B) toggling the dose of every second day down to 0, and then trying to reduce the remaining day? I.e. 4/3.5 for a week or so then 4/3, then 4/2.5, then 4/2, ...4/0, then 3.5/0, etc?
FYI.I've been trying a taper of alternating 4/3.5 for the last week. It has been very comical, as I feel good and can accomplish a normal days activity on 4 mg days, but have intense fatigue (but no aches or pain) on the 3.5 mg days. One 3.5 day this week I took a 4 hour nap. On another, I had to eat most of my dinner in a restaurant with my eyes closed to conserve enough energy to be able to get my food to my mouth. The fatigue is now lessening on the 3.5 days. Also, I did a straight drop from 5 to 4.5 at beginning of January and two weeks or so later did straight drop from 4.5 to 4 for 2-3 weeks. Both were fine.
Or does almost everyone use the dead slow method?
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Meg1711b
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I used the alternate day dosing approach early on in my "PMR with pred" journey and it worked fairly well for me. I couldn't get below 17mg every second day - but I have no idea if that was because of ADD or just I couldn't get lower. It isn't recommended for GCA at all and it poses problems for some people because the antiinflammatory effect doesn't last long enough for them - it lasts 12-36 hours. If you are the 36 hour end it will work as it is still working the second morning, if you are the 12 hour end it obviously won't.
Your intense fatigue on the low days will almost certainly be due to your adrenal glands having caught up and producing enough to top up the 4mg, but still a bit low for the 3.5mg dose. Particularly when you are exerting yourself - going out for a meal would come under that. With time your adrenal glands adjust to the extra need, make a bit more cortisol and you start to feel better. Your body is working the way it should and you may be able to continue reducing the way you are if that continues to be the case.
However - I'd not recommend using the alternate zero days at this stage for exactly that reason. It is a big adjustment for your body on the alternate days with no baseline pred and you run the risk of overwhelming fatigue and even becoming ill due to lack of adequate cortisol if you happened to be subjected to stress - of any sort. An adrenal crisis is no joke and can be very dangerous, especially if it happens when you are alone and with no-one to call for medical help.
Many people CAN reduce as you have done - most of them probably never come near the forums because they have not had problems. But you are "losing" alternate days at present and for a lot of patients that happens when they try to go from every day one dose to every day of a lower dose and it happens for days, sometimes as much as 2 or 3 weeks, just adjusting to the change in dose. That was the idea of the Dead Slow approach. Originally Ragnar the Swede worked it out to get below 5mg which he had failed time after time - until he took the same sort of approach as DSANS. I just added to it when we realised there were a lot of people struggling to reduce, who were being "threatened" with "steroid-sparing" drugs. A lot were able to reduce lower than ever before just by going slow.
There are now quite a few patients who are getting closer to the end of their journey who are saying they have never had a flare using it - so have never had to go back to a high dose to manage a return of symptoms. That of itself reduces the total amount of pred they will have taken. Having a flare is very demoralising - especially when it happens repeatedly.
Thank you for another gem of a post PMRpro, prompted by Meg1711b.
Lying in bed pole axed by reducing from 10mgs to 9mgs for the first time. It will be dead slow and often stop for me I think. You forget how painful PMR is, when you are wrestling with steroid effects and feel just blerg!
Hi could you give me some more advise please , went to my GP she has had some more blood tests done to see if the markers have gone up the Rheumatologist letter states in her opinion the PMR is in remission and the pains aches and pains are all down to osteoarthritis but the way I feel with the muscle ache and pain is exactly how I have felt all along with PMR .I think coming down 1mg a moth from 5mg to 2mg was to fast to fast ,now I am worried if the markers are not raised with this last blood they won't let me stay on preds any advise please
Speed doesn't have a lot to do with it - if you go to a dose that is too low to manage the inflammation it will cause the PMR symptoms again, however slowly you go. Since you are still on a small dose of pred it is possible the markers won't go up - if you are lucky they will have. I really do not understand how any doctor thinks they can say the PMR has gone away as long as a patient is on pred, even 1mg can be the difference between no pain and pain.
OA doesn't usually cause muscle pain, it affects the joints - and when you have had PMR you know what it feels like. If someone has OA it is usually hand pain that returns with a low dose of pred. When did the pain restart? Were you OK at 3mg or was it sooner?
Ask your GP if you can try going back up again, most doctors are quick enough to tell us that pred doesn't help OA pain! If it sorts the muscle pain you have a good basis to discuss staying on pred with her. If it is OA then there should be signs on x-ray although what can be seen on an x-ray doesn't always match the amount of pain. However, it would at least show if there IS any OA to blame anything on,
My experience was that the rheumy didn't believe it was PMR but a GP who'd seen a lot of it was happy enough that that was what it was. And everyone since has agreed.
Thanks for reply oa has shown up in some joints neck and hand but this ache and pain is all over legs lifting my arms and in the morning I have I job to get out of bed and in and out off car if does seem to wear of a little as the day goes on ,that could be after taking preds paracetamol seems to have no affect at all ,would preds mask oa .Thank you for your help
They might - but what you describe, taken in isolation, should prompt a doctor to consider PMR or something similar. Lifting arms and being unable to get out of bed, stiffness that wears off a bit during the day are all typical symptoms. OA doesn't do that. They give paracetamol for OA pain - it does NOTHING for PMR for most people.
Thank you for your help going back to see my GP next week so will let you no how I get on ,I have some preds in hand and I am so tempted to take but probably best I wait .
I don't know. If it were me I would try a dose one day and see what it does. If it helps rapidly it would be an added sign to flag up to the GP. But it is your decision of course
I must admit I agree with PMRPro and I would take the pred and see what happens. Mind you it may not be a good idea to do what I would do as I may be a bad influence!
Me too, I have a repeat prescription for 100 at a time of each and order as I fancy on-line. I think I may have intimidated the GPs at my surgery. The GP I have been arguing with about Alendronic Acid is now off with stress symptoms. No backbone these young lads.
Hi what is your opinion of alendronic acid is there anything any better ,I haven't taken any for the last year worried in case I needed dental treatment ,I had a bone density scan before coming off them and that hadn't changed in 3years I would be interested to know what you think
It all depends on what your dexascan results were. I have never taken any (well, 4 tablets) and after well over 7 years on pred, much of it at above 10mg my bone density hasn't changed much and is still perfectly acceptable.
I had some difficulty alternating doses at different places on my journey because on fatigue days I had difficulty functioning at work, never mind coming home to make dinner! Slowing things down with the taper makes things easier. Don't forget that the lower you are, the bigger the percentage the drop of even .5 mg is. For me, I'd never attempt the large alternating doses. My body objects to being asked to adjust to just a .5mg difference. I've been tempted to drop .25 mg at a time but that would require very careful work with a pill splitter 😄
Just to reinforce the wise words of PMRpro. I had trouble reducing from 10mg to 9mg and started to use the Dead Slow method. It has worked well for me. From 10mg a little over a year ago I am now on 2mg going to 1.5mg and that is despite various infections (chest,UTI,Shingles) a broken wrist that needed an Op for internal fixation and a Heart Attack with Stent fitted
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