I have posted several times before on my lack of success in dealing with PMR. Earlier this year I had yet another flare and needed to go up again to 17.5mg. As previously recommended by members I commenced with what I thought was a slow steady reduction of 1mg every 2 weeks and from 10mg a reduction of 1 mg every 3 weeks unfortunately at 8mg I had yet another flare. I am now trying to manage at 15mg and keeping my fingers crossed a my flares are occurring on a rising trend in that my first nearly 5 years ago was at 4mg. I am also concerned that as I am now on 2 other strong drugs, Tamsulosin ( 2 months) and Pregabalin (1 year) to deal with other medical issues how are these likely to interact?
Any advice would be most welcome as I my my experience medics struggle to advise when 2 strong drugs are involved, let alone asking their advice when 3 are involved.
Written by
Blacksley
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You are better off asking a pharmacist about drugs than medics, in my opinion! A lot of doctors seem to be pretty ropey on drugs as they do not seem to read the literature.
It is beginning to be quite clear there is one version of PMR that lasts a long time and manifests with intermittent flares of disease activity. Following tapers become harder and harder, particularly if tapering is a bit hasty, and the flares are allowed to get a hold before increasing the pred dose, There are a few of us that fit this pattern: mine is like that and so does tangocharlie , There are others. I have had PMR for 18 years and had got to a stage because of stress and flares I needed nearly 20mg - my rheumy put me on Actemra. I am noy down to 5mg.
I'm afraid I think your tapering is more than hasty - from 10mg the taper should never be more than 1mg per month and many struggle with 1mg every 2 months/1/2mg per month. Two weeks is rarely long enough to be sure you are still comfortable at the new dose so when your flare appears you have no idea where it went wrong. Doctors may complain what we suggest is slow - it isn't slow when it works.
When you flare repeatedly at a similar dose, that is your body telling you that you have arrived at your destination FOR NOW. It doesn't mean you won't get lower, just not yet. You aren't reducing relentlessly to zero, you are TAPERING the dose, titrating the dose to find YOUR personal right dose.
I don't imagine anyone can tell you how those drugs will interact - such things are established on a one to one basis, add another substance to the mix and the dynamics change. In theory they don't interact - in practice, probably not but you can't tell.
I concluded years ago that the very notion of 'getting off steroids' by a steady taper in a fixed timeframe is absolute nonsense. It should only be guidance, not a rule. You cannot taper until your body is ready for it and the inflammation has died down. If your body needs say 10mg Pred there is no point giving it 9. I've had PMR for 11 years and thanks to the incompetentence of various doctors forcing me to reduce I'm worse off now than at the beginning, there has been so much yo-yoing and every time I've had a flare I've ended up higher than before the reduction. At the beginning of the year I was on 22.5 and couldn't get below that for a year, at one point I was on 30 and have tried to go down by 1mg a month. If I reduce and feel fine I stay there for a month at least before trying again. If I reduce and don't feel well or feel worse after 5-7 days I go back up to the previous dose. Sometimes I've had to take a few extra for a few days if in the meantime the inflammation has accumulated (see PMRPro's dripping tap analogy). I'm now down to 13 and will see how it goes. Winter is coming and that often causes flares for me so I'm ot going to push it. It is amazing that I am now able to reduce and I hypothesize that it could be the Hydroxychloraquine is working and/ or my PMR is going into remission. It could be burning itself out finally or the HCQ might be working, no way of knowing. To conclude, do what is best for your body and don't be pushed into reducing just for the sake of it.
Definitely agree with PMRpro that your taper has been fast. It's not fast when compared to use of pred for other conditions, but it is fast for PMR. The reason is because it is our pain control, not just a short term medication to deal with some sort of acute condition. PMR cannot be cured, but it nearly always will go into remission over time, and there's no way to tell how long that will take for any individual. In my case I tapered without incident over two years to a really low dose, and then stuck there for literally years- so much for my inital optimism! Fortunately side effects are virtually non-existent at very low doses.
Rule of thumb: taper by no more than 10% of the dose, and usually not more frequently than monthly, even slower and in tinier doses the lower the dose. We are all different and can only share our own particular experiences, but I'd say generally speaking, something PMRpro said years ago is sage advice indeed: "It isn't slow if it works".
I am now down to 12.5mg pred. May 2023 on 20mg. Plan to reduce to 10mg October sometime, then stay on 10mg for several months, before very slowly tapering thereafter. Reading most posts & replies on this forum since May has absolutely convinced me to taper slowly. And even more slowly from 10mg. And extremely slowly from 6mg.
I am most concerned about reaching adrenal stutter and getting through this in the best possible way.
I have no anxieties being on a low dose of Pred for the long term, if it is necessary. So far I’m managing this PMR quite well, especially with the support and information gleaned from this forum, thank you all. My PMR journey continues!
Once you get to 10 mg you should ask for 1 mg tablets, then you can more easily taper to lower doses. I believe people often pause at 5 mg, where the risks from pred are much reduced, rather than at 10, which is still a "moderate" as opposed to "low" dose. If your PMR symptoms remain controlled, you could consider a slow taper method from 10 mg which would help you taper in 1 mg steps each month or six weeks. Just a suggestion.
I plan to obtain 1mg tablets when I’m on 10mg/day, then taper down by 0.5mg for at least 1 month until 7mg/day and then down by 0.25mg/day for 6 to 8 weeks steps. Slowly slowly!
I would recommend that you get some 2.5 mg Prednisolone if you intend tapering by .25 mg. You can cut the 2.5 to give you 1.25 . Mixed with 5mg and /or 1mg it is easy to get any dosage you need.
I will consider my options when I see 10mg working well for me, after a week or so. I intend remaining on 10mg for several months, so plenty of time.
I would like to know the various sizes of Pred I can get here in the UK, so I can plan my tapering from 10 down. I am aware of 5mg & 1 mg, a 2.5mg is new to me, any other sizes anyone? Thank you in advance!
I am in the UK and readily get 5, 2.5 and 1mg tablets. The 2.5 have a score on them so it is easy to cut them in half, also they are a yellowish colour so easily identified.
No, for some reason the company that produces the 2.5mg plain pred decided to make them yellow! Coated pred 2.5mg tablets are dark brown, look a bit like brown Smarties ...
Okay. I thought it was usually 5 mg. Can't imagine doing that myself, but there you go! By the end of my first year I was at 3 mg, and didn't have a real flare until nearly five years later, therefore unrelated to previous tapering. Would have meant an awful lot more pred over all and I'm sure wouldn't have been good for me.
That I can understand. Now that I no longer need the experience, in my case I'd say I'd have done well staying without taper attempts at 3 mg for some time. Pity it's such a idiosyncratic illness, one where by the time each of us knows what's best for us it's too late!
I have other health issues which are in good order and Flu & Covid jabs arranged and significant health appointments early new year, so all things considered I do not want to approach adrenal stutter, in this mix over those months. Steady as it goes for my PMR is my decision for now, obviously I will assess this as I go along, while monitoring my BP & Diabetes type 2 & AF & diet, however I doubt any significant adjustment to my plans.
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