PMR - Pred doses and best timings

[BrianL7C]

As someone recently diagnosed with PMR (although I'm still not full convinced it has been completely confirmed) I am struggling with my day to day differences in the symptoms. I started on 15g a day Preds and have just been advised to go to 20g as things were not changing much. I can have days, and nights, completely symptom free and then suddenly be knocked back with all the aches and pains returning. I currently take the medication, as advised with breakfast. Around 11 I start to feel the aches and pains easing and by mid afternoon up to a reasonable walk or some light gardening. However, just recently the pains start to come back, especially in my legs around 20h and then continue with hip and shoulder pains throughout the night. Obviously this is affecting my sleep quality and it is clear a good nights sleep is essential for how I feel the next day. Having been extremely fit and active all my life (now 69) I'm finding this situation frustrating and depressing and don't fell up to planning anything in the future. Current Covid situations means I have not yet "seen" any medical practitioner (only phone calls with different doctors) and my blood tests continue without any definite conclusions. I'm interested to hear from those with more experience of living with PMR how they regulate the timings for taking Pred and other advice on controlling what they do on the "good days" so it does not result in a debilitating reaction?

[SnazzyD]

If you’re anything like me, “light gardening” means hours with just a trowel as opposed to a spade. That won’t do for now, in fact it may mean very little at all. It is trial and error to find out what is too much. Watch what you do and if you get kickback any time within the following 24-48 hours, don’t do it again. Both Pred and PMR can make the musculoskeletal system more susceptible to strain. Also, the energy on good days can be false due to the Pred so it is easy to lurch from boom to bust. It is really important to cut down on things in the early days and if you are going up in dose (15mg is not always enough) you want to know it is doing so, not because you are burning the candle at both ends. 20mg May make you feel more buzzy or floppier or both. You may also want to eat more, so get on that very low carb diet now if you haven’t already done so.

Diagnosis is often an educated guess, especially for those whose inflammatory markers are not particularly affected. History and response to Pred is often all there is to go on. This can feel very unsatisfactory for a condition that is so life changing. Many many of us were fit and active too.

You may benefit from splitting your dose into two parts over 24 hours and I’m sure you’ll get replies from those who know more about it. You could, in the meantime, search for splitting Pred dose at the top of the screen.

[DorsetLady PMRGCAuk volunteer]

As you joined end of July - was that when you were diagnosed? or just looking for info?

If diagnosed and started on Pred - a month in one might expect a better result - unless as suggest 15mg is not enough for you.

Have you started 20mg? if not, try it for a week or so, and see if things improve.

If you do consider splitting (but try 20mg first) usual recommendation is approx 2/3rd am; 1/3rd pm.

"Good" days should be appreciated, but not used to do too much, or that inevitably leads to a bad day.

Why are you not convinced it is PMR?

Have a read of this - and please read the links regarding pacing -healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Have you tried keeping a detailed diary of activities and symptoms? Are your bad days after a good day where you went and did all the things you wanted to catch up on having been unable to do them? It isn't the role of pred to facilitate that - that is something YOU have to take control of and pace and rest appropriately:

healthunlocked.com/pmrgcauk......

I know that this is in DL's article but I'm adding it here for anyone just skimming through - go and meet the gorilla we must live with!

Your muscles and other soft tissues are still being attacked by the underlying autoimmune disorder that creates the inflammation - a similar effect to that of flu. Would you expect to be doing "a bit of light gardening" if you had flu? DOMS, Delayed Onset Muscle Soreness, develops very easily when you have PMR. Your muscles are unable to warn you you are approaching your limits - which are not set where they were pre-PMR - and you find out you did too much a bit late, once the muscles are damaged and sore.

[Viv54 in reply to PMRpro]

Oh dear ! This sounds like me, felt great for the first time in ages on Saturday. Went for a nice walk came home feeling good.Did a bit in the garden , Did jobs around the house that had been bugging me for ages ! . In the evening started to feel extra tired, didnt think to much about it. Went to bed ,next morning woke really early stiff all over chronic back pain ! What a hard way to learn a lesson ! Hence from now on i will pace myself ! It really is not worth it, i payed the price for a couple of days after !

[DorsetLady PMRGCAuk volunteer in reply to Viv54]

We’ve all done it I can assure you - the lesson is to learn from it! Not always easy 😊

[BrianL7C]

Thanks for the very educational and encouraging replies. I start to see my issues are mostly the result of feeling better, but not actually being better. Very hard for someone like me whose only previous contacts with medical experts has been appendicitis and sports injuries (some serious as fast moving vehicles were part of them!) All based around the "condition", diagnosis, treatment and recovery process and me the impatient, patient! So, from what I am now reading, I have to rein back and understand PMR more. How many people have been successful in the processing the treatment via Pred, AA, VitD tabs, Omeprazole and returned to a normal life, albeit with a better understanding of the warning signs when things change?

[PMRpro Ambassador in reply to BrianL7C]

Plenty - but there aren't that many here, they are all away getting on with life! The median duration of PMR is just under 6 years - that means half are off pred altogether in that time. Many of the rest of us get a low dose and have a perfectly normal life with a few lifestyle changes.

I just told the story of Michdonn on another thread. At Easter one year he was on 30mg pred after a flare brought on by over-enthusiastic tapering by his rheumy and his wife had to take him to appointments in a wheelchair. He could walk to the gate and back, no further, He started using the DSNS approach to tapering and built up his exercise (walking) very slowly - adding a minute out and back each alternate day until he found his limit and then training at that level for a couple of weeks before increasing again. The following winter he was back to skiing, teaching small children and the following summer to ride his bike up and down the local mountains in New Mexico. Mich is in his 80s - and I think he is now off pred altogether.

[DorsetLady PMRGCAuk volunteer in reply to BrianL7C]

I am living proof you can/do get through this! But you have to -

Accept life will be different during your illness - not put on hold, but certainly spent in the slower lane (appropriately maybe😳) and

Learn to manage your illness. That doesn’t mean giving it to it, just adjust things, a bit more forward planning and recognising you aren’t as robust as you were - and you might have to say “no” sometimes!

[Verwood]

Hi Brian

I started on 15mg but still had some pain in the arms and hips. My doctor increased the Preds to 20mg, this improved things for me. In the early days I did over do things, going back to normal level of activity and exercise and had a return of shoulder and hip pain. Total rest for a week did the the job.

I started going for a daily bike ride for 1 hour, slow at first but now 3 months later I am riding 15km in an hour through the country park, but keeping off the hard parts of the bike trails.

Slow increase in exercise has work best for me.

My doctor advised that I had to be a mimimium of 5 days without any symptoms before I start to tapper down. When I start on 20 mg I notice that some days were better then others for the first couple of weeks. Progressively the better day became permanent, so after just over a month I reduce to 17.5mg.

Again I started to having some minor pains in the early morning, waking me up, so after asking our friends here for advise, I split my daily dosage to 7.5 mg morning 10:30 am and 10 mg 1:00 am.

I am now down to 12.5 mg, note, I have felt the return of minor pains for the first few days when I reduce but after a week these have always subsided so far, I put this down to withdrawal symptoms.

I hope my experience helps

[Pippah45]

I think a huge number of us were very active before this thing hit so we understand the frustrations! However learning to pace yourself is crucial to recovery! Going backwards is no fun at all. Good luck.

[NickWarwick]

Hi Brian. Similar sorts of issues for me.

Diagnosed (sort of) about two months ago. Seeing rheumy for the second time tomorrow for a final verdict. Started on 15 mg pred (at breakfast as required) which helped a lot but I was still waking up with sore shoulders, one hip and one knee in the morning.

Took a punt on splitting the pred dose after reading something on this forum. So 10mg at bedtime around 11.00 ish and 5mg in the morning about 7.30 which seems to work well for me. Always wake up at 4.00 am with a sense that my shoulders are a bit sore but then back to sleep and feel ok in the morning and the rest of the day in truth.

Haven't discussed that with the GP who you can only speak to on the phone at the moment but then only after getting past the receptionist stasi . Not really interested in their views anyway as i am feeling a lot better.

What i am interested in is a strategy for getting off the steroids. The initial rheumy suggestion to my GP and copied in to me is to reduce by 2.5mg per month every month. I am going to debate the merits of that with her tomorrow evening as it seems to be out of kilter with the perceived wisdom in this forum.

Then again i want to off meds asap of course.

One question you could ponder team. If I am dropping off the pred dose, do I reduce the evening figure or the morning. I am guessing the evening ?

On exercise. I have been playing some golf and carrying half a set for 9 or sometimes 13 holes. Seems to be ok on the day but i sense that it causes some slight additional twinges about 24-36 hours later. Might be normal, Might not. I dont know. Just getting used to things myself.

Hope that helps

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Many “official” tapers quote 15-12.5-10mg then 1mg every 4 or 8 weeks - depending on patient agreement!

The 2.5mg tapers are achievable by some, but not all....and if you follow the “not more than 10% of current dose” mantra much quoted on here, you can see it’s too much. You might like to discuss that with GP.

As for which dose to reduce, if you can persuade GP that 1mg is the way you’d like to go - then just a suggestion, maybe try alternating - 1mg off morning dose first reduction, 1mg off evening dose second month etc....

As for the reaction to golf - could be just a tad too much activity (PMR) or DOMS (Delayed Onset Muscle Symptoms). You might be better off with a trolley rather than carrying bag/clubs.

[NickWarwick in reply to DorsetLady]

Thanks DL

Looking again she did suggest a reduction to 12.5mg after one month (which i have ignored until i see her tomorrow) then a reduction to 10mg after another month, followed by 1mg reductions every month. So that sounds like the standard advice.

I will see what she has to say tomorrow but if i read these threads correctly, the problem is that if you reduce to quickly then you might well go back to a worse position than at the outset. Would that be a reasonable summary ?

Difficult to know whether to stick or twist then n'est ce pas ?

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Absolutely spot on! Pity medics don’t “get” that. Sorry some medics, my GPs (plural) never hassled me.

1st on all consensus backed by blood test results - mind you she had undiagnosed me for 18 months so was ultra cautious, and 2nd one much more experienced and left me to do my own thing (with advice from him if required).

[PMRpro Ambassador in reply to NickWarwick]

The reductions aren't necessarily the problem - it is ignoring the signs of a flare for too long instead of pouncing on it that leads to trouble.

[Fireleigh]

Moderating what you do on good days is very difficult. Many of us have been fit and active so forcing ourselves to do less on a good day goes against our nature. However we must hold back otherwise we feel doubly worse on following days. I found it nigh on impossible until I itemised chores/activities and did a maximum of two per day. You have to remind yourself you’re ill and take a rest between activities. Even “socialising” is an activity. Good luck with it!

[Tilian]

Hi, like you I started on 15mg about 5 weeks ago, they started to work on first few days, but then was only getting a few hours pain free, some mornings I could hardly get out of my bed as pain in arms and shoulders was so bad, I was told to increase to 20mg, same again ok couple of days then pain back again, I was then told to try splitting the dose, I take 10mg about 8am and 10mg about 8pm, have been (almost) pain free for nearly a week now, so splitting seems to be helping me, maybe worth a try

[PMRpro Ambassador in reply to Tilian]

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