Side effects of not treating PMR

Bones, joints and muscles
1

HI

I was just wondering if there would be side effects to the body/organs if the PMR was not treated with drugs. I was thinking exercise may help.  My reason for this is last week I was throwing and walking for about 11/2hrs (90mins) and the pain at first was almost unbearable however I had to get this job done so I kept going and towards the end of that time I noticed the pain had gone.  Think I paid for it a bit the next day but got me wondering.   Prednisone is obviously the drug of choice and I was worrying about the loss of bone density from a long term usage. I have a lot of questions.

1 What is long term usage

2 How slowly should Prednisone be reduced  I started on 15mg 2 months ago and am now on 10mg with bearable pain coming back in  muscle of arm and wrist. Dr said to reduce every 2 weeks - is that time for my body to adjust its own production of cortisone?

2

Hi denise when I first had p m r the pain got so bad I could not get out of bed or dress myself I was always very active till I got it when it was at its worse I could hardly walk so I was glad of preds so I could have alife again good luck with keeping it under control best follow the reducing list on this forum ;

3

Hi there:  Prednisone is a scary drug but it does work.   You are doiing very

well at 10mg.  An exhausting day or stressful event will make you hurt.  I am

down to 7 mgs in six months, yesterday I had a stressful appointment and was

sore but instead of upping the prednisone I took a tylenol and it worked.  My gut

feeling is that edema plays a big part in PMR and am looking into how we can

control the edema dietarily.  I don't add salt to food but the amount we ingest

from processed food is dreadful.  Our bodies are so fine tuned and I hate to

ingest any kind of chemical but when we are thrown for a loop by PMR we

must help ourselves as much as we can by listening to our bodies.  Am I going

on too much, sorry, I just want us all to be better.

 

4

Thanks ann  Where do I find the reducing list on this forum?

5

Thanks judygirl.  Yes it certainly does work.  15mg worked initially in a few hours but the Dr is making me scared of it as she keeps saying "Ihave to get you off this drug".  Edema - I'll certainly research that.  I have also started taking DHEA as that reportedly triggers the making of the natural cortisone in the body.  I'll let you know how I feel after a few weeks on that.  Also I'm trying to alkaline my system but eating less grains and more other veges and fruit - however I don't know how I'll go with that 

6

Judygirl,

great post. biggrin

7

Hi there good morning ;the way of reducing preds advised by what I read on the discussions forum ; was to reduce half mil one day first week half mil 2 days next week and so on over the next few weeks till you get down to what your body tells is the right doseage for you :all the best I hope you understand what I am saying give it a try dont try to get f off them to quickly as the pain will come back and you will have to start all over again ;hope you start to feel better I found talking to other people on this forum has helped me to understand about P M R

8

Thanks for the info - that is a lot different to what my Dr recommended as she said reduce 2 1/2mg every fortnight and wait 4 days before increasing back up if pain did not subside as the body takes that long to fill the gap with natural cortisone. Sounds like slow and easy wins the race I'll certainly talk to her about your method

9

Hi Judygirl  After research on symptoms etc In my case edema is not the trigger - maybe an acid system is.  I'm thinking of sending away a sample of blood to a sensitivity/allergy firm to see if any food shows up as a problem to me.  Everyone is different with the different genetics so we need to get as much information about ourselves as possible.

10

Most people need a dose of pred for anything from 2 to 4 or 5 years - that is long term. Some people need pred for life in other conditions and a few people with PMR need a low dose for a very long time.

Reducing shoul dbe very slow and what your doctor has said is far too fast. Google this paper:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell arteritis by Quick and Kirwan 

and show it to your doctor. Many of us believe even his reduction is a bit fast in placesbut he keeps patients on 15mg for 6 weeks, 12.5mg for 6 weeks and 10mg for a year. The paper is written for GPs to help them manage PMR so your GP should not be in a huff if you show it to them and ask them to consider it.

It has nothing to do with your body producing its own cortisone - the pred is an antiinflammatory and is managing the symptoms of PMR which will continue as long as the underlying autoimmune disorder that leads to the symptoms is active. It should burn out eventually and then you will be able to reduce the pred right down to zero - but for the moment you are looking for the dose to manage it as it is now. If it is active - you will need some pred. The pred has cured nothing.

Not using pred leaves your body in a state of inflammation and longterm that can cause heart and circulatory illnesses and even cancer. It isn't a simple case of pred is bad, no pred is good. No pred has its own risks too.

11

This is probably the very slow reduction mentioned:

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. 1mg 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.

12

That is great I'm so glad you put it in detail as that was what I was hoping for.  This is all new to me and I wasn't really sure how the prednisone acted I was just assuming it was to do with our body not producing enough of the natural cortisone.  Forever grateful

 

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With the posts you put up I now consult you first then Dr. Well its easier to read your posts than to get an appointment - small town- Australia. So to my question.  I am on 10mg Pred split in half 5mg in am and 5mg at night.  I have been having a bit of pain and not getting anything done in the morning and I saw your last post to David saying to have it at 2am.  I was going to try 7.5mg in the wee hours of the morning and 2.5mg at night.  What are your thoughts on that OR should I have the whole koboodle 10mg at the 2am time slot. Thank you in advance for all you wonderful research much appreciated

14

I do understand completely why you feel that way - I know how difficult it is in both Australia and Canada to get to see a doctor in the wilds of both countries - but for anyone looking in, please don't replace a relationship with a medical practitioner with the forums. Noone here has a medical qualification, just a lot of experience in dealing with PMR and close associations with rheumies where we can and do ask for advice. But we can only go on what you say - you may be omitting something important. We can't see what is going on and aren't skilled in other medical fields.

In PMR, and many other illnesses it is used in, the pred should be taken in a single dose once a day, as early as possible in the morning. Yes, in illnesses with early morning stiffness, 2 am is the optimum time for taking ordinary white pred tablets but it would mean a disturbed night. Most people manage well by taking their whole dose at perhaps 6am and then settling down for another couple of hours to allow the pred to get into their system and work. That also takes its effect to later in the evening/overnight. To some extent it depends on when you need to feel good and how stiff you get in the morning. The anti-inflammatory effect of pred lasts for 12 to 36 hours depending on the person - if you are at the 12 hour end you will be stiffer in the early morning than someone who is at the 30+ hour end.

Some doctors don't appear to be aware of the fact the pred should be taken in one dose - it is more like a spring clean than a daily dust, if you see what I mean. On the other hand, some suggest splitting the dose if overnight stiffness is a problem but then splitting it more 2/3 and 1/3.

If you are going to experiment with 2am/6am time slots I would take the dose all together.

15

Thanks Eileen - I think experience counts for a lot so I am grateful to all you people on the forum especially you Eileen.its 2am now and I'm going to try full dose now. Tomorrow I'll try 4am and see how that goes I did 2/3 1/3 yesterday at 4am and had pain & stiffness by about 7pm so went early to bed, I don't think the 1/3 at night had much effect however I slept fairly well. During the day I felt pretty good and had much less stiffness than the 50/50 split and actually got some work done  Fingers crossed

16

Get to bed woman!!!!! ;-) Sleep tight!