Prednisone taper

Bones, joints and muscles
1

hi,

new to this board, frustrated, and hoping I will be lucky enough to get some feedback that will lead me to make correct choices.

diagnosed with PMR, in May, of this year. 

I was in a wheelchair, by that time, because local doc's thought it had something to do with my lymphoma, and couldn't get beyond that.

a shot of Pred, 20mg. Had me up and about, in 20 minutes.

since May, 12th, I have been tapering every3-4 weeks, and at 5mg, I tapered 1 mg. down, at a time. At 2 mg, I tapered by 1/2 mg,  and stopped, 2 weeks ago, altogether, 

After 8 days, I felt a little bit of discomfort in shoulders, a little overall weakness, heavy legs, and called my Rhuematologist.

he was appalled that I had gone off, and wanted me on 3 mg's immediately, for an unknown period.

instead, I hadCRP, ACE, etc., which showed a small amount of inflammation.

however, that can also come from my Sarcoidosis, or lymphoma.

by the time I saw him, this week, I was much better, almost normal.

he recommended I go on 1 mg. for 6 months.

yesterday, I took 1 mg. pred., as he suggested.

my joints, my neck, my lower legs, began aching, in an hour, I became unstable on my feet, and tired. My legs were heavy, etc.. I felt a kind of malaise settling in.

rheumatologist says that's normal, and it would go away with time.

i think I'my screwing with my body, and upsetting whatever balance it's achieved.

i took 1/2 mg, today, but am afraid of starting again, especially on 1mg, since I haven't had that much for at least 6 weeks.

Is there anyone who has gone off pred in 6 months, and not gotten the PMR back?

Anyone who did get it back, and what did you do, and how long did it take to come back?

anybody with any ideas or suggestions, I appreciate your input.

barb

2

Hello Barb, welcome to the site. I'm going to leave all the medical stuff to those on this site who are very knowledgeable re PMR and its treatments etc.

i'm simply replying because if you were diagnosed with PMR in May of this year I am truly surprised that you have managed to taper down to almost zero in such a short amount of time. And I'm also surprised that your rheumatologist was happy with such a rapid reduction. When I was diagnosed I was put on 15 mg for 6 weeks, 12.5 mg for 6 weeks, 10 mgs for 6 months, 9 mgs for 6 weeks and I'm now on 8.5 mgs following a flare up when I reduced from 9 mgs to 8 mgs. Please take heed of what some of the visitors of this site suggest, some are as previously said very knowledgeable and that knowledge is based on solid medical training. PMR can be most tricky to fully get under control as we all respond to tapering of medication differently and flare ups are a right pain in the neck, literally. Christina

3

Not that I know of to be perfectly honest.

PMR is just the symptoms of an underlying autoimmune disorder which causes your immune system to attack your body by mistake. As long as that is active you will have inflammation and that will cause inflammation and the symptoms we call PMR. It does usually burn out and go into remission but it is usually more like 2 years than 6 months before that happens - and I have had PMR for 10 years and it is still there it seems. I am fine at 4mg pred, not at 3mg. 

I would say that you have tapered far too fast - not allowing enough time at each dose to make sure you are stable. This is particulary the case below 5mg or so where you have to allow your body to catch up with making cortisol again, the natural corticosteroid essential for life and made by the adrenal glands, 

I know several ladies who got below 5mg and were doing well, even as low as 1 or 2mg, but within a short time after stopping altogether because apparently all was fine the symptoms returned. And they needed to go right back up the dose to get it under control.Once you start yoyoing the dose it can become increasingly difficult to get the symptoms under control. A very slow reduction also avoids confusing the pain due to steroid withdrawal - because it is very similar to the PMR pain. 

Men often tend to be able to manage without pred sooner. About a quarter of patients are said to be able to get off pred in a year or so - but they are far more likely to then relapse soon after.

This link will take you to a post with links to other places you will get information including a very reliable support site, its forum and a paper by top UK experts withthe reduction scheme Christina has mentioned. In the 4th and 5th posts is a very slow reduction scheme that I and quite a few others have used successfully:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Eileen

4

Hi Barb - WOW that's a reduction and a half!  Eileen our Guru has hit it on the head - too fast.  Are you in the UK? or it sounds like the USA where there seems to be the culture of trying to reduce in the shortest time possible - not a good move.  I have no underlining problems was diagnosed in June with PMR and have only reached 10mg, and as sure as eggs is eggs I'm staying there for a few months.  Best of luck and I hope you get it stable.

5

Wow!!

wish I had found this site, much sooner.

my thanks to all of you, especially, Eileen, for the the quick feedback, and informed responses, and Christina, for making me feel welcome.

I will take your suggestions, seriously.

John, you hit the nail on the head.

i'm from the good old USA, and the doc' in general, don't understand how/why PMR exists, and how to deal with it.

i'm going to go back on 1 mg., immediately, although I am worried about the effects bouncing around, as Eileen mentioned.

i'm also going to suck in the info that the link provides me.

Why do I get the feeling that the doctors in the UK, are so much more advanced in the understanding of this (I don't know what to call it) immune response, than those, here in the US.

Thanks again.

i think i'll hang around a while, if you don't mind,

barb

 

6

Barb, I live in the USA also and find that the doctors here are not as knowledgeable than they are in the UK.  There has been lots more PMR reseach done, than here.  I feel the doctors, especially the Rheumatologists, tend to taper prednisone way too quickly, or they give you the option to take MTX which would not work well, and would do far more damage than taking prednisone for PMR.  My GP luckily was open to the Bristol plan when I told him about it.

This website is excellent for guidance.  Welcome!  All the best to you, Erika

.

7

Thanks, for your feedback, Erica.

I know more about PMR, tonight, from you guys, than I've learned in the past 7 months, from doctors.

OK, You've just introduced something else I've not heard of.......The Bristol Plan"............I've got to look that up, too.

thanks.

8

Just googled "the Bristol Plan and came up with nothing, so far.

9

Also USA, it seems like you use a consult from one of the big clinics. I went to Cleveland Clinic last summer and got sorted out. Three Drs looking at me as a whole person. I think Mayo may also do this. I went close to where I live. Very pleased.

10

Barb, Eileen will give you the information with the thread to their approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis.  It is a symposium review with excellent information.

The problem here in the USA is that the doctors do not consider PMR life-threatenting, although it can be life-limiting with all lthe pain when a flare hits, and ONLY prednisone can be of help.  It depends how much a person needs to have a quality of life --- I find, that this is often a personal decision when a flare is happening, and only a certain amount of prednsone can be of help.  I was diagnosed 4 months ago....still struggleing --- presently on 15 mg of Prtednisone for 6 weeks following the Bristol plan.

11

You were lucky --- amazing 3 doctors looking at you as a real person.  The big clinics are not the best.  My GP has his own private practice and he does listen,  and he does take PMR seriously, but I was not told all the details about the disease when he diagnosed me.  I was desperate and could not understand why my shoulders and lower back were hurting. I learned a great deal from this forum.

12

I gave you a link in the first post I wrote. It takes you to a post with further links. The final link is to a paper called "Our approach to the diagnosis and management of PMR and GCA" by Quick and Kirwan who at the time were in Bristol and did a lot about PMR treatment and wrote this paper to assist GPs in looking after their patients - because even in the UK they often struggle believe me! So do some rheumatologists who seem to classify PMR and fibromyalgia together (nothing like each other and you can have both) and something that is beneath them.

The first link in that post takes you to a support site with a load of info too - all approved by doctors so no woo!

13

Hi Barb

Sorry you have had such a difficult time. I had PMR symptoms for a year (with raised ESR, CRP and anaemia) before they finally sent me to a rheumy in June this year. I also have diffuculty breathing which they have no idea why and ended up in coronary care at one point. Anyhoo....I was commenced on 15mg Pred and told this would be for a year slowly tapering down. I understood the importance of compliance etc but for me the side effects were not acceptable. Also a follow up appointment was arranged for March with the rheumy initially and then they changed to come back in June. With (as far as I was concerned) little interest in my issues I took myself off after 7 months tapering slowly as the pain had returned once again at 5mg anyway. I do wake up at night with shoulder/hip pain etc but perhaps I am lucky in that I do not have the same intensity of symptoms and have not had a return of the shuffling around because of the pain and stiffness. Now, if they could only sort out the breathing x