steroid reduction setback

[Crosswordsolver]

i was diagnosed with PMR beginning of June and started on 15mg Prednisolone which immediately brought about huge improvement to the point where after a couple of weeks I had no pain. After 4 weeks, and with inflammatory markers down from 70s to normal, GP reduced dose to 14 mg. I found no deterioration at all. After a further 4 weeks (and inflammatory markers still on normal) he told me to reduce to 13 mg. All was fine for 2 or 3 days then I started to experience return of pains from pelvic area on walking. Shoulders, which had also originally been bad, remained fine. Pelvis got worse over the next week, though still bearable and certainly nothing on the scale of the original problems. After 10 days on the 13 mg I decided to go back up to the 14 mg. Perhaps I should have stuck it out? Anyway, now on 14 mg, 5 days later things have improved slightly but are not back to how I was last time on the 14 mg. Should I stick on 14 mg until next blood test and GP review in 3 weeks or go back up to the original 15 mg? The pain is perfectly liveable with, it’s just reducing the amount I walk (half an hour to an hour a day with the dog). I haven’t been overdoing things or had stresses. I don’t am concerned that after a promising start on the steroids I am already finding problems reducing, which I thought would be more likely at the lower levels. I appreciate this is a small problem compared with many others (and that this is just the start of a long journey), but would be grateful for any advice so that I don’t make things worse and risk a flare.

[DorsetLady PMRGCAuk volunteer]

No point in sticking it out except for first few days after reducing when it’s likely to be steroid withdrawal. However if it lasts longer than 7-10 days then it’s probably too low a dose.

So as you did, firstly back to previous dose…and hope that helps. I’d give it another week and see if things improve. If not then up to 15mg.

You should be able to reduce 1mg a month, but you may be a patient that is more susceptible to change -so perhaps only 0.5mg a time… but are you really sure you haven’t done too much?

As for bloods -they should be reduced, that just shows the Pred is doing what it should - but they can lag behind symptoms - and symptoms are the key.

Hope you get back on an even keel.

[Crosswordsolver in reply to DorsetLady]

Thanks, that's really helped me make sense of it. Didn't think I've been overdoing it but had been walking more as the pains reduced at higher dose so it's possible. Will see how things go over next few days then follow your advice if no better. Appreciate your help.

[DorsetLady PMRGCAuk volunteer in reply to Crosswordsolver]

Easily done but you have to remember at the beginning Pred can give you a false energy -more in your system than you would normally produce.

The art is to work what you can do without upsetting your PMR and that takes time for you to know your own illness compared to activity compared to Pred dose. Not as easy as some would have you believe -but you will master it!

[Crosswordsolver in reply to DorsetLady]

Thank you for your encouragement.

[greencyclist62]

I was also diagnosed in June this year and started on 15mg pred, for me this was too much and I could only stay on this amount for 2 weeks. I've gradually reduced to 9mg and then tried to reduce to 8mg as the doctor prescribed. This week I have got my symptoms back (sore neck, pain in hips and shoulders, tingling in feet.

After reading some of the posts on here I realise that I have tried to reduce too quickly (thank god for this forum), so now I have increased to 10mg to try and get things back on an even keel. I will try this for a few days, then see if I can get back down to 9mg. It seems to be a balancing act.

Hope you're feeling better soon.

[Crosswordsolver in reply to greencyclist62]

Thank you, it's really useful to hear of others' experiences. Agree on the balancing act and on how helpful this forum is!

[PMRpro Ambassador]

My suspicion is that the starting dose of 15mg was only just enough to start clearing out the accumulated inflammation as well as dealing with the daily dose of inflammatory substances so it has left you with a very narrow margin to reduce the dose against before it all overflows again to use our dripping tap into a bucket analogy. If you can pretty much empty that bucket with the starting dose, there is more space to get to a lower daily dose - so as you are lowering it, the disease activity is also slowing slightly too. But the first few months seem to be critical in getting to that balance and being able to achieve symptom relief with a lower dose.

[Crosswordsolver in reply to PMRpro]

Thanks for helping me see the bigger picture. I think I was so pleased at the initial good response to the steroids that I assumed it would continue like that at least for the first few months as I reduced the dose. More patience needed Ican see now.

[PMRpro Ambassador in reply to Crosswordsolver]

I had a miracle response to 15mg - but it took me over 4 years to get reliably below 10mg. Some people need more pred than others - there are various reasons for that but a lot of doctors seem blissfully unaware of that and plough on with a standard reduction.

And yes - if you don't learn anything else with PMR, it will be patience!!

[Petalworker]

Hi, first time I’ve joined in on here but I’ve been following for a long time and have found all the info and advice so helpful.

Crosswordsolver, reading your post, I felt that it could have been me writing it. I just thought that you might like to know you’re not alone in struggling with the initial drop. I didn’t expect that to be a problem at all, I thought the difficulties with tapering would be further down the line, how naive was I!

I was diagnosed in April after months of struggling on, I told several GPs and health professionals that I thought I had PMR but they all dismissed me saying that I was too young. Started pred on 15mg, went to 12.5mg after 3 weeks at GPs insistence even though I didn’t feel that I was quite ready. Stuck it out for 3 weeks but it was a disaster so I went back to 15mg. GP said go to 12.5 again after 3 weeks but I told her I was trying 14mg which she agreed to. Even this small drop was too much and so I’m back on 15mg for 6 weeks and GP will speak to me at end. I've suggested that maybe I need a higher dose but she won’t have it.

I’m feeling very disillusioned that I’m failing at the first hurdle. I do think it’s because I’m doing too much work wise but I can’t do anything about that at the moment. I have put my business up for sale because I know that ultimately I won’t get better if I carry on the way I am.

[PMRpro Ambassador in reply to Petalworker]

Hi and welcome!

Yes - the age thing and dose are 2 major problems. Younger patients do often seem to need a bit more at first - and unless you start right, the follow-on is difficult too.

Where are you? Can you get to Rod Hughes in Chertsey, even for a single appointment, to get a confirmed diagnosis and treatment plan since you do have a GP who recognises PMR but needs a bit of education.

[Petalworker in reply to PMRpro]

Thank you PMRpro, that is a good idea, I’ll look into it. I am in the South of England so it’s doable.

[Crosswordsolver in reply to Petalworker]

Hi Petalworker

It’s helpful to know that others have had a problem with the early reduction stage. As you say, it is disheartening to feel you are not on an upward trajectory, even if it were a slow one, at the start. My GP said at the beginning that there would be ups and downs with the tapering - I just hadn’t expected that to be so soon! I am finding the advice on this forum very helpful and reassuring as the experienced members take the time to explain the likely cause of the problems and suggest the best way forward. You have had a very stressful time even getting to the stage of diagnosis, all while you must have been struggling with the pain as well as having to cope with work pressures, so it’s been very tough for you. I hope you can get the right support to get things back on track as soon as possible.

[Petalworker in reply to Crosswordsolver]

Thank you Crosswordsolver, you too.