Tried reducing to 12 mg preds but as most times am back in pain again .Know should reduce by half even less per mg but am desperate to get off preds . Feel like naughty girl in class 😔Anyhow will up to 13mg tomorrow ,but as co codamal doesn't help withdrawal pain is there some other pain relief I can ask doctor for on Thursday when I see her re-result for last blood test yesterday .
Pred is the pain relief in PMR. Although some doctors say that NSAIDs can be used in mild PMR and I know one or two people who say they help a bit, a guideline I read yesterday says NSAIDs have no role to play in PMR. They never did anything for me in the first 5 years of PMR which I had to get through without pred as I was told I was too young, no raised blood tests etc etc. One lady was managed using morphine - but she had other problems and the pred caused life-threatening side effects for her. NSAIDs have nasty side effects and morphine is a very heavy duty drug which has a lot of side effects too.
Everyone is desperate to get off pred, don't think that because we all take it we like it. You have a choice - acccept a high enough dose of pred to get the inflammation under control to start with and then a dose that is high enough to keep it controlled, or accept the pain and disability of PMR until it burns out and goes into remission - which might be 2 years or it might be 10 (I've had PMR for 10 years altogether). In the meantime there will be uncontrolled inflammation in various parts of your body, damaging blood vessels and putting you at higher risk of vascular disorders, and also increases the risk of some forms of cancer. Controlling that inflammation with pred does reduce that risk somewhat, other pain killers won't do that even if they worked for the pain.
The only way to manage the steroid withdrawal pain is to reduce in very small steps - as we keep saying. The only realistic way to manage PMR is with pred - if there were a reliable drug that did it without the risk of even more side effects they would use it. Methotrexate is touted by some - but the most recent opinion admits it has no real role in PMR. The original work was very ambivalent - one study said it worked to reduce the pred dose, one said it didn't and one didn't know. It doesn't mean you stop taking pred - they are used together. It probably helps in patients who have late onset RA as well as PMR or who have LORA and not PMR, they present similarly and about 1 in 6 patients given a PMR diagnosis has it revised at some point.
Carol, I would not take the risk of adding Ibuprofen or the like to your Pred as it could possibly harm your stomach. I far preferred to stick to the right dose of Pred that controlled my inflammation than add another pill to the mix.
I took a small daily dose of Ibuprofen and Paracetamol to try and control my pain in my bedbound days with undiagnosed, therefore untreated, PMR. It really did nothing to control my pain, but I was advised to take it just to get me to hospital rheumy appointments by ambulance and wheelchair for various scans. After all those months on Ibuprofen, I was diagnosed with chronic kidney disease - now I can't prove that Ibuprofen was the cause (although the liver and kidneys are a documented risk), equally it might have been the untreated inflammation lurking in my body for such a long time. Although whatever was ailing me at the time spontaneously and slowly resolved in just under a year, it wasn't to last. A couple of months later all the pain returned together with additional symptoms, and I was eventually diagnosed with both PMR and GCA and started on 40mgs of Pred. It is quite likely that because the inflammation of PMR had been allowed to course through my body without treatment during that first horrid year that I eventually succumbed to GCA.
So you may be wise to ensure that you take sufficient Pred to control your present inflammation rather than add in a painkiller or NSAID such as Ibuprofen. Having said this, there are a few PMR patients who find that paracetamol has helped them through the first few days following a dosage reduction; however, there are people on another PMR forum whose stomachs have also been severely affected by Paracetamol.
Like you, I'm sure most of us empathise with the feeling of needing to get of Pred asap. But remember, untreated inflammation is the enemy, NOT Pred.
It seems to me thst if we come off Prednisilone before the inflammation has gone, we might as well not have taken it in the first place and will be back at the beginning again with all the pain and stiffness. I understand that some people have an even worse experience when this happens. This terrifies me. I, like I imagine all the rest of us PMRers, had to come terms with accepting Prednisilone as our saviour and not as the enemy. Hard at first.
Personally, I see the attempts at reduction
more as tests to see if the inflammation is going down and so I am one step closer to it burning out, than as attempts to get off steroids.
Getting to a lower dose then brings the added benefit, hopefully of being a step closer to losing the horrible fat face and neck etc that the 'saviour' has brought me!
I struggled getting from 12 to 11, gave myself another 6 weeks at 12. Now I am going for 11. I took 11 on Sunday and 12 Mon and Tues. Plan to take 12 the rest of the week and have 11 sun and Mon next week and so on. No pain so far, this was not the case last time so I an hopeful that I am improving. Sadly it is in charge, not me.
Hope this helps
Sheila
Carol - there is very little I can say to add to whats has already been said. It's down to an attitude of not letting the 'saviour' become a 'devil', It will get better BUT it may take time - don't be to keen to get off preds you are very unlikely to get all the side effect and you may not get any - be positive! How long have you had PMR? Best of luck
Thankyou all .i have been taking paracetamol and codeine for years hoping it would relieve face pain neck and shoulder . Some times it helped but no one ever a did blood. Test until last November.Take on board what you have all said .
i am surprised with the difficulty of withdrawal .
when I first had face pain a lot of ideas we're bandied about and being the late 70s Ativan a nasty little tranquilliser of the time was thought the answer to every thing so I was put on it for 10years and quite a high dose .A different doctor took me off of it in two weeks as you can imagine the result was very negative .I was then put on antidepressants for 2 years .So I am aware of to quick a withdrawal and scared as well ,certainly wouldn't want to be like that again .Iwasnt really aware I guess what prednisalone did .I only new my husband was put on it while he had a stem cell transplant,and working at a vets it was used to help illness for some of the animals .i have gone back up to 13mg again today .Blood test results tomorrow ,so as long as that hasn't gone back will stay another week and drop half mg every other day until I am down to 12mg and stay put at that for a while .Have inherited a pill cutter when I retired so can even shave of less .thankyou all for your kindness in getting back to me Carol
Just a thought - try to space the reduction by every other day not 2 in a row as you suggested in 'and have 11 sun and Mon next week and so on' Helps to even the dose out.
Good idea John. Will do that next week. I think I may have done this some time ago with an earlier taper.
Simple spacing of the lower dose - see posts 4 and 5 of this thread:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
I don't mess about with looking at things on a weekly basis, I just reduce the number of days between each new dose day steadily.
Sorry but is that not what I was planning to do? Next week I will take 11mg 2 days running? Am I misunderstanding it?
I have misunderstood, haven't i? Going to work it out now
Thanks Eileen - must remember to direct to the link which explains it a lot clearer!! Gets slightly confusing when the lower dose is more that the higher in the third/forth weeks. I know what I mean!!!
Oh my goodness! Studied it and put it on the calendar, so NOW I understand. I looked at this months ago when the brain fog was terrible and thought I'd got it. What tapering I have done so far has been ok but I will follow this plan for this one which seems more problematic. Sorry to have been so dense
thank you so much John for making me realise I had the wrong end of the stick... 
It depends on the scheme, I think the other one does it more your way but I would have to go onto a different computer to get it so I'm very lazy and just use the link on here. I found deciding which days to put it was too complex for me...
You will have two days of the new low dose together, then 3 days and so on as you go towards every day new - if that makes sense.
Sheila, not "the wrong end of the stick at all". I understood exactly what you were talking about 'cos that's the way I reduced - increasing the number of consecutive days on the new dose whilst at the same time reducing the number of days on the old dose. It worked for me and I came off steroids approaching 3 years ago now. It's just another way of the slowly slowly approach to trick your body into not noticing the steroid withdrawal. This all came about when some years ago a gentleman in Sweden posted that he could never reduce below 5mgs until he tried reducing to the new lower dose by1mg just every two or 3 days at first. I took it even more slowly, but reducing below 5mg in just half mg decrements. It became known as 'Ragnar's regime' and in one form or another this slowly slowly approach has worked for all who have tried it - we are blessed to have found Ragnar!
Thank you so much MrsO! I was feeling very dense...
Have copied that reduction down will speak to doctor tomorrow and hope that we can agree on doing it that way only sounds good to me sound nice and steady and at least you can stop at a stage if you need to hold for a while .Will have to copy to Callender though as will not remember without writing it down .