PMR Tapering objective

[RaisinBran]

My Rheumy wants me to be at 2-3 mg by October of this year or he will suggest other scripts to get me there. I need a plan from the experts---please. I am currently on 8mg for the past nine days and feeling great! No lethargy, neck pain or shoulder pain. As most of you are aware, I have been to zero a couple of times only to have a flare and jumped up 5mg to try and deal with it. The last flare put me back to 8mg. Any plans out there since I am so sensitive to tapering to get to 3mg by October? Thank you

[DorsetLady PMRGCAuk volunteer]

Most successful seem to be 0.5mg a time and using one of the slower tapering regimes... both of the ones we talk about most on here take about 5 weeks from start to finish

So if successful [sorry no guarantee of that -that's up to PMR not the authors of said plan] - you could be possibly be at 3.5mg or 4mg by October.

Okay it's not 2-3mg but better than nothing especially if you have no flares! Plus think Rheumy needs to realise - life has a habit of throwing a spanner in the works.. not everything goes to his plan.

[RaisinBran in reply to DorsetLady]

Thanks DL as always, sounds like a plan. 👍

[PMRpro Ambassador]

You need a rheumy who treats his patient and not an image that doesn't exist. He has seen what happens if you go below 3mg and it is the repeated failed attempts that are probably now causing the dificulties with tapering. It doesn't matter HOW you taper - nothing will get you past that "Lowest Effective Dose" which was, at one point, 3mg for you. But forcing the issue never helps.

The most likely way to succeed is very small steps and not too frequently - but that in itself means getting from 8mg to 3mg in 7 or 8 months is likely to be fraut. QOL is the aim at this stage of life and pred - and if that means a bit more pred, so what?

[RaisinBran in reply to PMRpro]

PMR Pro, Thank you! However, What would you suggest I try , that you think may be the safest way to taper to 3 by October and if indeed I develop pain along the way and can"t do it safely, then I will tell the rheumy I just cant do it and that will be that!

[PMRpro Ambassador in reply to RaisinBran]

Sorry - fresh out of crystall balls this week!!!! The way DL has suggested is the best I could suggest but neither of us can forecast how it will go. 1/2mg steps at most, Using one of the slowed tapers over several weeks. But you cannot aim for a specific dose on a specific date, you have to go slowly enough to be able to cope with the changes and then you see where you manage to get to. The pressure of "you must be at 3mg on October 10th" or whatever will just ensure you fail to get anywhere near. You can only do your best and what your body and PMR will let you. And any rheumy who tries to push you is not a good doctor.

[piglette]

Don’t try and get to the dose your rheumy wants, they do not have PMR, get to the dose that is comfortable for you.

[RaisinBran in reply to piglette]

Thanks Piglette

[Lonsdalelass]

Your rheumatologist sounds like a bit of a bully if you ask me.......

[RaisinBran in reply to Lonsdalelass]

He is!

[Zebedee44]

Did the Rheumy not give you any plan for that huge reduction? He sounds extremely negligent to me and you are destined to fail without a realistic tapering plan. Can you get a second opinion?

[RaisinBran in reply to Zebedee44]

Not easily ty

[PMRnewbie2017]

Grrrh I am so cross on your behalf. I've been at this for nearly 7 years now and it makes my blood boil with Drs who push and push us to get off Pred. I even told my newest Rheumy last month that they need to understand that piling on the pressure, added to the curve balls that life throws at us, actually contributes to our continued struggle to get of Pred as it can precipitate a flare. He actually agreed but that doesn't help you!

As you've been on 8mg for only 9 nine days you could try dropping down to 7mg then 6mg more quickly than every 5 weeks per drop. If you are confident that at 5mg you will be asymptomatic you could push on to that. However at 4.5mg and below I think you'll have to go very slowly with a maximum of 0.5mg drops. This is what I've done in the past, and for me, 3.5/4mg is my sweet spot and I'm now resigned to the fact that getting lower has to be done really, really slowly. I don't flare as such. What happens to me is I overshoot the optimal daily dose by confusing achiness with DOMS, steroid withdrawal, and of course aches caused by PMR. To complicate my picture, many of my aches are relieved by Paracetamol or Ibuprofen at bedtime and I waken with no morning stiffness. I'm only 66 so of course I want to get off Pred but I see you are 82 years young. Is your Dr being a bit unrealistic?. Is there a sound medical reason why he wants you down to 2/3mg and threatens to add in other meds which all have side-effects.?

PS My new Rheumy actually agreed that the side effect profile of Pred was better than Methotrexate, but over the long term of course, Pred falls out of favour.

Good luck.

[PMRpro Ambassador in reply to PMRnewbie2017]

Suppose it all depends on how long the long term becomes. But 15+ years of pred hasn't finished me off yet. It is other non-pred related things causing the problems, And I've been able to function for that 15 years.

[PMRnewbie2017 in reply to PMRpro]

Sure. We discussed the fact that long term Pred may cause bone health issues, cataracts etc. Of course how long is that piece of string? Like you, I would rather stay on a low dose of Pred for years rather than add MTX, Leflunomide into the mix. It really bugs me (incase you hadn't noticed!!) that these Drs have no personal experience of PMR themselves and bully their patients. Seeing the post below from Missus835 is a prime example of that. I get so stressed prior to an appointment, rarely see the same Rheumy and really have to throw the kitchen sink at them whilst playing my Pharmacist with 35 years experience card. I shouldn't have to do that. If I struggle with them, my heart goes out to those patients without my knowledge and experience?

[PMRpro Ambassador in reply to PMRnewbie2017]

My bone density hasn't change more than you might have expected with being 15 years older. There is a tiny cataract - also hardly surprising at nearly 72, No diabetes. I have been exceptionally lucky with doctor as I escaped the bully rheumy as I was moving here. I had a diagnosis and the GP here just carried on the script until I could get an appointment with someone here. The only rheumy here at the time was in rehab but I saw him when my batch of prednisone from the UK turned out to be dodgy and I had some double vision - was it possibly GCA? Conrad speak excellent English and delights to get the practice! Sometime later I had another problem and met the Primar/Senior Medical Consultant. His "hobby" was GCA - I got the last appointment for his clinic and we sat and talked all things PMR and GCA and he provided me with printouts of the latest publications. Before he retired he went to a lot of effort to persuade a young rheumatologist whose childhood home was literally round the corner that he would like to come back to the region as intended Regional Head of Rheumatology, Sarah Mackie in Leeds regards Christian as probably the top name in the PMRGCA field in the world, not just Europe and collaborates with him. He is an excellent clinician, charming, kind and knowledgeable. I have a lot to lose if I leave here! I really can't imagine landing on my feet in Scotland anything like as well as I did here.

[Missus835]

Almost the same, but she has threatened to cut off the pred if I don't follow her taper plan. Was doing ok til yesterday, when I tried to go from 12 to 11 mg. Had a complete meltdown. Very weak and shaking. Crying over nothing. High anxiety. Last night (I take my Pred at bedtime), I tried upping to 13. Although I did sweat a lot (soaking) and have been awake since 4 AM, today is a much better day. Perhaps 12 is my sweet spot for now, but this reduction to 10 is supposed to be done weekly and I should be at 10 already. Listening to my body.

[AyJayBass]

My Rheumy is bald but if he had hair he would be tearing it out at the thought of a sudden taper like this. He has me on a regime which results in a taper of 1mg of Pred every FOUR MONTHS. I have posted the detals a couple of times on this forum so will not repeat here but will do so if requested. He said that I had been tapering "much too fast" in the past which is why I was yoyoing Pred dose.

[PMRpro Ambassador in reply to AyJayBass]

A rheumy we approve of!!!!

[RaisinBran in reply to AyJayBass]

AyJayBass, would you be so kind as to post it for me please?

[AyJayBass]

As you have said before!

[PMRpro Ambassador in reply to AyJayBass]

For the nenefit of others who haven't seen it ...

[AyJayBass]

My Rheumy is Joel David who I am seeing privately in Oxford.

His tapering schedule is like this, starting on 8mg for example. Month1: 8mg every day. Month 2, every 3 days: 8,8,7 all month. Month 3: 8,7,8,7 ... Month 4: every 3 days: 8,7,7 Month 5: 7mg every day.

This could be expressed as Mth 1: O, O, O .. Mth2: O, O, N ... Mth 3: O, N , O, N .. Mth 4: O, N , N .. Mth 5: N, N, N .. Where O = old dose and N= new dose.

I started this regime last August when I was on 8mg. This month I am doing 7,6,7,6 etc. March will be 7,6,6, 7,6,6 etc. And April will be 6mg each day. It is very slow but it is working well for me with no flares. I did have more fatigue than usual for a while in January but that seems to have subsided now.

I am seeing him again in 2 weeks time and will be interested to see if he recommends 0.5mg increments when tapering below 5mg.

[PMRpro Ambassador in reply to AyJayBass]

Accuracy compels me: decrements ...