PMR diagnosis

i explained my split dose decision above to Dave. Thank you for the comprehensive info regarding dosage (how long before reduction etc). My rheumy is non existent, he handed me a diagnosis and an18m prescription for 10mgs daily of Pred. My gp is well meaning, but no expert. She has given me the go ahead to do whatever works for me. Having said that, I am now attempting to navigate my way alone through a foreign land. Yesterday was my first day of 20mgs Pred and i feel much better today already. You are suggesting 20 mgs Pred for 1week. Then a reduction to 15 mgs for 1 month - 6 weeks. Then what? My gp gave me a prescip for 1mg tabs) thank you for the support ... So many questions ... Not enough answers.

You have probably reduced far too fast - as you will see from the Kirwan paper and if you were at a high enough dose you might find the afternoon problem doesn't exist. Still, if you have afternoon stiffness you might be better overall to split the dose 2/3 in the morning and 1/3 in the late afternoon.

In that link I gave you above you will also find a website with vast amounts of info about PMR. You cannot be left to manage your own illness without comprehensive background knowledge which you simply don't have. The PMR and GCA UK northeast support group and their website will start to remedy that, the other forum at forumup also has vast amounts of fixed info and simple explanations - all aimed at the patient not the doctor (not that it would do many doctors any harm to read it!).

I'm answering all your posts together - this new format is a pain in the anatomy!

You start with the dose that controls the symptoms - it should be a bit sledge-hammerish - and then you reduce slowly to find a dose that manages your symptoms. It might be 10mg, it might be 5mg - or it might be somewhere inbetween. You don't just reduce the pred and wait for the symptoms to come back and then go back to the beginning - that leads to yoyo-ing the dose and every subsequent reduction often becomes more difficult and in the causes more problems than you had to start with. 

What causes a flare? Usually reducing the dose of pred too far or too fast. And just because you feel reasonably well does not mean you are cured - the pred can only manage the symptoms, the underlying autoimmune disorder that is making your immune system attack your own body is still active, until it dies down you will need some pred to control the pain and stiffness. You have to do your part - and that means resting when necessary and pacing yourself. I can only dream of using a lawnmower! I'd be in bed for a couple of days! Some people also react badly to certain weather conditions - cold and damp are worst for most people. But basically PMR causes your muscles to be intolerant of exercise, especially repeated actions. You wouldn't expect to be able to mow the lawn if you had flu - your muscles are in a similar state with PMR.

So you have to learn to help the pred - you avoid the things that make your muscles stiff or do them in very small doses with rest periods between. You have to learn to say No, not today and No, that's too much for me at the moment. Once you learn to manage it all you will be able to do much more - but you are unlikely to be back to normal. It is a chronic illness, in many ways like rheumatoid arthritis but without the drug options for managing it and without the joint destruction. It is, however, more likely to go into remission than RA and many people need pred for anything from 2 to 5 or 6 years and are then able to stop taking it after reducing the dose in tiny steps - because dropping in big steps can cause steroid withdrawal pain which is almost identical to PMR pain. But expect to be on pred for at least a couple of years - though not at 20mg for the whole time. Personally I would reduce from 20 to 17.5mg for a week before going to 15mg (you can get pill cutters from any pharmacy and as long as you have plain white tablets you can cut them - don't ever cut coated tablets). If those drops go OK I would then try reducing 1mg at a time - and we have a reduction scheme which makes the drop a smoother ramp rather than steep steps which I'll give you when you need it. No reduction should EVER be more than 10% of the current dose. 

And can I suggest you download/copy and paste the replies you get here or on the other forum if you come and join it into a folder and keep it for referring to. The pred doesn't help concentration, nor does PMR - and nor does this forum now! Everything gets spread about all over the place and it is next to impossible to track something you read a few days ago - never mind a few weeks ago. Having your notes on a piece of paper is helpful - especially when you get a reduction schedule to follow, then a diary or calendar is also pretty much essential as you won't be taking the same dose every day. 

This is enough for you to digest at the moment - but one final instruction: rest, and get someone else to mow the lawn next week! 

Been about two & a half months now on pred.  First at 15 than 20 & now down to 16.  Blood work was done & CRP & EST are now both within normal range, but it seems with reduction wrists & fingers are painful. When you say to reduce 1 mg at a time how long befo

re you can reduce again.  Thngs have gone quite well since the initial flare up & just wondering where I should be dose wise with pred. at this point.

Thanks,

Mary

i truly appreciate your time and commitment to following up with valuable information for complete strangers .. You are a wealth of information! I have gone to the link you provided and printed the article for future reference.  I will take your advice and reduce from 20 to 17.5 for 1 week before reducing again to 15. The Bristal article suggests 15 mgs for 6 weeks, 12.5 for 6 weeks and then 10 for 1 yr. is that your recommendation?  My doctor has known me for years, and oiis supportive and has simply taken my  lead.  I insisted on splitting my initial dose of 15 mgs after experiencing mid afternoon 'discomfort' and reading 'Elliot's' article.  I also initiated the reduction after feeling better, in an attempt to get off the evil drug, Pred.  As for resting ... I am 48 yrs old and work full time for free as a wife and mother of two boys (13, 10) just for fun I do this other thing called working for a living - I am a teacher. Daily Exercise ( yard work, playing ice hockey, boxing included) have always been key to my personal well-being.  PMR has taken so much from me in a very short time ... I am absolutely grieving the loss of my good health and physical abilities. I have much to learn about living with PMR (for how many more years?!) and I must say I am completely freaked out about Long term use of Pred. Until now I haven't taken a pill in my life! I  obviously need to come to better terms with my situation - guess I'm not going to beat this condition by this winter after all! grrrrr I will contue to read and learn and appreciate the support of all those that have travelled this road before me! K

One day at a time I guess! K

Perhaps the hardest thing to learn is that pred is NOT evil. It is your friend in allowing you to have a fairly comfortable journey through PMR without losing too much of your life in the process. Things WILL have to be done differently - and by the way, don't imagine I don't appreciate how much it will affect your life, I am another very young PMR victim, ! was only 51 when it started and for 5 years I had to manage it all with no help as it wasn't recognised since my bloods are boringly normal, in fact very low for my age. Be grateful that you weren't told it was "all in your head" or "depression" or "fibromyalgia" or "your age" but that you were allowed to try pred and it worked - a confirmation it is most likely pred-responsive PMR as opposed to other less pleasant options. Since you have to work in a physically fairly demanding area you will possibly need a slightly higher dose of pred to be able to function well than if you were retired as many people with PMR are - but you should be able to distinguish returns of PMR as you are young and fit. But as Mary says - it does get better, not perfect but better provided you play your part too. I had a friend in the US army school where we lived in Germany who was a single mum - her 7 and 9 year olds were taught how to operate the washing machine and various other items so she could survive her life as a teacher and mum. Time for yours to be taught how to be useful members of a family - it will stand them in good stead later ;-)

Here is my version of a reduction scheme which spread a reduction over weeks rather than a couple of days. Other versions are available but this is easy to cut and paste and count out onto a diary or calendar. You can start at the very beginning as I usually do being very sensitive to steroid withdrawal or you can start round about 1 day new/4 days old dose. As I comment, you can use this pretty much continuously if you still feel good - or stop and mark time if you don't. Something similar is being used by a doctor in the north of England for his patients - and, gosh, he's finding it works! But listen to your body - if it says rest, if it says stick at this dose for a week or two - listen.

"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX."

I also thought I had osteoarthritis in my hips - the pain was very similar - but it turned out to be trochanteric bursitis. Often it will resolve with rest and ice but since I'd have had to stay in bed to rest it (I couldn't even stand without pain and it also hurt sitting) I was given cortisone injections (not into the joint itself but on the outside aspect of the hips) and two pairs, one in July, one in late September, achieved a miracle that has now lasted for 18 months!

I am so new to PMR and have so many questions!  I explained my split dose reasoning to Dave above, gp is well meaning but no expert! What causes a flare up?! I was feeling terrific and completely deteriorated within 48 hours. Are flare ups typical? Are they triggered by something? Over exertion? I cut my lawns for the first time (a job I love by the way) prior to my flare up. Weather? We are experiencing a cold, damp spring?! When flare ups occur it is understood that Pred gets increased and the reduction process starts all over again!! And this goes on for how many years?!! Grrrr