Still can't get down off 15mg prednisolone

[Claremarie83]

Hi everyone, I've been on this prednisolone journey since late July/early August, with what I've learned are flare ups, so with GP advice I have been seesawing a bit on the prednisolone. I seem to sometimes manage to get to about 12.5mg then I flare and need to go back up to 15mg again. I'm currently down to 14mg, taking the taper really slowly, at 1mg per month but I still feel pretty rubbish. I guess working causes the flares, it's a stressful job and walking around is pretty exhausting so I feel pretty stuck. I can't get below 12.5, sometimes I can't get below 13!

[DorsetLady PMRGCAuk volunteer]

Sounds as if you need more than 15mg to get it really under control…is that the dose you return to each time, and for how long? Probably more importantly, how long were you on it initially and did it work?

Sounds as if you might need 20mg for a couple of weeks [and same time off work to give it a chance to work]. Then drop to 17.5mg for another 2 weeks, and then to 15mg..

15mg may be the most common starting dose for PMR, but it’s not enough for everyone… and certainly sounds as if you are you one. Think you need a discussion with your GP.

[Claremarie83 in reply to DorsetLady]

Oh Thankyou Dorset Lady! That sounds like it could be it!! I started at 15, which was brilliant for about a week, then it worked but not as well. I was on 15mg for about a month initially. I was told to take 15mg for 2-3 weeks in a flare then taper again, GP said to do it in 2mg tapers but I am currently doing 1mg taper monthly. I will schedule a phone call with the GP! Thankyou so much!!

[DorsetLady PMRGCAuk volunteer in reply to Claremarie83]

Your start probably explains it all…unfortunately not all doctors go by patients reactions, but by the guidelines alone. . Which is fair enough, if it works for you, but we don’t all conform to the perfect model and that’s when things go awry.

Hope you can get things sorted… and work doesn’t help.. but then you probably have no choice on that..

[Grammy80 in reply to Claremarie83]

I'm glad you came on and asked...and got some great advice from DorsetLady. Let your symptoms be your guide...go slowly and my bet is you'll feel better. Hopefully, you can get some time of work and if not, when home be kind to yourself. My best💞

[PMRpro Ambassador]

"so with GP advice I have been seesawing a bit on the prednisolone"

I assume you mean July 2024? I agree with everything DL has said - but there are some other points I'd make. Seesawing - or yoyoing - the dose is one of the worst things you can get into. It tends to make subsequent reductions increasingly difficult the more you yoyo.

With your background of Long Covid I suspect there may be a rather complicated story going on here in the background and your GP isn't seeing the big picture, neither does he know enough about the vagaries of PMR.

You are very young for PMR and you should really be referred to a specialist if only because of that. Fifteen is at the lower end of the range of starting doses - and while it worked well initially, confirming to some extent this probably is PMR, it isn't enough to really springclean the inflamed tissues and then allow you to get to a lower maintenance dose.

Repeatedly flaring at a similar dose is your body telling you that you have currently reached your destination - the lowest effective dose, the lowest dose that manages the inflammation as well as the starting dose - and have gone past it. That fits with skating on a very thin buffer zone because the underlying inflammation is still there.

I think you need at least 20mg for a month, possibly more, and to be signed off sick to give your body a chance to heal. It very much depends what your job is - but some things just don't fit with PMR, especially in the early stages while you are trying to stabilise and learn about your body, your PMR and your response to pred.

[Claremarie83 in reply to PMRpro]

Oh that's very informative and interesting! Thankyou! I have booked a telephone call with a gp to discuss. You're absolutely right about the long covid, the gp isn't sure if that's something I have as well as pmr or not. I will let the GP investigate and hopefully a slightly higher dose as you say 20mh will help! Yes July/August this year, I have only been diagnosed with this recently despite having a high sed rate which is according to the GP and indication of pmr and the steroids helping secured that diagnosis. Oh I hope they let me stay on prednisolone!! Because without it I'm a mess 🤣

[PMRpro Ambassador in reply to Claremarie83]

Had you started at 20mg in August, with a sensible taper as described in the link below, you would only now be getting to 15mg. Some people need more pred than others and the starting dose range recommended in the 2015 Recommendation is 12.5 to 25mg, 15mg is often enough until any load is added like work. And younger patients with PMR often struggle more to reduce the dose - it seems to be a bit different in nature.

rcpe.ac.uk/sites/default/fi...

The author is now a Prof in rheumatology at Luton & Dunstable and still uses the approach with a few tweaks. Because it works better than average!

[sidra1968]

Helllo, I too am stuck at 14 mg right now - I was one of those that it took 30 mg for 6 weeks to get me feeling good..and now over a year later down to 14 mg..flared at 13 mg 3 weeks ago. I did the flare protocol and now planning to stay at 14 mg another 3 weeks. Some of us just do not do well tapering. Don't worry, we will get there!

[Claremarie83 in reply to sidra1968]

I'm doing the same, staying at 14. spoke to GP who said let's get some bloods done, in the meantime stay on 14! Ugh this colder damper weather doesn't help things but hey ho, it's Friday ♥️♥️ looking forward to some rest. Yes we will get there slowly but surely 😁

[DorsetLady PMRGCAuk volunteer in reply to Claremarie83]

Weather can be a factor in most illnesses -and some enlightened Rheumies suggest no tapering during winter months.. Trouble is, not enough of them around😊