2 weeks on 15mg - what next?

[MakingDo]

Thank you all for being there and for your continued advice.

I have been on 15mg prednisolone for 2 weeks. When i was diagnosed with PMR my GP prescribed 30mg and told me to come back for blood tests in a month. However we (you guys and also a gp family friend) all agreed this was unnecessarily high and that i should try just 15 to start with and see how it goes. After a couple of days of feeling sick, emotional and generally unhappy, i have settled in to the medication (or it has settleed in to me) most of the pain has gone away, although i can feel it vaguely in the background and i have been leading a normal life. So, my questions are:

- is this enough, or should i feel no pain/aches at all and “like a new woman” at the start?

- how long should i leave it before i either start to reduce, or till i acknowledge that i need to go up to a higher dose?

- should i force my gp to see me earlier - or is another 2 weeks ok (and even then, i believe it is only going to be a phone call catch up)

- many of you mention seeing a “Rheumy” - when i do speak to the gp, should I be asking for a referral, or will this happen anyway?

Thank you....

[DorsetLady PMRGCAuk volunteer]

Hi MakingDo,

You seem to have had a good response on 15mg - not everybody gets the “miracle” cure, so why not stick at that for another 2 weeks until you have your blood tests. They should then confirm if it is working..although with any symptoms, or preferably lack of them. If you feel worse in the meantime, then up to 17.5mg or even 20mg.

“I have been leading a normal life” may give you the answer about still feeling it vaguely in the background. The Pred may be controlling the inflammation caused by the PMR, but it’s doing nothing for the illness itself. You still have that, and therefore your normal life may have to be amended slightly. So ease off the throttle for a few days and see if that makes a difference - you don’t have to stop living, but just take it down a notch,and learn to pace yourself, with a sit down for 10mins in between jobs!

If you feel your GP can manage your PMR (although starting you at 30mg might suggest he can’t) and you don’t have specific problems you may not need to see a Rheumy - not everybody does. If you’re not happy with GP then ask for a referral, but it will probably be a few months before you get an appointment.

As for future reductions, then 2.5mg is a recognised drop, but I would suggest 1mg per month - provided NO return of symptoms.

[MakingDo in reply to DorsetLady]

Thank you so much for your advice and re-assurance. I will stick with it - and sit down

[Soraya_PMR]

If your GP was happy to leave you at 30 for 4 weeks, then no problem sticking at 15 for another 2 weeks until blood tests. You might find that the additional 2 weeks clear out the remnants of pains, providing you do your bit as well (R&R)

I started at 20, 3 hour relief, then after 4 days doc dropped me to 15, it all came creeping back. Back up to 20, and after 3 (or was it 4?) weeks I felt like I could take on the world! Never felt quite that good since, but that’s mainly due to doctors trying to reduce me too fast I think.

I was referred to a rheum as I was ‘atypical’ (under 60, no raised blood markers) and GP wasn’t convinced it was PMR. Consultant confirmed PMR. I think there are very many of us described as ‘atypical’, eventually the penny may drop! Maybe we’re not so atypical after all! If you have markers to guide and are the ‘correct’ (haha!) age group, then GP should be able to cope.

[MakingDo in reply to Soraya_PMR]

I am 55 so maybe statistically less typical but I have never had much respect for statistics.... Thank you for your advice and re-assurance

[PMRpro Ambassador in reply to MakingDo]

"over 50" is the official guide. It doesn't mean it doesn't happen in under 50s but unfortunately too many doctors don't understand statistics...

[Soraya_PMR in reply to MakingDo]

I was 56 at the outset. Guidelines used to say ‘over 60’. Lots under 60 obviously forced that down to ‘over 50’. Watch this space.......’over 45’ coming soon? We all age at different rates, how can a simple number be so meaningful?

[PMRpro Ambassador in reply to Soraya_PMR]

The patient members of the guidelines committee did try very hard to get it lower than 50 - but were relieved that at least it was lowered...

Really the problem is that they don't make it clear that younger patients may be found - just like they don't make it clear that tapering is a very individual thing. They just mention it in passing and don't emphasise it enough.

[Soraya_PMR in reply to PMRpro]

I’m sure members tried very hard.

It seems to me that with younger patients, docs try and twist another ‘disease’ to fit, rather than thinking ‘It looks like PMR, she walks like PMR, by golly I think it’s PMR!”

Funny how obsessed some docs get with SOME parts of guidelines, and manage to overlook others.

[PMRpro Ambassador in reply to Soraya_PMR]

Absolutely - cherry picking comes to mind...

[CT-5012]

So there you have it, advice from “auntie “ best advice you can get. 🙂 sitting down is a valid hobby for us, we are ill! 😨 Rest is the important thing even if the pred is making you think you are the Duracell bunny 🐇 All good wishes on your journey it isn’t always easy or straightforward, all of us are somewhere on the road, or have arrived, lots of information and support. 🙂

[MakingDo in reply to CT-5012]

Thank you

[PMRpro Ambassador]

Sounds a pretty satisfactory result to me - if you are living normally with just minimal aches after 2 weeks that sounds good. I'd say at least another 2 weeks at 15mg, blood test and reassess. They often say 4-6 weeks on the starting dose and then reduce slowly - that means 2.5mg max, not 5mg at a time! 1mg is even better.

Maybe this is a GP we can train easily???? And sometimes a rheumy referral is not entirely without its pitfalls! Eventually I did find a GP in the practice who had an idea what she was doing - but in the meantime the rheumy obviously felt it was beneath him to diagnose and manage PMR. He wanted it to be an inflammatory arthritis (despite all evidence to the contrary and a less than 6 hour magical response to 15mg) and put me on sulphasalazine with all that entailed with monitoring and avoiding the sun (I was about to move to Italy).

[MakingDo in reply to PMRpro]

Well i have yet to discover how she will react when i tell her that I have taken your advice over hers but i’m sure she’ll get over it. Thank you - i will stick with it

[DorsetLady PMRGCAuk volunteer in reply to MakingDo]

Ahh...well, break it to her gently. Hopefully if she sees you are managing okay she won’t get too stroppy!