Fatigue research

[granny-b]

I was reminded about Dr Mackie's research about fatigue. Is there anywhere I can read about it. Any report as yet?

[HeronNS]

Is this it? I was able to get the PDF but it took a while as the website wanted to validate my browser.

researchgate.net/publicatio...

[SheffieldJane in reply to HeronNS]

Thanks for sourcing this Heron, it is dated Feb 2014 however, and I participated in another study led by Sarah Mackie, last year and I believe that this was also looking into fatigue in PMR. I haven’t come across any results though.

[HeronNS in reply to SheffieldJane]

I did note the early date, and there isn't a lot about fatigue in the article but thought I'd post anyway. If the research was happening last year finished article may not appear for a while yet.

[SheffieldJane in reply to HeronNS]

I wouldn’t know how to go about finding it.

[HeronNS in reply to SheffieldJane]

Well, first of all the research has to be compiled, then the article written and submitted to a peer reviewed publication. I don't know how long all that takes but I wouldn't expect anything to happen quickly.

[ConventCassie in reply to HeronNS]

If it’s govt funded will be at gov pace. Review boards and all that.

[PMRpro Ambassador in reply to SheffieldJane]

I don't think that study is finished yet - someone left which slowed everything down. Studies takes year - because you have to recruit enough subjects for the results to be meaningful and this sort of thing also takes a long time to be able to assess whether it helped or not. In the UK not an awful lot of research is directly government funder - not like NIH in the USA.

However - the link Heron has posted is about a literature review for a special interest group within the OMERACT group. The accronym means Outcomes Measurement in Rheumatology - a group looking at aspects of chronic disease which can be measured/assessed as a way of knowing whether a treatment is helping. Patients are also involved - because it is US who knows if that treament was worth it in terms of our life, not whether a lab value changed but we still felt ill or, even, worse. The criteria are for standardising research so that various studies can be compared by measuring the same things under the same sort of conditions. It isn't directly research about the disease.

[Purplecrow in reply to PMRpro]

There you go again❣️ You make so much sense when you translate the scientific into layperson language ! Thanks, J

[Marijo1951]

Thanks to HeronNS for finding this paper. It made interesting reading and brought back memories of the 4 months between the onset of symptoms and diagnosis when I would debate with myself which was worse, the pain or the stiffness...

[granny-b]

Thanks to everyone who contributed to my post. I shall watch out for the results from the later research.

In case you hadn't guessed I feel exhausted most days despite trying very hard to pace myself. Maybe I need more spoons.

[Hindags]

I think it would be useful just to know how delay of treatment, (between symptom onset and beginning of glucocorticoid treatment) affects the course of treatment. I often think that my good luck in starting treatment only about 6 weeks from the very first nigglings, and 4 weeks from the first bout of stiffness and fever has helped me avoid some of the worst issues with PMR.

[PMRpro Ambassador in reply to Hindags]

Don't know really - apart from the duration I'd say I'd missed out on some of the worse aspects of PMR and that was after a 5 year delay.

[Hindags in reply to PMRpro]

I wonder if I had started treatment even earlier whether I might have avoided my right shoulder issues, bursitis, rotator cuff. These came after few months of PMR despite a generally good response to steroids. Right shoulder pain was the first niggle. It is chronically susceptible to overuse, or just wrong positioning now. Not dose related from what I can tell.

[HeronNS in reply to Hindags]

Perhaps I'm wrong, but I'm blaming similar issues on prednisone, not PMR.

[PMRpro Ambassador in reply to Hindags]

The bursitis was almost certainly a part of the PMR - but the others, who knows. Rotator cuff is common enough judging by mentions on the forums - and often it is confused with PMR in the diagnosis.

[granny-b in reply to Hindags]

I have GCA so wouldn't want to delay treatment. I had 7 days high dose 60mg pred before biopsy which was positive. The PMR came along later after 18 months of steroids. Can't say I missed the worst, in fact I call it the naughty little brother.

[Hindags]

I wasn’t thinking about delaying treatment on purpose for experimental reasons.And certainly not for GCA. But so many of us have had to wait for diagnosis and treatment, for multiple reasons. There is probably enough info in medical charts to do a correlational, retrospective, study.