best tapering advice

[Thiago1396]

I was diagnosed April 2023 PMR, after 2.5 months of severe pain in shoulders, back of neck and buttocks, then hands and wrists. I was started on 15mg which helped a lot, but never cleared up the inflammatory pain. After a month doctor advised 2 weeks at 12.5 followed by 2 weeks at 10.

after the first 3/4 days my pain increased so I went back to 15mg (my decision). Still experiencing some pain in my shoulders daily, after around 1 month like this, and reading on here about the need to eliminate the inflammatory pain prior to tapering, I increased my dose to 20mg (my decision) last week. After 5/6 days I am pain free.

I want to stay like this of course. 🙏 So I need best tapering advice, to be prepared for my doctors tel consult later today.

I am enjoying my pain free period so much, after getting PMR in February this year.

[PMRpro Ambassador]

I would say you need at least a couple of weeks at 20mg so I hope your GP is feeling kind! Then try 17.5 for at least 3 weeks. Some people just need more to get it all under control to start with and the 2015 Recommendations cover that - quote it to your GP. It was in BMJ so he should be aware of it (she said hopefully!)

ard.bmj.com/content/74/10/1799

"3, The panel conditionally recommends using the minimum effective GC dose within a range of 12.5–25 mg prednisone equivalent daily as the initial treatment of PMR. A higher initial prednisone dose within this range may be considered in patients with a high risk of relapse and low risk of adverse events, whereas in patients with relevant comorbidities (eg, diabetes, osteoporosis, glaucoma, etc) and other risk factors for GC-related side effects, a lower dose may be preferred. The panel discourages conditionally the use of initial doses ≤7.5 mg/day and strongly recommends against the use of initial doses >30 mg/day.

4, The panel strongly recommends individualising dose tapering schedules, predicated to regular monitoring of patient disease activity, laboratory markers and adverse events."

And a more recent publication empahsises the need for treating the symptoms, not the textbook:

ard.bmj.com/content/early/2...

Hopefully your GP will understand the significance of getting you symptom-free before tapering - unfortunately many don't and their fear of pred overwhelms sensible management.

[Thiago1396 in reply to PMRpro]

excellent tel consultation with my doctor yesterday, some info & advice in these replies her helped enormously. I got a green light for my 20mg daily, and my desired tortoise approach to tapering. Doctor expressed concerns about risks with steroids on my health, cardio, weight, diabetes, psychosis, stomach etc. satisfied with my monitoring and actions on this. Felt a shared responsibility for my PMR and I quoted the excellent links to articles in the replies to my question on tapering, thank you. I have found this place so very helpful in so many ways, in coping with my PMR, especially empowering me to make some very important decisions going forward dealing with my PMR in a way I feel reasonably comfortable with. I am even more convinced that a problem shared is a problem halved, than ever before.

My most sincere thanks for all the advice, information and support many of you have given me, at this beginning of my PMR journey.

[DorsetLady PMRGCAuk volunteer in reply to Thiago1396]

Good to hear -and although doctors do need to highlight the risks of long term Pred, I do think many of them overestimate them.

I was on Pred for 4 & half years -very high at beginning due to GCA and sight loss -and the only side effect I had was weight gain -but that soon went as I got lower and finally came off them.

Now almost 7years since last Pred my weight is lower than it was pre GCA -and I haven’t fallen to pieces..

I do have osteoarthritis (familial and way before GCA) -so have had joints replaced -but nothing to do with Pred!

[PMRpro Ambassador in reply to Thiago1396]

I've been on pred for 14 years - no problems, no diabetes, no osteoporosis, overweight but I gained a lot of weight due to PMR and lost a lot of it while on highish dose pred. Managed carefully it isn't half as bad as some doctors make out.

[Thiago1396 in reply to PMRpro]

You have made, and continue to make my PMR journey more tolerable and understandable.

Sincere Thanks

[Charlie1boy]

What PMRpro has written to you is almost exactly what my GP did with me when I was first diagnosed with pmr.

Get the inflammation under control first, then you can consider a tapering plan, which may need to be unique to you. Above all else, don’t try to reduce if you are still experiencing any pain symptoms , and try to follow the golden rule of not tapering by more than 10% of your current dose. In general, I stayed at the same dose for a minimum of four weeks before even contemplating a reduction.

As you have probably learned by now, pmr requires lots of patience, and then more patience again! Lastly, try not to do too much; you will need to give yourself loads of tlc.

Good luck.

[Thiago1396 in reply to Charlie1boy]

You are so right in your reply 👍

[piglette]

It sounds like you are more knowledgable than your doctor! Well done for becoming pain free. I have noticed males tend to do better starting at 20mg.

[Ozziedays]

Like you, I’d had pain, sometimes severe, for over 2 months when I was diagnosed. My GP started me on 25mg and commenced tapering (2.5mg steps) about 5-6 weeks later when I was pain free. I started to see a rheumatologist about 2 months after diagnosis and she managed things from that point on. Tapering went to 1mg steps from 10mg. I had a couple of raised blood markers around 4-5mg and after the second occurrence and reset of tapering, my rheumatologist added methotrexate to my medication, as well as further slowing down tapering to 0.5mg every 4 weeks. I got to zero pred in November 2022 (23 months since diagnosis) and have a plan to cease methotrexate by early next year, subject of course to no further symptoms or issues.

I didn’t discover this website till I was nearly off pred and had very little information about the disease, prednisolone, tapering etc. I guess I was lucky to have a GP who knew what he was doing from the first consultation and had quick access to rheumatology (I was in Australia when this all happened but returned to UK earlier this year).

[Ps99s]

you need to be pain free at each level befoe you taper . Each level should be fore 1. Month then taper by 2.5 mg for the next month and so on until you reach 10mg then your taper is 1 mg down for a month each until at 5mg then it may be fown by 1 mg each month or you may have to go down by .5 mg .

I had first onset in 2019 and tapered by this formula til off in2021. Had a flare in may 2021 then back up to 25 mg and since tapered now at 6mg.

Very important to be pain free at each level ( opinion of 3 rheumatologists I have been followed by here in US.

[paulus65]

Looks like you've already discovered that you're better than the doc at managing this condition. Trick is to taper at your own pace, when it feels right for you (assuming your surgery will give repeat pred prescriptions)