Hi all, I have been registered with the group since last year & found the comments & questions very helpful, but this is my first post.
I’ve been on Pred for just over a year, starting at 15mg & reducing to 10mg over the first couple of months. After that I have been slowly tapering down to 6.5mg over a month ago. Some of the reductions caused some aches & pains to return but I persevered & things soon improved again. At 8mg I felt almost back to normal, no aches or pains & generally quite fit & healthy.
Reducing to 7mg was not so easy but again I persevered for a couple of months & things improved. However, since reducing to 6.5mg the aches & pains returned along with the feeling of acute fatigue, legs of lead etc., I seem to have no energy or get up & go at all.
Last night I woke up around 3am & my right hip was aching quite badly & my legs were ‘uncomfortable’, something that has not happened since I started on the Pred.
I really don’t want to start yo-yo’ing with the dosage but I am feeling pretty much down at the moment & want to get back to ‘normal’
Any suggestions will be gratefully received
Thanks
Alan
Written by
Montemoo
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Hi and welcome now you have come out of the shadows.
You are never reducing relentlessly to zero - you are looking for the lowest effective dose. I would say that you have got there - 7mg is what you need at the moment to control the inflammation. It doesn't mean you won't get lower, just not yet.
The fact getting from 8 to 7 was difficult was the first sign that you were very close to that dose. It is a process called titration - did you do chemistry at school? In that sort of titration you over shoot and then repeat it going really slowly just before you get to the point when things changed - and that is what you do with pred in PMR.
The recommended approach now is to return to the last dose that worked well for you. If you are lucky, just going back to 7mg will do but if not the next stage is to add 5mg to where you flared - in your case go back to 11mg - for a few days to clear out the inflammation that has built up and then go back to 7mg. If that works, stick at 7mg for a couple of months before trying a 1/2mg reduction, preferably using one of the slowed tapers we talk about, to see if you can get lower. You might not, don't worry about it, stick with 7mg and try a small reduction over couple of months. Eventually it will work.
You have the added complication from here on that your adrenal function needs to start to wake up and it can cause aches and fatigue too, By going slowly at this stage it is more likely to work.
Thanks for the reply PMRpro, I had tried upping the dose to 7mg a few days ago but it didn't seem to work so I took your advice yesterday afternoon & took another 5mg on top of my morning dose & have taken 11mg this morning. I had a better sleep last night & so far today feel better than I have done for a few weeks, the pain in my right hip has almost gone & my right buttock (forgot to mention that yesterday) has stopped throbbing.
I seem to have lost the link I had for the slow tapering info, could you point me in the right direction please?
It's in the FAQs - link at the top of every thread.
Right hip and buttock pain is typical of greater trochanteric pain syndrome including piriformis syndrome. Try the stretches to see if you can avoid it getting worse:
How do we know that some aches and pains are caused from PMR, I have been on pred for 6 yrs plus, from 40 mgs, down to 4 mgs at present , but was at 5 mgs for almost 2 yrs, my previous rheumy last saw, maybe before covid, said no longer pmr, aging, arthritis etc, up until first of this year, just had phone appts with her, kept me on 5 re my son,s health, which was stressful, still is ,now been diagnosed with leukemia, and going for bone marrow transplant this Friday int PMH, but new rheumy, saw in April, sent me for MRI, and determined osteoarthritis, in spine and joints, so plan was to reduce, get off pred, so could take other med,s for arthritis, pain in hips, glutes, lower back etc, point Im trying to make here is , how do we know we still have PMR, pain can be caused by some other factors possibly, it,s very frustrating, but I have tapered to 4 mgs now been at that every day for almost 2 weeks, I do still have pain in all those places, but going to physiotherapy, chiro treatments, using ice and heat etc, and I was having lot of discomfort last year at 5 mgs of pred,??
As much as anything experience really but OA often responds to painkillers whereas PMR rarely does. What will they offer you once you are off pred? Most could be used carefully alongside a low dose of pred - my rheumy gives me NSAIDs and if it is higher doses I have to take a PPI (like omeprazole) too and anything that responds to that I assume isn't PMR. For a longer lasting effect for the myofascial pain syndrome stuff I am now getting physio - but it is an ongoing problem and pred didn't really help either there.
Good to hear they have a donor for your son - fingers crossed it all goes OK
As PMRpro says experience allows you to decide on OA or PMR pain. You could try asking the Doc. for some Co-Codamol, prescription variety (30/500)rather than the otc one, as that works for me on the OA and has no problems with the Pred. If that takes away some/all of the pain then it's likely to be OA not PMR. Some people do find it doesn't suit them at all though and it might cause constipation.
sorry what is codomol, I am in Ontario Canada, and all I can take right now for pain is extra strength tylenol, it doesnt really help a whole lot though
oh well here that would be tylenol with codeine then, or acetaminophen with codeine, yes , believe here only can get T1,s, the higher doses require script too, thanks again
At around 7mg your adrenal glands have to start leaping back into action. Mine definitely did not like it and I turned into a zombie by 5mg. I went up to 6mg for a while then stuck at 5mg for several months.
And by all means consider one of the slow taper plans if you are not already doing so. Introduces new dose gradually over several weeks. You'll find links to the most popular ones in our FAQ post.
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