Advice on how to talk to Rheumy about a slow taper at the lower doses

[redruth123]

Did many people here find resistance from their Rheumy for introducing say the DSNS or DL taper? If so, how did you go about convincing them, or did you simply go it alone.?

My wonderful new Rheumy will probably be OK with it, but in case not, I'd like to get some idea ahead of time of how to broach the topic at the next consultation.

Background - (Sorry for the long post!) - My wonderful new rheumatologist said that she is using the BSR tapering guidelines for my pred prescriptions. This was at the end of a 2nd consult which was by phone, so not much room for discussion.

I was diagnosed in Mar/April 21 under a different rheumy who had me yo-yoing all over the place and believed in old medicine – tell the patient as little as possible!

The new Rheumy is very experienced with PMR. Her tapering plan from the first appointment in late June has so far been - 15mg – 3 weeks, 12.5. – 3 weeks, 10mg – 1 month, 9mg – 1 month and then 8mg for about 6 weeks till I see her again in late November. I’ve been thinking of doing the 9 mg as prescribed as it’s only a 10% drop, then asking her via email if I can move to 8.5 for a month, and then 8. After that I hope to go very slowly, as is so often recommended here. (She also suggested introducing methotrexate, which I very much don’t want to do.)

Like everyone else, Pred has been a wonder drug for me, though at any dosage (20mg and lower) I have never been totally out of pain and stiffness, much less the debilitating fatigue. I have mild osteopenia, mildly high bp which is controlled with drugs, mild gastritis, and my cataracts were removed years ago. The PMR blood indicators are now in the normal range.

Thank you in advance for any experience you’ve had, and any advice.

[DorsetLady PMRGCAuk volunteer]

As she is following guidelines - this is what is says - see under 10mg -

Daily prednisolone 15 mg for 3 weeks

Then 12.5 mg for 3 weeks

Then 10 mg for 4–6 weeks

Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.

My slow taper takes 5 weeks , DSNS similar so don’t see why she should object.

If you can copy and paste both tapers and forward to her so she can see what you mean she may be happier, and also ‘ask/suggest’ that it might be sensible to try 0.5mg drops once you are in single figures.

I think if you make it sound like you are asking rather than telling it is better received. Plus say after your experiences with previous Rheumy you really want to take things as slowly as you can to ensure you don’t flare.

[redruth123 in reply to DorsetLady]

Thanks Dorset Lady. That certainly fills a few gaps in my knowledge. Where would I be without this group? Up the proverbial creek in a barb wire canoe, without a doubt.

[HeronNS in reply to redruth123]

I took in copies of two slow taper plans, showed them to my doctor and asked her what she thought of them. Said I'd like to try one of them. She looked at them and said basically, why not? She was always reasonable, telling me right at the beginning that I would have a lot to say about the tapering, but that was before I even understood what she meant! I think it kept her on my side, my asking rather than telling. But I had intended to follow a slow taper anyway no matter what she said.

[redruth123 in reply to HeronNS]

Great to hear your experience and approach HeronNS. Thanks very much.

[SnazzyD]

Hello, I agree with DL in telling her about your previous experience leaving you wary and unsettled. It may be a ‘bargaining chip’ in order to regain your trust in the medical profession she is a part of so perhaps she might meet you half way. I had to fight my corner and went along the lines of a) I was still reducing without a flare no matter what they said, so that’s good is it it?, b) I had to balance my life with withdrawal symptoms and c) They can’t very well withdraw the Pred because I’m not behaving (didn’t actually say that one). I would really like to know why docs seem to be bringing in Methotrexate for patients who are on or below 10mg. I need educating because it seems nonsensical to me. You were only diagnosed in May and you’re doing well.

[redruth123 in reply to SnazzyD]

Thanks for your experience SnazzyD. Good ideas. I particularly love C ! (made me smile)- though of course I wouldn't say it either, but it does give me more confidence as a patient aka client. I've had pmr since Dec, began pred as a trial in Feb, and wish the docs were not so quick to taper, though I realise they AND us are on that tricky journey between a rock and a hard place. Thank you very much,

[PMRpro Ambassador]

As DL says, it is perfectly possible to use the slowed tapers within the context of a "fixed" taper and then it allows the transition from old dose to new dose to be gentler in a way that fools the body into thinking it will be OK and it protests less while still reducing the dose by 1mg in a month.

More difficult may be persuading someone to allow you to do 1/2mg steps rather than 1mg ones but if you say "it isn't working for me, I feel awful - but this is" a good doctor will help you to do it in a way that works for you.

[redruth123 in reply to PMRpro]

Thank you as always PMRpro. Needed some clarity around this whole issue and you and others have provided it. I feel more confident about what to expect now - half the battle - and how to discuss things down the track if necessary.

[jinasc]

If you give me your email address, via a PM, which will be deleted once it is used. I have a small article written by a Leading Researcher re a small trial she did on the DSNS.

As DL says - download the tapering plans and at present forget about talking about 0.5mg. The old adage applies. Slowly, slowly catchee monkey.

As an aside, I was offered 'steroid sparing agents' ie Metho etc - worked out the side effect total - pred 83 known ones + however many for the SPA's and then said 'why do I want my body to perhaps have to cope with more side effects."

If I had been diagnosed with Late Onset Rheumatoid Arthritis (LORA) which often comes along 'late' then I would probably have agreed to try metho as it is a treatment of RA. However it is a very personal decision and the final bit is that is your body, your decision.

[redruth123 in reply to jinasc]

Thanks very much for advice jinasc, I've PM'd you with email address for the article also. Yes I agree -I am more than happy to swallow pills where needed, but the side effect overload becomes a real worry. And you don't know the effect until it's too late.

[piglette]

I did find below 10mg half a mg worked much better than 1mg in my case. Everything seems to have gone well for you so far. The guidance does say that people do vary on reductions. Glad you have found a good rheumie they are like gold dust.

[redruth123 in reply to piglette]

Thanks for advice and encouragement piglette. Gold dust indeed. This is my 3rd in 9 months. The irony is, it was from advice from this group in the UK that I tracked down a good rheumy in Melbourne Aust.

[ChinaWuntoo]

Just my experience with a rheumatology professor: his bedside manner is not good, doesn't listen, no discussion. In the end I said I would not follow his advice (it did not follow national guidelines) so I agreed DSNS with my GP and, in the end, my rheumatologist got fed up and went away. Less stress for me😀. We don't need a rheumatologist under normal circumstances.

[redruth123 in reply to ChinaWuntoo]

Thanks ChinaWuntoo. It's great to get another perspective.!

[Carver63]

my Rhummy was go slow on the down. i am down to 8mg reducing 1 mg per month. this is my second attempt to land. Flares have been brutle and have forced me up to as high as 30mg/day even with weekly Actemra injections. on the bright side i am feeling better, watching what i eat and trying to get exercise in (more than bed to couch walks) plan any other medical events carefully, having a tooth pulled sent me for a loop. Covid jab # 2 was also hard on my system and both of these events slowed my taper on Pred.

[PMRpro Ambassador in reply to Carver63]

I hope your doctor is bearing in mind that only just over half of patients on Actemra were able to get of pred entirely. The rest got to much lower doses than previously but still required IRO 8-10mg to remain symptom-free. This is because the IL-6 mechanism for the inflammation is only one of the possible causes and Actemra is only effective for that and not for the other two. Not everyone has the others involved but if you do - you will need some pred,

[Carver63 in reply to PMRpro]

yes reducing or eliminating PRed is the goal but it seems to be going a little slower than what the Rhummy anticipated. i am hopeful that i can get off pred within the next year. time will tell. PS i really appreciate this group and the feedback.

👍

[redruth123 in reply to Carver63]

Thanks for sharing your experience Carver63. A lesson for us all there I think. All the best to you.

[winfong]

I roped in somebody else who was more receptive - in my case, an endocrinologist. Haven't broached with my rheumy yet, but he seems more than happy to bow to other specialists, so I think that should be fine.

[redruth123 in reply to winfong]

Thanks for the heads up winfong. I hadn't thought about an endo but always good to know that they can support the process too.

[Grammy80]

I have GCA and live in the states.

My original rheumatologist had a much sharper taper than DL, and I've never gotten below 10 in two years. When I moved to Indiana and went to a new rheumy, I presented him with a printout of DL's taper and info about our forum....and he agreed that was fine, he would go slowly. The one time he went off schedule I wound up going from 15mg to 40mg a few weeks ago. In a few months I will restart Actemra and DL's taper.....the tortoise won the race!!💖

[redruth123 in reply to Grammy80]

Thanks Grammy80. Interesting to hear your experiences and it's great that your new rheumy was very receptive . That's encouraging. Wishing you very well on your next phase.

[Grammy80 in reply to redruth123]

💖Thanks to the forum, we never travel alone. My best to you!