PMR PREDNISONE TAPERING PLATEAU

[Missus835]

I've been on Prednisone since January 2022 for PMR diagnosed at that time. Started at 20 mg. I'm in the process of tapering and seem to be stuck between 12.0 mg and 11.5 mg. At 12.0 mg, I feel good; at 11.5 mg feeling sore in upper arms, neck, etc. and so next morning go back up to 12.0. Also have been trying to drop by .5 mg. every other Monday. What I don't want to do is a cause a flare. The Rheumie would have me dropping 1.5 mg per month (i.e. from 12.5 to 10, then 9 etc., which to me is a significant and sudden drop and I would rather do the .5 bi-weekly. Suggestions please? I know this question is becoming rather "over-asked". Thanks so much.

[DorsetLady PMRGCAuk volunteer]

No question is “over asked” -it just shows it’s an issue that causes many people problems that’s all …

Would suggest that 12mg is YOUR level at the moment -won’t always be, but is for now.

As often said on here you are not reducing relentlessly to zero as some doctors think -you are trying to find LOWEST dose that controls your illness and gives same relief as starting dose.

Just to stick where you are for now, maybe give it another 2 weeks or 4 weeks and try again… and relax for a while. You’ve probably got yourself stressed about it -and that never helps .

[Missus835 in reply to DorsetLady]

Thanks for making me feel like I'm at least trying to do the right thing. Will take your suggestion and stay at 12.0 for a bit. Took 12.0 this morning so looking forward to the next couple of weeks. Thanks again.👍

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

You’re welcome -if you haven’t already maybe have a look through this -

healthunlocked.com/pmrgcauk...

And the FAQs -there as much info/help in the replies as in the actual posts themselves…

Take care

[AnniesRyder5 in reply to DorsetLady]

I have yet again (6th attempt) got down to 7mg but I’m struggling.My quandary is that whereas I feel so much better on 8mg and hence that is probably my body’s preferred level, I was laid so low by Covid that I can’t decide whether to go back to 8mg or keep trying to reduce?

🥺

[DorsetLady PMRGCAuk volunteer in reply to AnniesRyder5]

I would stay at 8mg for a while longer -the current version of Covid although the symptoms may seem milder does seem to make you much more fatigued. Had this discussion with my son a few weeks ago he was saying a lot of his friends/work colleagues who are young and fit have taken a long time to get back to normal.

So give yourself more time -and if not already try 0.5mg steps down -easier on illness and more helpful for adrenals which are also a factor at this level.

[AnniesRyder5 in reply to DorsetLady]

Thank you again 😊

[PMRpro Ambassador in reply to AnniesRyder5]

If you feel that bad - hold the taper for a bit. Did you indulge in Sick Day Rules while ill?

Depending on which version of Covid "got" you, it may well take a while. I saw an article here yesterday suggesting that B5 actually creates quite severe illness. I know a lot of people are testing positive for longer than was the case with previous iterations. Which has a lot of implications - not least that people are out and about spreading it if a specified isolation is used. And Austria has opened things right up!!! Crackers ...

[AnniesRyder5 in reply to PMRpro]

I honestly believe that if I hadn’t had the antivirals I would have ended up in hospital. But the antivirals have their own side effects - diarrhoea being of them, which only makes you weaker.And now I feel as if my knees have disconnected from the rest of me - is that down to post Covid or tapering?

I have very low energy levels. In the morning I find the spirit is strong but only an hour later discover how weak the flesh is.

Like you I also read articles on the latest variant and learned that there is no herd immunity.

And that reinfection can happen very quickly.

🤬

[PMRpro Ambassador in reply to AnniesRyder5]

If you are lucky you have a month. Numbers are falling again here - and I am still escaping so long last that!!!!

[Missus835]

Very informative. Thanks for sharing this link. Cheers!

[piglette]

Rheumies would have us all at zero within minutes of giving us the steroids! I find a four week taper works well for me. I am certain I have problems due to an over enthusiastic rheumatologist at the beginning who wanted me to drop to 10mg as quickly as possible, which in fact caused me a lot of undue pain in my opinion.

[Missus835]

Although I was blessed to actually and finally get an appointment with her (Rheumie), her attitude is very condescending and demeaning. I now have a GP (finally). In Canada, we have to go on a wait list. He seems good. Very direct, no nonsense. Thorough. I think I'll like working with him. I'm thinking the 4-week taper is going to be my go to. Hopefully GP will agree. Thanks for your reply. Much appreciated.

[HeronNS in reply to Missus835]

The only rheumatologist I ever had the (mis)fortune to meet was in the context of an osteoporosis workshop and her attitude was very much know it all and my way or the highway. But I was not her patient and never needed any other interaction with her, thank goodness. Have been lucky with my family doctors.

I'm very impressed with how well you have been doing as you've only been dealing with PMR/pred since January of this year. Like the others I suggest you listen to your body, and do try one of the slow taper methods once you are feeling at your best again. I was able to taper quite well with use of the Dead Slow Nearly Stop method, and DorsetLady's Simple Taper also has good reviews. They give your body a chance to accept the new lower dose. Good luck, and do let us know how you get on. From a fellow Canuck.

[PMRpro Ambassador]

I'd have said exactly the same as DL has said. Everyone's PMR is different, it MIGHT even be LVV (large vessel vasculitis or extracranial GCA) affecting arteries in the trunk that is only showing PMR symptoms which is really not uncommon. And that needs more pred than a less aggressive version. If the rheumy didn't do a PET-CT before starting pred they can't really know.

There are several reasons for some patients needing more pred for longer than others It isn't a homogenous simple disorder - the real experts in the fie'd now realise that and agree with the patients who have been saying it for some time. And the 2 year thing is a myth - a few are over it in 2 years - but by no means everyone is.

[Chicama in reply to PMRpro]

Hey there PMRpro! You caught my attention... with "Everyone's PMR is different, it MIGHT even be LVV (large vessel vasculitis or extracranial GCA) affecting arteries in the trunk that is only showing PMR symptoms which is really not uncommon. And that needs more pred than a less aggressive version. If the rheumy didn't do a PET-CT before starting pred they can't really know."

So bear with me here as my thinking is not as focused as I'd like.... During my initial increase from 15 to 25 to 30mg (I'm currently on DAY 33 of 30mg... awaiting meeting with Rheumy on August 15th to negotiate a slow downward taper of 2.5mg every three -four weeks as it feels okay to drop ... I never got clear of the pain on the lower doses and almost instantaneously felt 85% - 95% better at 30mg? At the time you said I was impatient (I agree, I was "impatient" ... the pain was hideous) and had I waited it out, the pain should have cleared.

So that said... is it possible I've got something like above that needs more pred than a less aggressive version? (And believe me, I'm not going off prednisone to find out.) The goal of my meet at the Rheumy's is to make sure, that they are sure of my isolated (for the moment) PMR dx.

So sorry to be long-winded... it seems these days that it takes lots of words to explain something I don't yet fully understand. I hope this makes sense and promise not to be too embarrassed if it doesn't!!! Thanks.

[PMRpro Ambassador in reply to Chicama]

It is possible - but there are other reasons for needing more which are a bit complex. However - the bottom line is that there is no set dose that is enough - each patient needs what they need, But a lot of doctors have a "one size fits all" mentality for PMR. But if they can't find evidence of anything else - it is probably PMR in sme shape or form. But there is not a lot of certainty

[Chicama in reply to PMRpro]

Humm... getting the lesson about one size does not fit all. Just to clarify -- the lack of certainty on a PMR dx (on the doctors' part) is because there isn't deep knowledge/research on PMR, OR is it autoimmune disorders in general? OR something else you are referring to? Thank you.

[PMRpro Ambassador in reply to Chicama]

Autoimmune disorders in general are very difficult to diagnose in the early stages and can overlap a lot in symptoms which is confusing. PMR and GCA in particular have no definitive markers, just general signs and symptoms which are common to several things so it becomes a weight of suspicion. If you can take a blood sample and see this is typical of x, y or z that is easy. PMR is a diagnosis of exclusion - you rule out all the other things that look similar and you are left with PMR. In the case of GCA there is a biopsy - which if it is positive is 100% certainty it is GCA. But if it is negative it doesn't mean it isn't GCA, it just means they didn't find what they were looking for and there are several reasons for that.

The greatest unmet need in PMR and GCA is not medication - it is an unequivocal biomarker for diagnosis.

[Missus835]

It's as if they put PMR in a box and treat it as if one size fits all and if one has not experienced PMR personally (not that I'd wish this on my worst enemy), they just don't get it and some, if not most, don't want to listen or learn.

[M1keg]

Hi I had similar problems at different stages (I am now on 2.5mg ) what I found suited me was once I was stable I dropped .5 mg on one day and stayed on that dose for at least two weeks then when I was comfortable I dropped another .5 so now two days .5 lower it has taken me 2.5 years and some setbacks but I seem to be ok on 2.5 so in two weeks I will drop to 2mg on Weds only, this is even slower than dead slow but as numerous people say we are different you have to do what works for you

[catdance]

Hi Missus835, I was diagnosed in Aug 2020 starting at 25 mg. I was all the way down to 4 mg last Dec but had an awful flare due to the vaccine and had to return to 15 mg. I am currently around the same dose as you trying to taper from 12.5 mg to 11 mg unsuccessfully. I had about the same symptoms with a lower back ache, fatigue, brain fog. I am staying at the 12.5 mg for the moment and will begin to try to taper after having been at that dose for 10 days. Then I am going to try to slowly taper to 11.5 or 12 mg. I'm going to let my body decide. All recent blood tests indicated that the inflammation was on the rise but in the OK zone. Have you had any blood tests done recently to help you determine if tapering should be a go or not?

[Missus835 in reply to catdance]

Yes. I have bloodwork every month, but I'm never able to get the results. The Rheumy does not contact me - ever. Should I assume that means levels or ok??? I tried, but the Nurses' Station are not permitted to give blood results. So, now that I actually have a GP, I go for bloodwork ordered by him on Aug. 10. I've taken 12 mg for the last couple of days in a row, I feel better. Actually went to the beach this afternoon and swam for a bit in the ocean (which was way too cold). Going to stay there for a couple of weeks as I'm trying a mini-vacay on Aug. 17-19ish and want to feel good for that. Then I will drop down to 11.5 or 11 and see how she goes. I have to work 8-3, so mornings are crucial. It's an individual thing for sure. All the best to you in your tapering adventure. 😉

[HeronNS in reply to Missus835]

Most people who are working find that they need a bit more pred than someone like lucky me who is retired. Even the most pleasant occupation does have a bit of stress attached to it, and also you can't just drop everything and go have a nap if you need one.

[PMRpro Ambassador in reply to catdance]

But if it is RISING anyway and you REDUCE the dose it will rise further. Just because it is still in the normal range doesn't mean it is normal for YOU - the normal range is a range that includes 95% of the normal population - not a range that is OK for any specific person.

I do wish doctors understood what normal range means.

[Missus835 in reply to PMRpro]

I know right. But since she doesn't answer me and is more difficult to get hold of than the gods, I don't know if it is "normal" and obviously if it is, it's the prednisone doing it's job. After waiting 6 months for a Rheumatologist, I'm highly disappointed, not that I expect her to be available at my whim. The GP seems to be a bit more pro-active. We shall see. I appreciate all the feedback so very much. Thank you.

[catdance in reply to Missus835]

I agree 100% with the normal isn't "normal" for everyone and yes it will as I have learned the hard way. It's seems very strange that you can't access your results. Maybe the GP can get them for you then you could have a look and see what your "normal" range is? I hope you are able to successfully taper and it sounds like you have a good plan in place!