PMR....

[Zellamze]

I've been on steroids now for three months starting with 15mg. I'm now down to 5mg but unfortunately I've started to get massive pain in my hips and shoulders. I have also lost my taste and smell. I feel really upset. Has anyone els had this?

[PMRpro Ambassador]

I'm afraid you are not going to like what I'm about to say - because you have obviously not been told the real nature of your illness. You have reduced too far and far too fast. This is not a one-off illness that you hit with pred and stop taking it.

You are not reducing relentlessly to zero - the autoimmune disorder that causes the symptoms we call PMR continues to be active for years - not weeks or months. In reducing you are looking for the dose that manages the symptoms as well as the starting dose did and that is your guideline. You need to reduce slowly, preferably not more than 1mg at a time, staying on each new dose for at least a month to be sure it is still enough. When you get to a dose that allows the symptoms to surface a little bit - you stop reducing immediately and go back to the last dose you were well on. It doesn't mean this is the lowest you will get to, it just means this is the lowest for now. You can stay here and wait for the autoimmune disorder to burn out which in most cases it does eventually, although it can take anything from 2 to 5 years, very occasionally even longer.

You can try another tiny reduction in a couple of months. You are trying to avoid getting into a yoyo situation with your reduction - overshooting the "right" dose and developing a flare which means going back to a higher dose and then making the same mistake again. 1mg at a time may sound slow - it isn't slow if it works and you have no flares.

Here is an approach a lot of us have used successfully:

healthunlocked.com/pmrgcauk...

and which is being used in a clinical study.

If your doctor is unreceptive to being as slow as this - then show them this paper:

rcpe.ac.uk/sites/default/fi...

written by a top PMR group in the UK to help GPs manage PMR better on their own. They recommend taking 3 months to get from 15mg/day to 10mg /day and then keep their patients at 10mg for a year - they find this reduces the rate of flares from 3 in 5 patients on more standard reduction plans to 1 in 5 with this. Ours above reduces the flare rate even further.

Unfortunately, loss of smell (and hence taste, they are so closely linked) is an unusual side-effect of pred. I have come across it before - and I really sympathise because it must make eating such an unpleasant experience.

[lucy65 in reply to PMRpro]

Thanks so much PMRpro for sharing this and for all the wonderful advice you give to all on this site. I noticed the attached paper was written by V Quick. The rheumatologist who confirmed my diagnosis in March at Luton & Dunstable hospital was called Vanessa Quick and seemed very knowledgeable on PMR so I'm wondering if this was jointly written by her? At my point of diagnosis by her I was adamant I wasn't taking the steroids but reluctantly agreed to take them for a week! The rest is history ............and am now following your tapering method and am just in the process of reducing to 12 from 15 and I'm happy with progress. I was due to see V Quick for the second time in June but have had a letter to say due to a change in her availability I will be contacted to arrange another appt. If this is the same V Quick who wrote this I hope the change in availability doesn't mean she's left. I would rather hold onto my PMR expert rheumatologist!

[PMRpro Ambassador in reply to lucy65]

Yes - I know she'd moved to that sort of area from Bristol, presumably working her way through her speciality training. The Prof Kirwan who was co-author is now retired though still active in research. If you are lucky she is only on holiday - I do hope you get to see her again. If you do, do tell her how often we talk about her paper!

[lucy65 in reply to PMRpro]

Oh it sounds like it must be her then. I did think she was very good at the time. I do hope she is just on holiday and that I get to see her again. If I do I will of course pass on your message! I will keep you posted.

[DorsetLady PMRGCAuk volunteer]

Hi

PMRPro has said it all really. Too fast both on time and dosage. Not your fault - you obviously haven't been advised very well. Unfortunately means you'll virtually have to start again - better luck this time!

[alice1940 in reply to DorsetLady]

Yes too fast , l was on 20mg March 20015 and now on 5mg no flares ( touch wood ) just a few niggles when that happens l stay on the dose l am on a bit longer Alice

[piglette]

Who on earth suggested you reduce that fast? As the others say you need to be careful and take it slowly, you do not want to start yo-yoing your dose if you can help it. Hope you feel better soon.

[HeronNS]

Do you remember what dose you last felt well at? Maybe, just maybe, you won't have to go all the way back to 15 mg. But whatever that dose is, do as PMRPro says and stay on it for a month to make sure the inflammation which causes the pain really has been cleared out before attempting a new, slow taper.

Using the slow method, plus other strategies to improve my general health and wellbeing (not least of which is stress avoidance), I was able to reduce to 5 mg from 15 in about nine or ten months, which is, truth be told, considered a little bit fast by many on this forum. But at my current level (4 mg) symptoms are well in check, side effects are as good as nil, and even my doctor is happy with me. Could not have got here without using the dead slow nearly stop method.

[Chespoll]

Hi

I've made a similar mistake, reduced too quickly, and did not stay on the doses for long enough.

I'll be taking the advice from these guys myself from now on.

I saw a consultant on Sunday just gone, and he backed up all of the advice. Also today I picked up a fresh prescription and the Pharmacist asked me about reducing, and his advice was the same.

Good luck.