77yr scuba diver till 2012,PMR July,20pred,35hrs/36days,'normal'.walking 2xdaily,swim2x wk,Dr advised 20/15 alternating,back to PMR and 20.

Rhemy,gave BSR red.plan,no advice,Dr commenced a plan,1mg red/weekly.19mg ok,18 ok

17 fingers tendon pain,16mg now 2 weeks ,tendon pain both feet/shins,swelling but all lessening,leaving numb feet,wrist twinges.weakness in lower limbs out of chair.still walking/swimming and feeling good after-as for years.Do I press on,use Ibupro,but extend/or decrease

further or go back a couple of mg,then come forward say 1mg red/2weeks.Appreciate all

different,but general advice most welcome. Thank you all for your experiences/help till now .Scuba Diver ,John

[Polywotsit PMRGCAuk team member]

Hello John. This all sounds quite complicated! It sounds as though you are reducing very quickly. To take 20 and 15mg alternate days is a massive swing. A rheumatologist who is researching PMR and who spoke at the international symposium says that the way he gets patients to reduce is to introduce the lower dose just one day a week, for a week or a fortnight. Then two days a week, then three, until the patient is on the lower dose full time. Then, after another week, start reducing again in the same way., , This is obviously a slower taper, but also much gentler, because it gives the body time to adapt to the lower dose. For pain relief you should be taking paracetemol or a paracetemol combination pill, and not taking ibuprofen or other non-steroidal anti-inflammatories as these interfere with the action of the steroids. So in effect you need more steroids to get the same effect.

Be aware that the steroids seem to be sensitive to a person's weight, i.e. the lighter weight people tend to be able to manage on a smaller dose. So if you are a big beefy bloke with a lot of muscle mass, you may find you need a slightly higher dose than somebody who's a little nine-stoner. On the other hand, your physical activity will be keeping you toned and also be good for your circulation system, which ought to help you beat the PMR faster. But as you say, we are all different.

yours

Kate

[Hidden in reply to Polywotsit]

Hi Kate,

You have raised the question regarding the use of ibuprofen when helping to reduce dosage of steroids. My GP would be in complete agreement with what you say as he does not like me taking them at all as he worries about the effect they might have on my kidneys, and let's face it, many doctors think that long term use of them is dangerous for the stomach, along with pred. However, my rheumatologist, who I saw yesterday, has no problems with me taking them at all. She says that as long as I keep the doses low and make sure I protect my stomach, then I should be OK.

What I wonder is why does ibuprofen interfere with the actions of pred. How does it interfere? What is the mechanism?

I have used ibuprofen to help me for a long time and it has seemed to work very well. I know it has risks, but unfortunately, I cannot take paracetamol as one dose makes me feel as if I have been poisoned.

Pats.

[Polywotsit PMRGCAuk team member in reply to Hidden]

Hi Pats

Good question! I was told this by a rheumatologist and I understand that the steroid enters the genetic material of the cells so I assumed it was something to do with creating a barrier. But this was an explanation I constructed for myself (like you do sometimes when there isn't another explanation). So I reckon it's a good one to put to our medical advsory panel! I'll get onto it.

[Hidden in reply to Polywotsit]

Hi Kate,

Thanks, I hope we find the answer as many of us wonder about the dangers of taking NSAIDs, and often doctors do seem to give such conflicting advice.

Pats.

[Hidden]

Thank you Kate, I am 15 stone,muscle not quite as bulky,big boned,but swim is 40 lengths

crawl.and your information I feel better already- will try increasing pred back to 18mg=+2

let it settle down,see Christmas through and then follow the alternative plan you have explained.Trouble is, I take Allupurinol for Gout-years, thyroxine-years for under active thyroid gland-been reduced because of Pred,and Paracetemol gives me a rash! willing to try again-is there an alternative?

Regards to you Kate,John

[Pipistrelle]

I'd follow the BSR reductions, which are quite clearly indicated on the BSR information sheet on PMR -- not doing 1mg a week, which to me sounds too fast. However I am not sure I understand your post completely but sounds like you started at 20mg in July and went down to 15mg by alternating days, right away? And then started 1mg weekly reductions? Maybe you can clarify this -- but really,I'd stick with the BSR recommendations which are not fast dropes and also indicate you should stick at one dosage at least 2-4 weeks before dropping gradually. By the time you get to 10mg you want to be on 1mg reductions every 4-8 weeks or more, depending on how you do.

I'd stick with the exercise -- I found it really helps even if a bit stiff.

Also be aware that the majority of us deal with some daily pain, and are not pain free on steroids. I used to be very stiff and sore for the first few hours in the morning until I got below 7.5 mg or so. It's a balancing act, really.

A heating pad can help, or a bath. Occasional ibuprofen is likely fine but long term daily use can cause problems. You can take a stomach protecting medication a half hour or so before taking ibuprofen to help cushion the impact on your stomach. Your doctor should be able to advise.