PMR, Prednisone, tapering

The pain has not gotten any worse since I started the taper. It actually only bothers me when I lie down. I am using the ds&s method and have also really limited my normal activities. This definitely feels like PMR pain, particularly because of its location just down from the top of the shoulders, on the outside. I would say the Tylenol makes it manageable...will see tonight at bedtime, as I cannot sleep on my back. So afraid of a flare.

If you feel like that I certainly wouldn't continue tapering.  Wait a few days at your current level and if it starts to get worse, then consider increasing your dose - don't let a flare happen!  If it stays the same, or feels a bit better, maybe responding to other painkillers, you could consider a cautious, very small taper.  My understanding is that 7 mg is a common sticking point, for me it was, although I was able to move on after about two extra weeks.  Your adrenal glands will be starting to wake up now and they may just need a little push from your next taper.  What I did at 7 was try to go to 6.5.  I tried several times, with about a week in between, until one time it seemed okay.  And since then I've been tapering successfully.  Each time, and this is since 7 mg, each time I start a new taper I think, oh no, this is the one that's going to not succeed.  A week ago I was really wondering about 4 from 4.5.  But the last couple of days I am feeling much better.  Taper not quite over, but very close, kso I feel quite secure in saying I'm now at 4 mg.

oops, sent before I was ready.  Just wanted to finish by saying that my shoulder is also getting better, and I think it's one of those "add ons" that Eileen sometimes mentions.  As pred is reduced perhaps my muscles are starting to regain some of their normal tone, so that might be helping.  

Very helpful information! I will follow your recommendation and stick with the 7m and see how it goes. Today the Tylenol really helped...will take some at bedtime so I can sleep on my side! I am encouraged by your tapering experience. It makes sense that there would be withdrawal symptoms.

In a couple of weeks I will see my rheumy...will be interested in my ESR and C-reactive Protein numbers. 

 

I guess I should check in with you as I had encouraged you so much at 7 mg.  Now I am at 4 (with still the odd day at 4.5), and I am soooo tired.  The other symptom I've noticed is often getting kind of dizzy or faint.  Of course I forgot to ask my doctor about this when I saw her a few days ago, but I bet it has something to do with the pred reduction and the slowness of the adrenals to pick up their pace.  Probably a good level for me to hang out at until those episodes stop.  Glad to note from your other comments that things are going well for you with the slow taper.  Cheers,   Jean

I think that is a good idea. Our "pet rheumy" in the UK likes to keep people at 5mg for up to 9 months - and finds it makes the next stages easier.

Thank you Eileen.  If I'd had fewer of the serious side effects I'd have gone a bit slower at this stage.  But if things painwise stay okay at 4 I think I'll be happy enough hanging out here for a while.  I hope you are doing well.  Have you been able to taper at all since that flare?

Down to 12mg - and saw the big Chief the other day who said that 10mg is the magic point, though preferably below 8mg. No hurry - unusually for the doctors but then, he's a medic (internist in your language I imagine) and not a rheumy. 

Don't forget though - your bone density loss may not entirely be due to pred. Unless you have a dexascan before or within weeks of starting pred you cannot know - that baseline is essential. If I had a baseline now many doctors would tell me my bone density was osteopeneic and due to pred I needed to take whatever. It hadn't changed over a period of 4 years. The "bone protection" wasn't needed to achieve that status.

But the corollary to that is that IF you do show osteoporosis or nearly so and it wasn't defiitely due to pred - it isn't going to make any difference getting off pred faster. There can still be falling bone density.

The "magic point" does that mean he`s happy when we`re down to that, or the adrenals kick in then.  I have been on 11mg for a few months now, because any change .5mg, and my body responds!  Tomorrow I want to go very slowly go down to 10.5...I`m even nervous about that, and always have done it very slow!.....My doctor says do 10.5 one day 11 the next, but when do I take the plunge and do two days at 10.5?? 

Glad you`re reducing ok.....

Thanks for any info...

He's happy once you are there. The adrenals probably don't start to stir until a bit lower, the 8mg level.

Have you not seen the "Dead slow and nearly stop" approach? You'll find it in the replies section of this thread:

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

Is it the PMR that raises its head again or is it "steroid withdrawal rheumatism"? That tends to happen immediately, as soon as you reduce the dose, and then gets better over the following week or so. PMR usually takes a few days to start and then gets worse with time. If it is the PMR then you are simply not ready to try a lower dose because the disease process is still too active.

Hi Anhaga (Jean)

i too have lots of trouble with fatigue and when I reduce it has been my main bad symptom - other than the aches/stiffness of course.

I tried reducing from 4 to 3 1/2 and it wasn't going well - I always use the DSNS. My current experiment is to reduce from 4 to 3 3/4 and so far it's working. I'm down to the lower dose every day this week and hopefully I can carry on at it for awhile. The only issue with this is cutting those little white pills into quarters but a sharp chefs knife works well. 

Thanks for this Mrs CJ.  I'm considering trying that myself when I feel ready to move on. 

Thanks Eileen.  Glad things are going in the right direction for you.  It isn't just the bones, in fact less that than almost anything else because I perhaps foolishly feel I have some control over that.  No, I was worried about the high blood sugar and eye pressure, mostly the latter because there's nothing I can do to reduce that. 

If you have raised pressures then there are eye drops which help but they aren't used until a given threshold is exceeded. The raised blood sugar can be managed either with diet or, if that doesnt work, there is medication. Somewhere you have to accept medication.

Thanks Eileen.  I might seem unreasonable, (how one wishes for an edit or delete button).  However I'm not really a fool.  Doctor had told me I wasn't needing drops yet, called me back for an early recheck, and now the pressure is down nearly to where it was pre-pred, so no problems.  I take pred, don't I?  And I would have used the drops if I'd needed them.  So getting down the pred dose has meant that my blood sugar is now in normal range again, and so is eye pressure.  

All good! 

I should also have said in that last post - sometimes I reply to add in a bit of info for someone who reads a post and doesn't know that answer. Does that make sense? Someone without your knowledge might think that there is no answer at all - and not ask their own question to be told there are options.

Of course, I should have understood that!  And I know I leave stuff out sometimes that makes things a bit unclear.  So much easier talking to people face to face because then we pick up through body language what needs to be said and what is obviously a given!  Hope all well with you.  💕