How should you feel before tapering....100% Pain Free?

[paskymom]

Hello all....Im new here and new to PMR. I am a 66 year female from southern Alberta, Canada. More info is my profile. I have been following and searching for any info. regarding this disease. Never heard of it until it hit me hard! Was feeling pretty good up until then. Was about a month in with pain in right arm...got steroid shot in it....but moved to other arm and hips by mid Jan. I was diagnosed Jan. 26, 2021 and started 25 mg. of pred. for a week. Then down to 20mg the last couple of weeks and that is where I am currently at right now. My Dr. is hoping (depending on blood work and how I'm feeling) to get me down to 15mg next week. I still have bit of pain/stiffness first thing in morn.---nothing really bad but its there. Take my pred. and usually pretty good in a couple of hours. Did have abit of a flare on Tues. Took a little longer to get moving that day. I have been resting quite bit since then and feel pretty good....I think I did bit too much the couple days before and probably paid for it. Sure doesn't take much!!!! I was just wondering how you should be feeling when you taper....should you be 100% pain/stiff free before you move on?? Any advice or comments would be so appreciated. So nice to communicate with you all. Thanks in advance!

[PMRpro Ambassador]

Hi and welcome.

Whatever the best was you achieved with the starting dose is your guide - you are aiming to find the lowest dose that will give the same result. You should never feel worse at the end of a taper step than you did at the start of it. Some people do manage pain-free, others never manage that. As you've found out - you have to do your part too and not overdo it.

I would suggest that you try to persuade your doctor to go via 17.5mg on the way to 15mg. A basic rule is that any step down in dose shouldn't be more than 10% of the current dose for comfort and to reduce the risk of missing the dose you are looking for. This isn't a race, at least, not the one the hare might have won! Tortoises rule ...

Others will be along later - but I fear I need to head for bed here in mainland Europe!

[paskymom in reply to PMRpro]

Thank you....I will suggest that to her.

[DorsetLady PMRGCAuk volunteer]

You should be as pain free as possible - if you’re not, then a reduction in medication is likely to make symptoms increase. Have to say I don’t like the idea of your doctor wanting you to reduce from 20mg to 15mg next week. Too big a reduction - equivalent to 25% of existing dose - whereas no more than 10% is recommended.

You might need to have a look at this - healthunlocked.com/pmrgcauk...

[paskymom in reply to DorsetLady]

Thanks for the advise....will for sure use it.

[Charlie1boy]

Hi and welcome to this forum.Sorry to learn you have been diagnosed with PMR. I am six years in with this condition, so have just a little experience of it. In my view you have received excellent advice. I followed advice from the forum from the outset notwithstanding that I have a very good GP, and it has worked well for me.

You will need lots and lots of patience to manage PMR, and lots of tlc. If you do try to do too much, the PMR, which has a mind of its own, will come back to bite!

Best of luck

Paddy

[Harwen]

Hi thereI am no expert, but I find splitting the dose - ⅔ in the morning and ⅓ before I go to bed - gets rid of the morning pain/stiffness. If I take the whole dose at one time, the effect of the Pred doesn't last for a full 24 hours.

All the best

[Knitwit2020]

Hi Paskymom...nice to hear from a fellow Canuck....you will find this site very helpful ..I was dx in June ..20mg prednisone..remained there for 1 full month then started tapering .Never dropped more than 10% at a time..followed the DSNS (dead slow near stop) method. Dorset Lady was so kind in providing me with her tapering schedule plan which works beautifully..I've only had one set back (flare) at 4. 5mg which was controlled by increasing to 9mg for 5 days then dropped back to 5mg and tried again...currently at 4.5 mg. seems to be working .With DL's method I will take 5 weeks to make the next taper...slow and steady. My GP is supportive of this method. Wishing you well on this journey and please never hesitate to put forward quedtions to this group..they've been so helpul to so many newbies..me included..take care, stay well..Knitwit2020 ( Southern Ontario )

[bussell]

Hi paskymom. I am recently diagnosed too (6 Jan 21) and like Harwen find one dose does not take me through. My GP said play around to find the best solution, and following the suggestion of several of our friends on this wonderful site, now take 20mg at around 2am with a little piece of cheese. Who would ever have come up with that all by themselves! And the other 7.5mg with breakfast. It works for me and stops that 5am stiffness and pain setting in. Really I don't sleep well at all and anyway need to get up for the bathroom in the early hours, so 2 am has not proved to be too much of a problem, and is worth it. Good luck!

[nuigini]

Hello there fellow Albertan. Welcome to the best source of information on PMR you will find anywhere! It's been a lifeline for me for the last 7 years. Yes, I've had it that long!

You've already received a lot of good advice. However, I had a read of your profile and suggest that you may already have reduced too quickly. Your on-going symptoms may also be indicative of too rapid a reduction. Once diagnosed, I believe the recommendation is to remain at the starting dose for 2 weeks to a month and then reduce by no more than 10%. If symptoms return and continue to worsen, going back to the original dose may be necessary.

Unfortunately, based on my experience with many doctors (I had to rely on rotating locum physicians while living in a small remote town in the NWT for years), I have to say that unlike the UK, there is very little current knowledge of PMR in Canada. Even the rheumatologist I was referred to when we moved to Alberta was unaware of current research on diagnosis and treatment and wasn't interested in hearing any of it.

Like you, I'm one of the few that had/have raised CPR levels on diagnosis and now with flares. A CPR reading of 10 is a sure sign and confirmation of a flare for me. I would say that your reading is still pretty high.

Come back to this site when you have any doubts or questions. The support is amazing.

[bussell]

PS Sorry, that 2am dose should be 10mg, not 20. Addle brain. Also just reducing this week from 20mg to 17.5. So far so good, but much activity (laundry etc) and I crash for an hour or two. All part of the new territory I fear!

[Arflane97G]

I was never completely pain free but 80% felt pretty good. I followed advice given on this forum not to reduce dosage unless you felt much the same as you did on the previous dose. I would generally have a week or so of feeling tired and stiff after a reduction but was always ok by the end of the month. Once I got to 10 mg I tapered 1 mg a month and then when I got to 3 I tapered by 0.5 mg a month, best wishes