I forgot to take my prednisolone 8mgs and other meds this morning. I realised at 8.30pm.... because I noticed I was getting head pain.... temple pain, jaw pain and pain in hips, thighs, back and shoulders and have now taken my prednisolone 8mgs, but not the other meds. Does anyone think I should take extra prednisolone or should I wait till tomorrow to see if the pains settle down again.
I started on 60mgs prednisolone in about March this year and have gradually reduced to 8mgs without too many problems along the way.
Thanks for that. I’ll see how things are tomorrow. I’ve never missed a dose before. To be frank, I was beginning to think I was doing very well without even a hint of any pain, but this clearly shows me that the PMR and GCA are still lurking well and truly underneath.
I find it interesting and a bit concerning that all your symptoms came back so quickly. It may mean that you ought to slow down your taper, no matter what your current dose is, as it obviously isn't very deep below the surface. I hope you feel back to your new normal tomorrow. Cheers.
Yes, I was very surprised too. As it happens I just saw the Rheumatologist about 2 weeks ago and she slowed down my reduction from 1mg prednisolone a month to 1mg every 2 months, not because I had any pains but because, she said, in the case if GCA it had been shown that an even slower reduction would, hopefully, prevent the GCA coming back upon completion of prednisolone. so instead of being on prednisolone for another 8 months, I will be on it for a further 16 months.
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This morning I feel much better. I can move well. The only noticeable thing i notice is a very little numbness in my jaw..... I’ll see how that goes along as the day progresses.
There’s no point in thinking how long you are going to be on Pred - as we’re always saying - and I know it’s boring - but you need to on Pred as long as it takes.
Lots of doctors don’t like that concept - but PMR and GCA are different to lots of illnesses - they take their own time!
I well remember when I was diagnosed with GCA my ophthalmologist told me ‘you’ll be on Pred for at least 2 years, probably nearer 4 years, and maybe for life’.
As I progressed and read this forum I realised what a wise man he was - he was honest and didn't give me false hope of reducing too quickly.
He wasn’t far wrong - I was on them for 4.5years - but I’d also had it 18months before it was diagnosed.
So don’t think about how long you’re likely to be on it, just get on with life - and reduce when YOU feel able.
All that matters is Quality Of Life - I'm very lucky in having 3 doctors who think the same way: GP. rheumy and cardiologist.
You aim for the lowest dose that works as well as the starting dose did, when you find it you stick there but every 2 or 3 months try another 1/2mg reduction. If it fails - stop and wait again. One day it will work and you are that bit lower each time.
Agree with DL , no more tonight and take your usual dose at the normal time in the morning , then hopefully the two doses so close to each other will get that rebound of Pain under control without needing to increase your dose any further in the following days.
Agree that the symptoms came back so suddenly that your GCA / PMR is proving it is definitely still " active".
Although , it's amazing that it hasn't shown it's ugly head in a Flare before you reached
8 mg it proves that at the moment that dose is the absolute minimum dose you can take without the symptoms reemerging again , and at the least , you should discontinue your taper until you have discussed this with your GP or Specialist.
You may need to stay on that dose , or which ever dose brings the symptoms back under control if you need to increase in the next few days , for a few months before you consider tapering again.
You could prove this need to your Doctor's and get their approval on a sensible, cautious suspension of your current taper because of the sudden reaction you got to the missed dose.
In some ways , it could do you a favour and stop you heading into " Yoyo Land" as you move forward.
Thanks for all that information. I’ve taken it all on board. It will be interesting to see what happens when my next reduction to 7mgs takes place. I’ll see what happens then.
Yes... I’ve read your post again and thought about what you said more thoroughly. I have to make an appointment at the GPS probably next week... so I’ll discuss it with the GP then.
I was shocked at how fast you have tapered. Just as a comparison I was diagnosed in oct 18 and started on 15mg and got to 9mg about a month ago. I havnt had any flares and my gp and rheumy were the ones who set my taper. I have decided to stay at 9mg because i have issues with my shoulder after a replacement damaged a nerve. When it settles down again i will start my taper again.
Then to carry on by reducing by 1mg a month but this has now been changed to 1mg every 2 months.
I haven’t had any problems with this reduction regime until yesterday when I forgot my meds.
My rheumatologist told me that he needed to reduce my prednisolone reasonably quickly from 60mgs down to 20mgs, providing I could tolerate it, because if the problems associated with being on high doses of prednisolone. Fortunately, I tolerated that reduction.
That is definitely shockingly fast, and not actually what is usually recommended, which is more like five months from 60 to 20 (a month at each dose), then using protocol for PMR, which will take well over a year, provided the disease has actually gone into remission. If after two months at 8 and no symptoms you do taper according to instructions it might be wise to conside .5 mg, to 7.5 rather than 7. Many if not most of us taper in very small steps once we are in single digits.
I don't have a problem with speed when it works - but at 20mg he should have slowed right down. I have the impression over the years that when people reduce very quickly the flares, when they come, are bigger and harder to manage. And when they set you off quickly again it compounds the rror.
I started at 50 in March same time as you. currently at 27.5 and not great. I have also added MTX along the way. So the others saying your taper was quick are correct in every way
Gosh... I can see what you are saying. Have you had breakthrough pains along the way?
Until yesterday when I forgot my meds I didn’t have any breakthrough pain. I think if I had had breakthrough pain... I would have had the reduction regime reduced.
Here is a link to the Bristol paper which gives the method a doctor should at least start with (for both PMR and GCA) although many of us need the actual progress to be tweaked as time goes by:
I often say I think forgetting the dose occasionally isn't always a bad thing, it reminds us why we take it!!
I fear I wouldn't describe that as a gradual reduction - from 60mg in March to 8mg now is very fast. There is study evidence that shows GCA is active even after 6 months at high dose pred - that means at above 20mg. Under most better reduction approaches you would still be at between 15 and 20mg even with a 10mg/month reduction to start. Everyone I have known with GCA has taken IRO 6 months to get to 20mg and it is said that GCA tends to relapse quite a bit in the first 18 months.
I'm pleased to hear your rheumy has realised that slower is better in the long run - but the speed of reduction should slow from 20mg. No reduction step should be more than 10% of the current dose and you often need at least a month on any dose to be sure it is still enough. You may have managed to shoot down to 10mg - but one top expert then kept his patients on 10mg for a year to allow the body to catch up and found that reduced the rate of relapses from 3 in 5 to 1 in 5.
I slept pretty good overnight. This morning the pains have gone.... just numbness in my jaw early this morning, which is still there now. I’ll just have to keep an eye on that.
I guess I must have been lucky in terms of the reduction regime they set out for me.... no breakthrough pain.
As you say, forgetting the dose and then the ensuing pain can make us realise why we are on the prednisolone. It certainly made me realise.
My Dad had PMR and I can’t remember his treatment exactly, but I know he was never able to come off the prednisolone. He was still on it when he died. If he missed a dose he always knew it, because the pains returned and it reminded him that he still had PMR.
Thanks for all the information. It is very welcome.
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