Newbie PMR here in the US with tapering questions

[FLSurfing_Dad]

I’m a 59yr old active surfer, weightlifting active guy who works in physical therapy, sports medicine and industrial injury prevention. In December I was diagnosed with PMR after I met with my GP and I started prednisone dose pack and I flared on the last day of tapering on 60mg-10mg over 12days and again with another pack. I have to say had I not figured this out myself through medical research and your help, I would be lost. The science is there but the art of treatment is definitely here which in my opinion is vital in the care of patients. Thank you to each of you.

I have figured out that I’m good at 30mg/day. 10mg in the morning, 10mg afternoon and 10mg at bedtime for the past 4 days. How long do I stay at 30mg before maybe dropping to 20?

I don’t see a Rheumy ( I love that haha) till Feb 18 for my first visit. I welcome any advice on this new friend PMR and thank you again for all the sharing you have done on this site for me since I’m the first here in my small group of family and friends to have this.

Nick

[PMRpro Ambassador]

Welcome:

Point 1: the recommended starting dose for PMR is up to 25mg/day, the lowest effective dose, and ALL taken as a single dose in the morning

You then need to stay at that starting dose for 3-4 weeks before starting to taper to find the lowest effective dose, that provides the same relief as the starting dose.

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

is an outline of the right sort of approach - only fault in the paper is that they don't mention it may well take more than 2 years!!!

Point 2: reduction steps should not be more than 10% of the current dose - so 2.5mg at a time at present, not 10mg!!!

Point 3: are you still trying to do your usual exercise and activity routines? You will almost certainly have to modify them. Repetitive or sustained actions are poison in PMR, you get no warning you are overdoing it so DOMS is more severe and lasts much longer than you are used to. Most of the athletes I know who have maintained training during PMR say 70% is a good aim but you may have to start training from a low level again and there are some things that really are not advisable. or have to wait a lot longer. I skied every winter - and I had to start from a few short runs at the beginning of the season and on alternate days to allow for recovery. Our local physios are adamant about the recovery days - and they are very aware of PMR here.

This is a link to the international recommendations in PMR:

rheumatology.org/Portals/0/...

Skip the first few pages - they are about HOW they achieved consensus.

[FLSurfing_Dad in reply to PMRpro]

Thank you PMR pro,This is very good information and I will definitely dig through it. Yes, I have modified my activity in the weight room and with dropping 10-12lbs with diet changes I had to drop my weights. I retired from Ironman triathlons 10ys ago but still swim, surf and cycle and completely agree with recovery days and will continue with maintaining and not pushing activities.

I’m surprised with prednisone all in the morning which I like much better. I only have 10mg tabs but might be able to split them. Do you think I can start 25mg soon then?

[PMRpro Ambassador in reply to FLSurfing_Dad]

You can but try - bear in mind that you may get what is called steroid withdrawal rheumatism with bigger steps. It tends to start immediately you change the dose and then improve over following days, not everyone has it and for some it can take just a few days and for others longer. But the hallmark is that it improves. A flare because the dose is now too low usually takes at least a few days to appear and progressively gets worse. Don't ignore that! Go back to the previous dose and try a smaller step down. Some people can't cope with more than 1mg drops - and it is confusing because the withdrawal pain and a flare can be very similar.

Why surprised at all in one dosing? It is thought to reduce some of the adverse effects and it certainly deal with the morning pain and stiffness better for most people - though there are other tweaks to that that a few people need if the effect doesn;t last the full 24 hours to the next dose.

[FLSurfing_Dad in reply to PMRpro]

Great information on the flares/ withdrawals. I have a feeling I will be taking this slowly as that my last flare was like my first. I figured out that my old boxers fracture in my had is the first sign when it comes on usually 4-6am which makes sense with the inflammation release. I’m wondering if the dose/ half-life in the morning will cover to the morning. I’m willing to try tho. Haha.

[PMRpro Ambassador in reply to FLSurfing_Dad]

Most people do fine on 1x daily dosing. If it doesn't, often you don't need to do 12 hourly doses, taking 2/3 in the morning and the rest long enough later to carry you through to next day works well. Everyone is different and the aim is to find your personal optimum dose and dosing. And that should minmise the adverse effects as well.

[DorsetLady PMRGCAuk volunteer]

This might give you a bit more info on how PMR is more “normally” treated - PMRpro has given you specific info (so named for a very good reason) - healthunlocked.com/pmrgcauk...

[alangg]

Hi Nick,

I'm a Live Events Technician based in Devon, UK. My work is building stages, rigging lighting trusses, PA systems etc. so a fairly active job.Like you, I was 59 when diagnosed with PMR (Dec 2017) and I had a fairly 'textbook' tapering journey over 2½ years thanks to advice on this site - never more than 10% reduction, use a DSNS tapering plan over 4 weeks and stay on the new dose for at least 2 weeks before starting to taper again.

If I was aware of increased symptoms during or at the end of a taper I would go back up and then try again in a few weeks time. And if I knew that I had a period of sustained work, I would not try and taper until it had finished.

I also had a pill cutter and a selection of different strength pills (5mg, 2½mg and 1mg) so sticking to the 10% was easy using a spreadsheet to tell me how many of each pill or half pill to take each time. The whole dose at breakfast each day worked for me.

So, take it slowly; pay attention to what your body is telling you and be prepared to adjust your dose; be aware that when you get down to around 5-6mg your adrenals will need to start producing cortisol as they will have stopped while you are on high doses of pred (I think mine started ok as I didn't suffer from fatigue as some people do.)

Hopefully you will have as smooth a ride as I have but it may take you 2-3 years and possibly longer.

[FLSurfing_Dad in reply to alangg]

That is great information and ideas. I’m trying the 25mg all in the morning today and I will put a spreadsheet together to keep a record and schedule. I’m not sure if this is a side effect of prednisone but I’m gassy as can be after I take the prednisone. I haven’t had a beer or wine since this started and I can only imagine after a beer or two I would be hovering. Lol. I have taken notes from all and I’m very grateful for these tips and information on this and I hope in some way I can help others on this site.

Nick

[PMRpro Ambassador in reply to FLSurfing_Dad]

What other medication has your doctor put you on?

[FLSurfing_Dad in reply to PMRpro]

Nothing for PMR till I see my Rheumy next month. My only other meds are 5mg Cialis for prostate and 10mg Lisinopril for BP.

[PMRpro Ambassador in reply to FLSurfing_Dad]

Just wondered if the standard PPI for "stomach protection" had been added by the GP - they can cause it. Pred can cause some people to have gastritis - never been a problem for me though.

[FLSurfing_Dad in reply to PMRpro]

No, I’ve been on merdol dose pack before without any issues. I’m hoping the morning 1x dose will not gas me up by the evening. Any issues with having beer or wine with PMR? Moderation of course.

[PMRpro Ambassador in reply to FLSurfing_Dad]

As I have said before, there are a lot of us in trouble if there are!!!! I found my taste changed, went off the heavier reds but that was PMR that did it, not pred. Don't do beer - never have. Everyone is different though and some people find certain things make them flare, If you do notice problems try keeping a food diary and notice how symptoms relate to what you did, ate and the dose.

[FLSurfing_Dad in reply to PMRpro]

Gotcha, I have been eating clean and definitely will keep a log on food when I start to add back anything new like Gluten, red meat and alcohol.

[PMRpro Ambassador in reply to FLSurfing_Dad]

Gluten per se is somewhat disputable - but wheat does appear to make a difference for many. I can't eat modern commercialised wheat but I can eat spelt, kamut and rye. Of course - removing gluten also immediately removes wheat but it may be worth separating them. If you go for low carb of course it removes them all

[FLSurfing_Dad in reply to PMRpro]

That’s great information, I have noticed when I had some pasta recently it didn’t effect me which I was happy about. Now that I’m learning more and more about this it’s really not that scary but more like a gambling game with symptoms. I never thought I would know my own body more than I do now. Haha.