Update PMR 2 months since diagnosis

[TillyBrown]

Hi everyone, this forum has been a lifeline for me - thank you. It's given me the knowledge to ask the right questions and feel confident in questioning and working out a plan tailored for me.

This is quite a long read, but thought it might be of interest to people at the same stage as me. The main message being in I am in an infinitely better place than for the few months leading up to diagnosis. Since my initial post, I am coming to terms with the diagnosis. I delayed my first taper (initial dose 15mg, 6 weeks instead of 3 following advice from the forum) and was able to enjoy my family holiday in the Lakes! I had my first rheumatology appointment, I said I didn't want to take AA unless absolutely needed; they agreed to a bone scan (which is next week). The appointment was half an hour of talking, not sure it was that useful but I did ask a lot of questions and he gave me a plan (which was different to the GP plan!). I reduced to 13mg just over 2 weeks ago, felt off colour for a week or so, and had one very achy night. I'm still generally achy (upper quads, shoulders, lower back), and wake up at 4am, though usually get back to sleep. The stiffness is manageable, if a daily presence. I've had a very stressful week due to issues around my husband's work - exhasted/headache - would I be right thinking this is stress related as my poor body can't cope well anymore? I plan to aim for 3 weeks on 13mg then drop to 11mg. Bloods this week showed normal CRP of 4 - seems good (highest was 47 pre pred), is this indicating that I should be ok to taper again soon?

I've seen a physio friend who has given me gentle exercises as I want to remain as fit as possible for whenever the PMR ends! By the way, I had some sports massages pre diagnosis which had inital benefit but may have made things worse in hindsight. I have cut down on sugar and alcohol. Thinking of having therapeutic massage - have people found that beneficial?

As with many others in theirs mid 50s, the previous active me was out walking/cycling/exercising all the time, I walk every day, max. 3-4 miles (I'm hoping you don't say this is too much - not sure I can cope mentally without my walks!). Yoga (at home) has been a life-saver for me. Prioritising self care - relaxing baths (epsom salts), good friends and a wonderful husband (who cooks too!).

For those of working age - how do you balance work and PMR? My employer has been supportive and I am on a reduced hours sick note which allows me to rest when needed (I am lucky in that I can work from home combined with some in person meetings and outside trips locally). Will things get easier or am I going to need to make adjustment for the life of my PMR?

To anyone who made it to the end of this lengthy essay - phew and well done!

[piglette]

I find swimming a good form of exercise as the water supports you.

[TillyBrown in reply to piglette]

Thanks, that's a good idea, I have a friend who does sea swimming, might give it a go (once the water warms up though!).

[PMRpro Ambassador]

Bear in mind that sports and therapeutic massage have similar effects. I have always used it, I expect to feel worse briefly after inflammatory substances are released from the muscles into the system but in the longer run it helps a lot.

[TillyBrown in reply to PMRpro]

That's interesting that both are similar, will proceed with caution and find a recommended practitioner.

[PMRpro Ambassador in reply to TillyBrown]

Both are aimed at dealing with problems with in the muscles - as opposed to simply relaxing "wellbeing" pampering.

[paulus65]

You seem to be planning your tapering weeks in advance. I think this might lead to bother in the future. I found that the trick is to reduce pred when you feel "right" - not according to the date.

[DorsetLady PMRGCAuk volunteer]

Re paulus65 comments-

As we always say - remember it’s a plan only- and can/will be altered.

We all know life gets in the way of the best laid plans of mice and men [and women].

So listen to your body not watch the calendar.

[TillyBrown in reply to DorsetLady]

Thanks for the good advice paulus65 and DorsetLady I will make sure to listen to how I am feeling and take heed before any reduction.

[PMRnewbie2017]

Hi. From experience I think a taper schedule should last 5 or 6 weeks. Then stay at the new lower dose for at least 2 weeks before continuing the downward journey. Also your CRP will be down to 4 because your Pred dose is sufficient. It doesn't mean it's ok to taper and the PMR has gone to sleep. That's why a slow taper is the way to go because if symptoms re-emerge as the weekly cumulative Pred dose reduces it's easier to judge what your "golden dose" is. I hope that makes sense. Tapering too quickly means it's easy to overshoot and runs the risk of a flare developing.

[TillyBrown in reply to PMRnewbie2017]

Valuable advice thank you PMRnewbie2017 . I still don't quite understand why the gp/Rheumatologist try to get you down from 15mg to 10mg in 2 steps pretty fast (within a few weeks), then suggest 4-8 weeks per 1mg after that. I certainly won't be rushing, as I have taken on board how important it is to minimise risk of a flare, thanks to all the good people on this forum!

[DorsetLady PMRGCAuk volunteer in reply to TillyBrown]

PMRnewbie2017 . I still don't quite understand why the gp/Rheumatologist try to get you down from 15mg to 10mg in 2 steps pretty fast (within a few weeks), then suggest 4-8 weeks per 1mg after that

Because that’s what the guidelines say -

5) We recommend initiation of low-dose steroid therapy with gradually tailored tapering in straightforward PMR (B).

In the absence of GCA, urgent steroid therapy is not indicated before the clinical evaluation is complete.

The suggested regimen is: However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

Daily prednisolone 15 mg for 3 weeks

Then 12.5 mg for 3 weeks

Then 10 mg for 4–6 weeks

Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.)

Doesn’t necessarily means it works though…

[PMRpro Ambassador in reply to TillyBrown]

They are concerned about the effects of relatively high doses of pred - not that 10-15mg is high. But they start with a dose that they expect to be more than will be needed ongoing and have it fixed in their minds that everyone will need under 10mg ongoing. So they rush people down to 10mg without stopping to think about lots of people having accumulated inflammation that needs to be "springcleaned" out before they can taper to find the amount needed for each day's new batch of inflammation. I think they over-egg the potential risks of pred - I'm not saying there aren't any, there are, but with the right advice it is possible to minimise them and avoid the problem they create with their fast tapering of overshooting the dose they need at any point and then needing to increase and risking getting into a yoyo pattern.