose for 3 weeks then doc took me down to 12.5mg for 3 weeks then 10mg for 3 weeks. Been going down 1mg now every 2 weeks now on 4mg. No real probs at the mo other than stomach/gastric from the lansoprazole which thd doc has now taken me off. The intention is to co.e down 1mg every 2 weeks until I stop. My partner had a similar experience but his doc took him down 1mg per week in the latter stages and he was fine. Hopefully I will be the same. Good luck
Hi Jondoyle. My recent history is there and I too welcome your positive post. Well done so far and hope it continues. PMRpro and others have give you a really true steer through this and I heed their advice in my journey. I have both PMR and GCA so the trip has been a trial but I am in a good place now. I'm also hoping for complete remission but don't expect it to happen anytime soon. Everyone is correct. this condition is the ultimate arbiter, uniquely, not you. I'm a pushy bloke who wants to get well fast but I've had a real eye opener with this one and had to adjust accordingly. First time for everything.
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