Good morning. I have learned much from this site and thank all of you for the good information provided here.
I have had PMR for a little over two years now. Compared to others here i feel fortunate for not too bad a ride. I have followed the go slow approach all along and things were going well until a couple of weeks ago. I was down to 1.5 mgm then made it to 1mgm. Stayed on that dose for at least a month. Go slow again I took 0.5 mgm a few times (5-6 days apart). Then I started with a little morning hand stiffness every day. This began about ten days ago. So I have been staying on the 1 mgm dose. Today the stiffness is a little more pronounced so I took 2mgm this morning. Not sure this will be enough but I really hate to go up again. I was really doing quite well so am somewhat disheartened. Any advice would be appreciated. Thank you.
Written by
JR57
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I've just been there. You may need a bit more, only wait a day or two to see if your slight increase works. This is what happened to me - see if you recognise yourself :
I tapered using the dead slow method from 2 to zero over a year, reaching zero in June of this year (I did each step of the taper twice which is why it took so long). I seemed okay except for osteoarthritis. But about three weeks into the zero zone I began to feel a lot of that old, original PMR pain, you know, the pain which feels like you've over-exercised, but it never gets better. After about a week it dawned on me I had not been ready for zero after all, as you may not be ready for 1 mg. I took 5 mg and by the end of that first day felt ever so much better. One is often recommended to stay at the higher dose for a few days, but as I'd been below 5 for four years I didn't want to do that, and this is how I tapered down - one day at 5, two at 4, two at 3, two at 2, two at 1.5, then planned to stay at 1 for a while and see how things went. But four days into 1 mg I have a very slight but suspicious niggle, and not willing to get into a yoyo pattern I've decided I probably need 1.5 indefinitely, so that's my current plan. I took 1.5 this morning.
I don't think taking 1.5 at the beginning of this flare would have been adequate. I would likely have had to keep shifting up the dose and I think it's better to give the inflammation a good hit with a reasonable dose of pred then slink back down again. I think you end up taking less pred in the end. A few years ago I tried the other way, and not only did it take a long time to finally give in and take the 5 mg extra, having spent weeks working my way up, it than took me a year or more to get back to a dose just above where I'd flared originally, so I'm sure I took significantly more pred that way than I have done (so far, fingers crossed) this time.
The hard part is, having worked so hard to get down so low, actually admitting you need a bit more than you really want to take. But you wouldn't be at 5 (or 4 or 6 or 7 whatever you think will work for you) more than a few days at most. What many people do is take 5 extra mg for up to a week than drop right back to just above where they flared. I've not done that, a bit chicken to try, but apparently it works.
Try the 2mg for a few more days to see if things improve - 3 or 4 should tell you. If so stay on that dose for a few weeks just to make sure.
If it doesn’t work, then maybe a short blast of 5mg for 4-5 days should sort it out - you should then be able to drop back down to 2mg.
I would guess that 1,5mg was enough to control things, and you might have sailed along at that dose without issue quite happily, but the drop to 1mg was perhaps pushing your luck a bit and the foray to 0.5mg was a step too far! It sounds a small amount, but we all know half a mg or even quarter of mg can make all the difference.
Whatever route you take, just make sure 2mg is plenty before you try and reduce again, it’s a minimal amount with no side effects, so no rush.
You have done VERY well - you aren't heading relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose did. Most people would be so pleased to be well below 5mg!
If you were good at 1mg then maybe 3 or 4 days at 5mg and drop straight back to 2mg will do the trick.
Thanks to all of you for the quick responses. It would take a few days for me to reach my MD for advice. I do have a scheduled appointment in two weeks.
I think I will try a few more days at 2 mgm and if no improvement then go up to 5. Hoping for the best. Thanks again. Love the help here.
I would agree with everyone who has replied. Jinasc has touched on another aspect, adrenal function. I managed to get to 2.5mg twice only to realise too far, too fast. If you encounter anything in your life which requires more cortisol this can destabilise you. Possibly the start of a flare if your disease is still active or the symptoms of adrenal insufficiency. I found the stressor didn't have to be an unpleasant event. Anything which required a bit more cortisol could tip the balance. I have written before about a kidney transplant patient I know who was told to stay on the new reduced dose for 3months before attempting a further reduction. I just cannot understand why Rheumatologists don't adopt this approach.
Thank you for your input and suggestion. I will see what he says in two weeks. I asked for a Synacthen test six months ago and he did not think it necessary. Maybe now is the time.! Have a nice day everyone.
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