New to PMR and a little ignorant!

[Cyprusdog2018]

Hello everybody and thank you for this forum and the wonderful advice given. I was diagnosed 5 weeks ago and prescribed 15mg Prednisolone. This wasn’t enough to relieve the pain so was increased to 20mg. My GP has advised that I reduce by 5mg to 15mg starting this coming Monday. I’m concerned, having read a lot on this forum, that this is too much. Please could one of the experts advise me as to what they think I should do - give me an idea of how much I should reduce by. Thank you in anticipation!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome.

Firstly, has the 20mg worked? If so, good, and yes the drop from that to 15mg maybe we’ll be too much…usual recommendation is 20-17.5-15mg. ..and even that is too much sometimes.

If it were me I’d be inclined to go to 17.5mg initially, you’ll know after a week or so if that’s okay….do you have another date to see doctor? If it’s in a month or so, you could try 17.5mg for 2weeks, then 15mg for next 2 weeks…and then you will have fulfilled his request…

Although 3-4 weeks at each dose is preferable…then you’re really sure it’s enough before you taper again.

Might like to have a look at this - healthunlocked.com/pmrgcauk...

[Cyprusdog2018 in reply to DorsetLady]

Thank you for replying so quickly! The doctor is calling me on 18th October, 1 week after reducing the dose. I’m torn between following her advice and the advice given on this forum - I have more faith in you and the other experts, and I therefore I think I’ll go along with what you advise. 20mg has definitely worked, I’m more or less pain free.My biggest problem is fatigue - it’s crippling!

[DorsetLady PMRGCAuk volunteer in reply to Cyprusdog2018]

Fatigue, yes…..both from the underlying illness (mainly) and the meds…..but you can help yourself a little - have a read of this posts with links…if you understand why you are getting it, you may be able to reduce it enough to be manageable -

healthunlocked.com/pmrgcauk......

[PMRpro Ambassador]

If 15mg wasn't enough a few weeks ago, I'd be doubtful it is enough now but you can try - at that stage I managed a drop from 15 to 10 without even blinking but 15mg had been amazing for symptom relief.

The fatigue is the underlying disease - probably not so much the pred, although some people do find that sort of dose gives them loads of energy which is a false friend as then they try to do too much. Pred isn't a licence to go back to normal activity! It's never happened to me - sometimes I wish

Otherwise - I'd say the same as DL.

[Cyprusdog2018]

Thank you so much! I’ve just been talking to a friend who put me in touch with this forum, and she suggested I try 17.5mg. I think I’d feel happier doing that, my gut feeling is that a drop of 5mg would be too much! I’m desperate to get the steroid intake right down but I know it’s wrong to do too much too fast.Thank you again for your advice.

[PMRpro Ambassador in reply to Cyprusdog2018]

Doing 17.5 that works will be better than 15mg that doesn't - it just means going back and starting over again. And that wastes time. Slow and steady is not only more comfortable, it is frequently quicker.

[cycli]

welcome here Cyprusdog...best advice available. Good luck with the reduction and nothing to add to PMR pro or DL. Hope you eventually get free of it.

[Cyprusdog2018 in reply to cycli]

Thank you very much! I’m so grateful for all the advice given, one can feel very lonely but with all you wonderful people, I feel comforted!

[piglette]

My rheumy got me to drop from 20mg to 15mg and it was disastrous. I then went to 17.5mg and it was fine. Some people can take the 5mg drop but precious flowers like myself cannot!

[Cyprusdog2018 in reply to piglette]

Thank you! I’ve made up my mind to drop to 17.5, that seems to be the sensible way to go. I’d much rather take it slowly than end up back the way I started. Thanks for your advice!

[piglette in reply to Cyprusdog2018]

Good move.

[Meggsy]

Welcome Cyprusdog - a very good book to read is Polymyalgia Rheumatica and Giant Cell Arteritis - a survival guide by Kate Gilbert.

[Cyprusdog2018 in reply to Meggsy]

Thank you Meggsy, I’ll order it!

[seamaid in reply to Cyprusdog2018]

an excellent book, and very easy reading.

[Lochy]

Welcome. I followed my doctors advice tapering from 20mg over about three months and got to around 11mg when it all went wrong. A few months later I was back at 20mg and started all over again. By that time my lifesaver was finding my local support group where someone told me about this wonderful site and I’ve never looked back. I still have PMR and it’s been a very rocky road for me but now I have enough information to advocate for myself when I see my GP (he now acknowledges I know more than him about PMR!) and my rheumatologist. The best advice to follow is to take it slowly, very slowly! Good luck you’ve done well to find this place so early on.

[Cyprusdog2018 in reply to Lochy]

Thank you Lochy! I’ve decided to follow the advice of the experts in this group and people like yourself who’ve already been down the road. I’m at the moment on 20mg and are due to reduce tomorrow. The GP advised 15mg but I’m ignoring that and going down to 17.5. I know it’s all trial and error as we’re all different, but I’d rather go slowly.Thank you again, it’s great to know I’m not on my own!

[Call_Me_Wally]

Welcome Cyprusdong2018.

I'd like to offer a different perspective (I know it won't be the most popular), but first I want to acknowledge that you've been given some solid advice, and your decision to follow your own intuition is probably the best, which is to only taper down to 17.5mg.

From what you've posted, I can't see anything your GP has done that would raise any red flags, or make me think something doesn't make sense. Add to the fact that your GP wants to follow-up with you next week is also a good sign.

Most people do start on 15mg for PMR, and if that doesn't work, they go up. I think the logic of having you go down to 15mg again, is that 20mg was enough to clear out the built up inflammation. Therefore, dropping down to 15mg doesn't seem unreasonable.

But honestly, the point of my post isn't about the level of tapering, it's about building a good solid trustworthy relationship with your GP, because that's what you're going to need on this journey. You might want to consider giving your GP the benefit of the doubt. If you did taper to 15mg and had a flare, I'm sure a phone call to let your GP know would remedy things as your GP knows what happen last time - you always have that option.

Finally, some advice for your phone call next week. You might want to start thinking about what questions you need to ask. For example, what's the best way for you to handle flare-ups (is your GP OK with self medicating, or call them first). Consider the tapering schedule the GP's going to recommend - will it agree with how you see things going forward (ie. is it too aggressive).

Hope things work out well for you in the next couple of weeks.

[Cyprusdog2018 in reply to Call_Me_Wally]

Hello Call_Me_Wally,Thank you for your advice. It’s a little different to the other advice I’ve had from this forum, but I hear what you’re saying. I’ve decided to reduce to 17mg for a week and if I feel no ill effects I shall reduce further to 15mg. Whatever happens I shall adjust the dose accordingly. I have a good relationship with my GP but I think PMR is a disease which affects people differently and I really don’t believe ‘one size fits all’!

Hopefully I’ve got it right but time will tell. Thank you again!