Tapered to 2 - 1.5. Now thing going haywire. Felt ok on 2 but not perfect. Stayed on 2 for about 6 weeks then tried 1.5 using DL DSNS. My legs, feet and hand started tingling and a burning sensation. Also I developed what I thought was a stiff neck. Last night early this am my whole body started to have the burning sensation and I ached all over. Tried to get out of bed and couldn’t very easily. Eventually I got up by struggling and took 2 Pred. The relief was almost immediate.
Was I wrong to do this. Cannot contact GP until tomorrow. I am feeling very low which is unusual for me .
Big question…… do I take my usual dose today .
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Suffererc
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No, you weren't wrong to take 2mg and the fact that your symptoms were relieved shows that 2mg is the dose you need. You may have read on here that Professor Dasgupta, reknowned rheumatologist, believes that some people need to stay on low doses indefinitely.The burning sensations may or may not be due to nerve problems but this should be reported and investigated if symptoms persist.
Take 2mg today and tomorrow and speak to your doctor on Monday. Wishing you well.
How disappointing. So are all your symptoms gone with that increase? If so I’d say your adrenal function hasn’t caught up with the rate you are reducing. When I got to that level, my 0.5mg drops were done over about 10 weeks minimum, sometimes more. I also pared back my life so as not to challenge my body too much while my adrenal axis was working it out. I’d be asking the doctor if I could stay on this dose for a few weeks and then start again but much more slowly. What have you been doing over the last week in terms of activity?
No, not wrong, as suggested take 2mg again until you can speak to doctor. This may not be just down to the taper-so does need a bit more thought about it.
However if you weren’t 100% sure on 2mg it might have been more sensible not to try to taper to 1.5mg.
The “feeling low” may well be adrenals struggling, so perhaps suggest to GP getting them tested.
…and don’t try reducing again until you feel a lot better.
The adrenal problem is nothing to do with the PMR being there, it’s to do with the adrenal glands having been suppressed by the Pred for so long they need to remember to work properly and this phase can take time. Do read the Adrenal gland section in the FAQ’s, it’ll make more sense.
No, not wrong at all if it worked! You are NEVER heading relentlessly for zero - whatever any doctor claims. The guidelines - all I have ever read - say that the taper and dose should be adjusted for the individual patient. You are doing a process called titration, tapering the pred dose to identify the lowest effective dose for YOU, the lowest dose of oral pred that gives effective relief from symptoms.
You appear to have found it: 2mg. It is a low dose and one that any sensible doctor would be pleased about. It may be the PMR or it may be adrenal function - either way, it means you need a slower approach to this last lap which can take as long as the rest put together. But no doctor can tell you you don't have PMR any more until you are entirely off pred and the symptoms don't return after as much as 6 months. Even 1/2mg of pred can be enough to mop up the tiny bit of inflammation from a low activty a/i process but without it the dripping tap fills the bucket and it eventually overflows. The propensity to develop the inflammation with PMR never goes away - it just burns out and goes into remission, but it can always poke its head above the parapet again.
HI. It is a LONG LONG way from 2 to 1.5. I have tried it a couple times and ended up going back to 5 and working back to 2. I am now once again at 2.5 and having trouble getting to 2 so have stayed here for the last 3 months. I have for all intents and purposes been around 2.5 for 2 years. I am starting to think I might just hang here forever. Which wouldn't be so terrible. One friend who has PMR was told being at 2 forever is not such a bad thing. That said if the PMR goes away and your adrenal glands work fine then heading to 0 is doable. I think my PMR is still here but at bay with 2mg. GOOD luck!! take is SLOW. Do not despair.
As you felt slightly uncomfortable at 2mg it was probably not a good idea to carry on reducing until you felt everything was OK. Remember you have reduced your dose by 25%.
I stayed at 2mg for 3 months and am now doing the ultra-slow taper to 1.75mg, (new dose 1day, old dose 6days, 1 day new dose, 5 days old and so on) It is very slow but once on 1.75mg every day will stay there for a while then do the same to reach 1.5mg . Tortoise, not the Hare!Good Luck!
I would have done the same thing. “ A stitch in time” your doctor will understand. That flare was building into something big and nasty. I would give yourself a week on the higher dose then try to return straight to 2 mg. It is possible that it’s a bit late for a straight drop. I think I would be resting at 5 mgs then tapering if everything settled.
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Disassociated feeling
feeling out of my depth
Feeling very despondent
Breathless and feeling off. PMR symptom? Also coated Prednisolone with omeprazole.
Feeling Dissappointed
