Tapering problems

[Paul76]

I always seem to be having problems when tapering. I cannot get below 10/11mgs without experiencing a lot of pain. I’ve never been pain free but this becomes unbearable. Even when I use the flare protocol for up to 2 weeks it seems that the PMR just gets out of control. My GP thought that something else might be going on as my lower back pain was particularly bad. I’ve now had an X-ray, an MRI and a physio consultation and all have confirmed that nothing else is going on so GP, and me, have agreed that it’s all PMR. At this time I had managed to get to 11mgs using the DSNS method. Luckily enough I have found the 3rd GP in my practice who is very understanding and is not pressing me to reduce. I’m off to Spain soon for 4 weeks and GP has increased me to 15mgs for at least 6 weeks. I’m on week 3 and think I’m feeling small improvements so fingers crossed. I’m now making my own anti inflammatory drinks and going to aquafit classes 5 times a week. I probably have to rest afterwards but feel so much better having done the class. I’m just feeling very frustrated at the moment as I don’t seem to be moving forward. I’m now where I was 17 months ago but I have learned that we have to be patient. This forum helps so much and I’d like to thank everyone involved.

[DorsetLady PMRGCAuk volunteer]

Would say you probably never got things fully under control right at the beginning -which is why you have stuttered so many times. 15mg isn’t always enough, neither is 3 weeks.pity you previous GPs didn’t realise that!

Hopefully 6weeks at 15mg will do it this time - but just be aware holidays put you out of normal routine so don’t get too gung ho even if you do feel a lot better. Know you go regularly but still be mindful.

[Paul76 in reply to DorsetLady]

Totally agree that it has never fully been under control right from the start this time. I now feel that when I see my GP again, and if I still have pain, she may be receptive to increasing the dose if necessary. I just need some respite from the pain. I have no great plans to do much on holiday except for some gentle and short walks and that’s about it apart from a great deal of reading in the sun. My walking is not good at the moment so I’m not going to force it. Will keep you updated on my next GP visit.

[DorsetLady PMRGCAuk volunteer in reply to Paul76]

Please do..

[PMRpro Ambassador]

You are not tapering the dose relentlessly to zero to get off pred. You are tapering the dose slowly to identify the lowest effective dose, the lowest dose that manages the inflammation that is shed every morning, a process called titration. In most drugs they start low and increase slowly to find the lowest dose that manages the problem. With pred that doesn't work, you'd be forever playing catchup as the inflammation builds up. The pred has cured nothing - it has cleared out built-up inflammation if you were pretty much pain-free but that is topped up on a daily basis and so after the springclean you still need daily dusting to manage the ongoing inflammation.

If you reduce to too low a dose then you do lose control of the PMR symptoms and when you do it again and again it becomes ever harder to reduce the dose again. It took me 4 years to get reliably below 10mg. Everyone needs a different amount of pred for different times - there is no standard disease activity and everyone responds slightly differently to pred, Some have more receptors that pred attaches to to be able to work, there are a few different mechanisms that actually cause the pain and how they respond to pred probably varies too.

You simply need a bit more than another patient - and you can't force it. If you repeatedly flare at a specific dose, that is the dose you need for now. It doesn't mean you won't get lower, but not yet. Yes, you DID get to 8mg last time but it was obviously far too low then if you had a massive flare. However - disease activity also varies over time and you can have a flare without changing the dose. I get a moderate flare every 2 or 3 years, it is annoying but it can be a feature of one version of PMR, I think especially the version where our markers aren't any help in identifying what is going on!

[sidra1968]

I can relate, some of us just do not taper easily at all. I got to 13 mg finally after 1.6 years and flared last week..so on 18 mg for at least a few more days. Finally seems to be working (no jinx please by typing this). You'll be ok!

[AtopicGuy]

Thank you for filling in your Bio/Profile. It gives excellent background.

In addition to what's been said, you might try to help the steroids work by easing off the exercise for a few weeks, while you are on a higher, steady dose. Inflamed muscles do not take kindly to being worked hard. Rather than make them stronger, it just makes them more inflamed; and that undoes the work of the prednisolone. Have a good trip.

[Paul76 in reply to AtopicGuy]

That’s a thought and timely advice as I’m going away for 4 weeks. There will be no aquafit classes but hopefully some short gentle walks. It will be interesting to see how things develop