Reducing prednisolone dose

[Chrismag]

I was diagnosed with PMR and GCA in May this year. Miraculous results from taking 50mg prednisolone but my rheumatologist and GP both want me reduce the dose too quickly. I was symptom free on 20mg and after 4 weeks on this went to 17.5 mg for 2 weeks ,still symptom free, then to 15mg and unsurprisingly the muscle pain etc returned, so after 6 days on 15 I went back to 17.5. After 8 days on 17.5 mg, I still had bad symptoms, so went to 20mg 3days ago. Still no relief from symptoms.I have an appointment with my GP for 2 weeks time ( it takes at least a month to get an appointment, unless it's an emergency) . I realise from reading this and talking to other sufferers that it is much better to take it VERY slowly (dead slow something method), and wondered if anyone had any advice on where to go from here?

[PMRpro Ambassador]

As well as how you reduce - are YOU doing your bit towards management of the symptoms? The pred is only managing the inflammation - your muscles remain intolerant of acute exercise because the actual cause of the inflammation, an autoimmune disorder that is causing your immune system to not recognise your body tissues as self, is still chugging away in the background. To some extent like taking Lemsip and whisky toddies might make you feel less snotty and awful but the viral infection is still there...

Of course - you may also be hatching a cold that is making you feel rough as well.

healthunlocked.com/pmrgcauk...

Don't do anything until your symptoms have calmed down though!

[Chrismag in reply to PMRpro]

Thank you for the advice, but it has confused me somewhat.I will cut down on my activity, but what do I do for dosage? My GP whilst very nice, doesn't really seem to have much knowledge of pmr/gca, and the rheumatology department are unhelpful. I saw a rheumatologist in september , and am supposed to have a follow up in 6 months time ie March, but it always seems to be longer than they say, and they want a rapid reduction. So it seems like I need to manage the reduction myself, so could do with more advice? Should I stay on 20 and put up with the symptoms then put myself on the dead slow and nearly stop programme,or suggest it to my GP and see what he says?

[piglette in reply to Chrismag]

Chrismag, you are probably more knowledgable about managing your symptoms than your GP. If you have problems you should not try and put up with the symptoms, you should find a dose that makes you reasonably comfortable. Stick to that for a while and then slowly try and reduce. You can always tell your GP that is what you are doing. Rheumatologists often seem to want rapid reductions, they do not have PMR!

[Chrismag in reply to piglette]

Thanks for your advice. I think I will stay on 20 mg until after Christmas then reduce very slowly

[piglette in reply to Chrismag]

Good idea and you can enjoy your Christmas.

[tgca in reply to Chrismag]

I have been on 10 mg for GCA for a couple of months, tried reducing to 9 and symptoms began again so am waiting til after Christmas (and all that that entails!) before trying the dead slow method to 9 1/2 then 9 etc but really slowly. My GP knows I know my symptoms/ Meds so is happy for me to take control. As for the rheumy, mmmm, I don't think he has much idea or cares!!

[PMRpro Ambassador in reply to Chrismag]

Yes - that seems like a plan. Sorry, I assumed you were asking what to do for a reduction - and that really rather depends on how this 20mg dose works over the next few days. You don't start to reduce until your symptoms are stable - they aren't yet. We can't tell you to go higher - needs a doctor to approve that.

My comment about the activity side was really asking if you are resting/cutting activity that makes your symptoms worse. That is just as much part of management as the pred dose.

But why are they hell-bent on rapid reduction without close monitoring of your status?

[Chrismag in reply to PMRpro]

Thanks for your further advice. I will stay on 20 until I see my gp and probably until after Christmas. Will then reduce veryslowly.

[DorsetLady PMRGCAuk volunteer]

Hi,

Your doctors may want you to reduce quickly, but invariably it's a recipe for disaster - as you've discovered.

Personally, with agreement between myself and GP (who was willing to listen to me and learn about GCA) I reduced on a monthly basis in 5mg tapers, PROVIDED I had NO symptoms and blood markers were okay between the doses 60mg down to 20 mg.

Between 20 mg and 15mg I went in 2.5mg drops, then from 15mg to 7mg in 1mg drops, from then on to zero in 0.5mg drops.

As you say, I think you may have to have a plan in your head for reductions, but it is only that - a plan. Circumstances can change it, so you have to be flexible as well - no point in reducing if things aren't going well, so what if you have to stay on one dose for six weeks instead of four - better that than plough on regardless and end up with a flare!

You may find that in the next few days you feel better on 20mg - you can't always expect to be 100% pain free - if so, then good, but if not then perhaps you could try going up again, say to 22.5mg.

Whatever you do, do not even think about reducing again under you are sure you are symptom free, and if it were me, I'd leave it until the new year - too much going on between then and now.

Good luck.

[nancyannehanson]

My brief experience has been that of listening to these ladies on this site. I am currently on 30 mg of prednisone which is working and managing well. When I made attempts to drop down to 25 mg because the docs are pushing me my symptoms came back and it took me a week to get back to somewhat normal management. I think we are the ones that are going to have to work with and teach the Physicians about PMR. It's taking me 2 months to get into a rheumatologist and based on all the information I've learned from these amazing women, I am loaded for bear and to have a big discussion. These are our bodies these are our muscles these are our minds and spirits make them listen and slowly, very slowly, when you're ready drop the dose. I've been keeping a journal on what I feel physically each day, this may help you as well or it may not but we are all here for everyone.

[Chrismag in reply to nancyannehanson]

Thank you for your very helpful reply. It really is difficult to know what to do for the best isn't it? Good to hear from someone with the same problems.