Fatigue as a precursor to polymyalgia rheumatica: an explorative retrospective cohort study

Hello oregonjohn, your above post is most interesting. I was diagnosed at the age of 52, December 2013, although I had been suffering from ALL the symptoms since the September. My problem is that I am not a good patient. I hadn't been to visit a GP in over 5 years and throughout that time had suffered various colds and coughs, migraine, etc but never went because I always considered myself as essentially well. However, my faith in Drs was tested throughout the 3 months of undiagnoses as I was suffering from all the symptoms but my GP "simply for the life of her, couldn't imagine what was wrong with me". I told her that if she didn't have a clue then she best refer me to someone who did. Following my rheumatologist consultation he told me that he believed I had PMR and if the medication worked initially within the first 24 hours followed by further improvement there on then PMR is what I had.

when I got home I immediately looked up PMR on the Internet and was absolutely shocked to see that I suffered from everyone of the symptoms yet my GP had no idea what could be wrong with me! And, further to his words on how I would improve if I did take the medication - I was almost to my normal self within 4 hours of my first dose of preds, yet only the previous day my husband had had to help me in and out of the car simply to attend my first rheumatologist appointment.

i suffered terribly from fatigue but always kept going almost denying myself that I could have something wrong with me. Then when all the symptoms kicked in pre diagnosis I simply thought it was because I was in so much pain that I was luckly if I got 21 hours sleep in a week.

i also read that PMR is the most common inflamatory condition occurring in the elderly, and so I am still shocked that so little research work was conducted. This situation appears to be changing. Everyday I log onto this forum and there always seems to be some research work being quoted, which is brilliant.

thanks for all your work, along with Eileen and Mrs o and others many of us would be seriously, mentally lost and broken without the help and information you all offer. Regards, christina 

Thanks Christina, It's me being 'nosey' (like Mrs O !!)  I like to know what going on and now I have the time to 'research' it's supprising what you find out.  It was a locum I saw after my regular GP dis diagnosed, who suspected PMR and from that point on I really had one up on my GP!!

Christiana, well said....without the guidance of current PMR research and the caring help of Eileen, Mrs.0 and Mrs.Mac and this forum..... many of us would be seriously lost and broken including myself as a newbie.

With thanks,

Erika

Yes erika, when I first attempted to reduce from 9-8 just prior to Christmas last I had a flare. Now, I only ever reduce by half, with the blessing of my rheumatologist, and I got that information plus the reduction regime from this forum. I am now down to 8.5 and feeling very well. This forum and all the information and experiences shared by everyone are as important and as vital to my recovery journey as any recovery plan suggested by my rheumatologist. However, I am most lucky he is a brilliant man who works with me. Regards, christina 

Hi Judy,  My brain is still in a bit of fog (suspect the preds) but I'm taking the slow but hopefully safe route reducing preds. I will be glad when I can get more of my life back.

John, the pred doesn't seem to affect the fatigue... I've started to reduce the dosage from 8 mg to 6 mg a day.   The pain has not returned ( only 3 days so far) ...... The fatigue has really disrupted my life...

I to am on 8 mg and will start a reduction to 7.5 mg shortly.  I'm at the 10 months from diagnosis point and I seem to be coping OK  Will stay for 28 days and reduce to 7 mg all things being equal.

I'm hoping I'm not going down too quickly.  I cut the 8 mg in half...   Did some one tell you how to reduce the dosage?  I'm on my own.  

I use the slow but sure method that Eileen has mentioned a number of times on this forum.

Basically I drop to a lower dose by 1 mg or 0.5 for one day in the first week, and then two days, but not consecutive, in the second week, and then third week three days etc until all days at the lower dose. 

A 10% reduction is recommended which is a problem below 10 mg so I reduce by 0.5 mg all using a mix of 5 and 10 pills cutting the 5 in half when necessary e.g. 10 mg =  2x5mg,  9 mg = 1x5mg + 4x1mg,   8 mg = 1x5 + 3x1mg then 7.5 mg = 1x5 + 0.5 of a 5mg.. 

I then stay at this dosage for 28 day checking if I'm OK and not getting any flares or other nasties.  If all is OK I then start the process over again.

Hello judy, yes I also reduce by .5mg. I was reducing 1 mg at a time then when I tried to reduce from 9-8 just prior to Christmas last I had a flare. I upped my preds to 10 and have only just reached the 8.5 stage reducing by .5 each time. Like oregonjohn I do the 1 day new dose, 5 days old dose, 1 day new dose, 4 days old dose until I get down to 1 day old dose, 1 day new dose which I stay on for a week, then I go onto the new dose completely. As I say I'm down to 8.5 and presently feeling very well and happy. All the best. Christina

Oh yes, just to add I cut the 5mg tablet in half to get my .5, I use a tablet cutter that can be purchased from most pharmacy stores. Always try and get the indented line on the tablet in line with the cutter because if you don't you can sometimes end up with the tablet not cut quite correctly in half. Christina 

Here's the link to the resources page on the forum. The very slow reduction is detailed in the replies section

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

I have read in the past that people that have took HRT, like you and myself, go onto get PMR...makes you wonder.  I have had ME since 1989, and last 12 years Fibro as well.......

Do you think if enough people say this that the powers that be might research it?

I can understand why there is a majority of ladies with PMR!  We men are very lucky not having to go thru' all the problems associated with the menopause.

There is certainly some suggestion that there is a hormonal something going on! Never mind John - you can suffer along with us 

I'm inclined to think though that it is a hypothalamus/pituitary/adrenal problem somewhere along the line and that there are differing or even combined causes for a similar clinical picture - for some people if you take out part of the problem with HRT or pred or thyroxine it improves enough for them to manage reasonably well until whatever it is dies away and goes into remission.

It doesn't really matter how many people say any of it though - without money there can be no research and unless someone in Big Pharma thinks they might make some money out of it they won't offer any to do the basic research. Basic research is done by committed souls who spend their evenings and weekends researching in word and deed - I've been married to one for a very long time. But when you find a simple/cheap answer noone wants to know because there are no profits.

Money moves research. !

Eileen just a quick few questions for you, I'm down from 80mg to 60mg just have slight pulsations at side of right temples, should I stay on 60mg? And how long for? Hospital reduction plan was 10mg a week until I get to 30mg and due back at hospital then, I know they said if I experience anything to go back up. And my daughter is having a baby in Cayman Is start of June what the story about travelling?thanks

Sorry for the belated reply...but the short answer is no, I don`t think the powers that be would research it...I always remeber in the 80`s when I first got ME I asked the doctor why more research isn`t being done into it, his reply was, all the money is going into AIDS, because you die from it.  They ONLY think you suffer, not die from ME!....and since having Fibro/PMR as well, nothing over those years has really changed, and they always say in the media 250,000 peoople every year have ME...that has never changed either!.......

Not something we can say here - that is something you have to discuss with your doctors. If you have any return of symptoms stop reducing until you have spoken to your doctors - a return of symptoms means that the inflammation isn't under control and they may want to raise the dose again. 

There are people who are able to travel with no problems and have done so even on high doses - but you must make sure you have discussed it all with your doctors. It is one thing travelling somewhere with a good medical system, another a long flight to a desert island. But what you must be sure of is that your medical INSURANCE will travel with you - will you be covered for medical treatment if you had a flare? And always travel with stocks of pred that enough to cover such a situation.