A message of hope

There are several members of Club Zero over on the northeast of England support site's forum. I tell you to come on over - but at the moment it is playing silly what'sits and it is next to impossible to use for some reason!

Two ladies who have had it twice are there, a couple of ladies for whom it took just a couple of years (one with PMR and one with GCA) and a few with sort of 3, 4 or 5 year histories. And of course, the founder member Ragnar, our Swedish gentleman who worked out the first slow reduction for lower doses!

I often say, if you have to have a chronic disease then PMR isn't too bad. It may be a pain in the butt but it doesn't kill and can be managed reasonably well most of the time. There's far worse to be found.

Hello Padada and welcome!  It is generally expected that we should feel around a 70% reduction in our pain levels within up to a week or so of commencing steroids, sometimes within hours.  Some lucky people then go on to have a pain-free journey as they reduce their dose but that is by no means the norm - in fact, very few people achieve complete resolution of their pain.  I was never completely pain and stiffness-free throughout my years on steroids but they did allow me a reasonably good quality of life.  Whilst on steroids, I never took additional painkillers, having tried both Paracetamol and Ibuprofen in my pre-diagnosis months without much success - they still left me bed-bound.   Once on steroids, if I suffered what was an obvious flare with raised blood test markers, I would increase the dose back up.  However, if a worsening of pain occurred immediately following a reduction then I would 'hold fire' on increasing the dose for up to a week or so to see if my body adapted to the reduced dose.  When newly diagnosed it is difficult to tell the difference between what is a true flare and what is steroid-withdrawal pain but it does become easier for us to recognise the difference as we become experienced in dealing with PMR, and listening to our bodies.

So to answer your last question, only the very lucky few have 100% relief from Pred - to experience a certain amount of pain and stiffness, especially in the earlier part of the day doesn't mean the treatment isn't working.

Hello padada, it seems odd welcoming others to this site, but welcome anyway and good luck with your PMR recovery.

i was diagnosed with PMR dec 2013 although I had the symtoms since the September. Like most PMR sufferers I was so stiff and in so much pain pre diagnosis but within 4 hours of taking my first dose of 15 mgs of prednisone nearly all stiffness and pain had disappeared. Then within the week I was almost back to my normal self. Having said that I still occasionally get the odd twinge in the hips, shoulders and neck but normally that goes within a few days. The pain resurfaces normally when I have a gold, or cold sore coming and I guess my body is saying that it has rather too much to cope with at the moment! 

I have suffered 2 flares although I count it as one, because I had a flare up, in response upped my dose, the pain went away and so stupidly I reduced my preds again within 2 weeks of the 1st flare up. I then had to up my preds back up to 10mgs and I'm still on them and have no intention of reducing them for a total of 6 weeks or longer if I feel i need to. 

The secret is to not reduce too quickly, no matter what your GP says. The preds must control (not the right word to use) the inflammation, not the other way round. The PMR will burn out or in some cases fizzle away for along, long time and no matter what drugs they give us it will burn out when it wants to and not when a Dr demands it to by lowering the preds. 

Now you are on preds, the only drug that can mask the inflamation (because it's always there) is prednisone. Some drs if they feel you are taking too long to reduce will attempt to introduce a drug called methoxidrate, Spelt wrong! There is great discussion as to wether this drug has a place when used with PMR. My opinion is NO. It is not recommended in any of the research papers so I am going to steer away from it for as long as I can.

i have on very limited occasions taken paracetamol if I have a headache or I've overdone things, if the pain goes away I tell myself that the pain I had was something other than PMR pain. But normally I know as PMR pain is very specific and it's a pain that I never experienced before PMR, so I always attempt to gauge my additional pain with the PMR pain as a reference.

as you say it is not a good idea to take any additional anti inflammatory drugs, eg, ibuprofen, they definitely are very bad for the stomach.

i also take calcium, magnesium, vit c, d and a b complex just yo help things along! But the secret to 'recovery' is taper slowly, slowly. 15 mgs, 6 weeks, 12.5 mgs, 6 weeks, and 10 mgs, for anything up to a year. Good luck, christina

Thank you christina for your wonderful answer to me.  I am like a sponge soaking up all the good information and hints and experiences I can, so that I can use the knowledge to be encouraged and to possibly not give up  I didn't have that miracle relief, but Eileen said it took her some time to get the relief too.  I wish I were one of the miracle kids, but glad you were.  thank you again for taking your time to answer me.  If you think of anything else you do that helps , let me know. 

Oh, sorry for the second message , but I have read about the 15 mg for 6 weeks, 12.5 for 6 weeks and 10 for up to a year.  I do have a question about it that I have not asked anyone about.  Do you go from 15 mg directly to 12.5 or does the protocol call for a taper down to 12.5?  Same question about 12.5 down to 10 - taper down or straigh away?.  Sorry for the bother.

Hi padada, normally the reductions are just as stated and it's only when you get to 10 mgs that the tapering is really really slow. Some patients however can experience a flare up at the higher doses so will have to taper down through the 15/12.5/10 slowly but I understand that is quite unusual. 

When you are unsure of anything it is vital that you ask the members on the forum. PMR despite what the experts say is a tricky little bugger and throws all sorts of problems our way and it's often only by asking others who have experienced this or that also that we find that that new pain here or there or the cold that won't go away or the......well you get the picture is quite normal. I don't mind admitting that PMR scares me senseless, I just want it to go and for me to have my old life back again. I don't want to be a patient whereby the condition hangs around like a bad smell for years and years. I don't want to suffer any long term side effects from the condition or the medication. But the reality is I could be one of them and I just have to put up and shut up! That's life and although this unpredictable, frustrating condition scares me I could have a condition or illness that's a whole lot worse. We all share our experiences and keep each other company. Christina

It's the pred that scares me senseless!  Having been on it for 3 1/2 years  I hate it!!  It has caused osteopenie, liver problems and kidney problems (all mild, however) and if I have to put pred up 1/2 mg it bothers me.  I'm on 6 mgs at the moment, but in all the years I have never been completely pain free - I just try to grin and bare it.  Most of the time I do, but on some days it really knocks me out.

The Bristol protocol would have them reducing directly from 15 to 12.5mg. Most people manage that but we have noted there are quite a few people who struggle with that size of drop. So on the forums several of us have fiddled about a bit with our own reductions and found that 1mg drops are tolerated much better: some people have made the drop smoother by alternating one day of the old dose and one day of the new dose for a couple of weeks before finally dropping to every day the new dose. 

American rheumatologists warned in papers several years ago that no drop should be more than 10% of the current dose - at 15mg that means not more than 1.5mg at a time. It certainly helps a lot. There are some people for whom even that is too much of a drop from one day to the next. That is why several of us worked out our own reduction plans and have shared them on the forums.

The basic problem is that in most illnesses where pred is used it is used sort term to reduce symptoms in a flare in addition to the normal medication - in PMR it is the normal medication and you are looking for the lowest dose that will manage the symptoms not trying to get the patient off it totally. Many doctors, including rheumatologists, don't understand that or have the idea that it requires just a low dose so are desperate to get everyone to that low dose that they believe is enough and safer.