Exactly... the salient issues in the link I previously provided (Youtube GCA) is that PMR sufferers seldome have ESR or other inflammatory markers documented PRIOR to the inflammation event, so how to know "normal." The first phase is the uphill battle convincing the Primary care or rheumatologist that we have valid symptoms, identifing the disease, and testing this ghost with Prednisone. I have found some interesting current Medical Journal articles which begin to address some of the antiquated criteria physicians use to evaluate PMR, which I think would be useful to people here:
"I suddenly felt I'd aged": A qualitative study of patient experiences of polymyalgia rheumatica (PMR).
How to post?
Yes, I've seen it - the NE of England support group has had input with that area of research. I am also one of the patient associates in some similar work for the OMERACT (Outcome measures in rheumatology) meetings - you have to know what the illness does to people in order to be able to measure improvements with various therapies. It isn't easy getting through to someone who thinks of pain and stiffness in a different way to the patient! Then there are the ones who say PMR isn't painful...
You could post it and wait for the moderator to approve it - because I think he would. Or you could contact him as he suggests at the beginning of the first post in this thread and ask him if he'd add it to the approved links
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
What is it in? I read it pre-publication.
However - I've just tried to access it online and it appears to be behind Elsevier's paywall so posting a link won't help. I think it is blocked for free-to-view for a year.
It's a shame but increasing numbers of relevant links are disappearing behind such paywalls. I have some papers I listed a few years ago which I could read then - now they are not available to me. So frustrating.
I agree, being able to shove it under the noses of the sceptics would be so helpful! Because most of them won't read it otherwise.
However - anyone with PMR living near Sheffield could do worse than have one of the authors as their GP. Living in the Leeds/Sheffield area is probably one of the better places to be if you have PMR/GCA since they work on educating the local GPs!
Hi just reading here if inflammation is under control, CRP /ESR should be normal. I have reduced to 50 mg pred and my GP took a blood test and sent it off, results of CRP was 10.9. Don't know how the ESR is actually written on blood test? But Eileen should I keep reducing or should I stay on what I'm on thanks
thats interesting about thigh and bicep Claudication ( which you say are mentioned more as a GCA symptom. That's where I had pain in my thighs and couldn't walk, and pain in my neck and flu like symptoms. So maybe I didn't have PMR. Just GCA. what would you think Eileen
Hello elizabeth, if you put forward that as a proposition, how about this one then, how many of us have been diagnosed with PMR but actually we have PMR and GCA as well, (not the temporal arteries though). Just mild GCA that has responded to the 15mgs of preds. Could that be possible, or does GCA in the body area always require higher doses of prods initially? Regards, christina
It is the trend that is important - what was it before? And above all the symptoms. The symptoms always trump the blood tests.
If you are clear of symptoms in GCA it is a good idea to try to get that very high dose down lower - but stop if any symptoms return and discuss it with your doctor. Some patients are started at 40mg in GCA and it is enough - higher doses are if there thought to be is any risk to your sight. You may get discomfort for a few days after reduction - some doctors call it "Steroid withdrawal rheumatism" I discovered a few days ago! If your doctor has said to reduce 10mg at a time and that happens, ask if you can do 5mg steps every 2 weeks rather than 10mg every month - that may help.
PMR is part of GCA in many people - it just depends what arteries are affected which symptoms you get. Many people with GCA never get the PMR symptoms at all, the only arteries that are affected are in the head and neck.
PMR isn't the disease - it is the name given to the symptoms of an underlying autoimmune disease. I think some doctors believe that if PMR symptoms are particularly severe then it is more likely to be GCA - though to me that doesn't really make sense, it where rather than how bad that matters.
Christina - the rheumy here is of the opinion that 15mg will eventually deal with any GCA that isn't in the head. But when it is affecting your head - brain and vision - then it needs a very high dose to avert that risk as quickly as possible which is why they use such high doses. If the patient arrives too late and the optic nerve is already damaged then even the massive doses won't prevent them going blind.
As I've said before - they don't KNOW which we have unless they use fancy imaging - they can't see, they are only going on the evidence of the symptoms. And yes you are right - GCA may only present as symptoms that predominantly PMR, it all depends on where it is.
Thanks for that Eileen, I have had blurred vision in my eyes from pred, yesterday and today a little bit worse, eyes watering and pressure sore, would this be steriod withdrawal, likevthat don't think its to do with GCA? Cause is listed as one of sides effects of pred, thanks for all your help
Hi Eileen, thanks for that. Have a great weekend. I was hoping to get a bit more work done in the garden but it's pouring down here in Cornwall. I've looked at the lounge thermostat and it reads 12.5! I think the wood burner may be lit later! Regards, christina
Ah, I see you have found Mason's effort. He also insists I don't have either PMR or GCA as I don't have raised inflammation markers and have never had them.
The fact that I don't have them is the reason I was referred to a Rheumatologist in the first place, my then GP had seen PMR before but not as I presented. Luckily the Rheumy I was referred to had and I have always been managed on symptoms which has worked well for me.
We're not medics here Elizabeth, and even if we were we couldn't diagnose anything "from a distance". Some people also develop dry eyes - from the autoimmune part definitely, whether also from the pred I don't know. That causes watering eyes (I know, daft, but the normal thick tears aren't produced to keep your eyes moist so they produce lots of thin tears to try to make up, it doesn't work).
You know what the symptoms were you had to start with with the GCA - a return of those is when you get concerned. Pred at those doses does all sorts of things but I have no experience of them. If you are worried over the weekend, stay where you are and ask the doctor when you can. If you are really worried over a weekend call the out of hours number and ask for advice.
It was a holiday here (all over the rest of Europe besides the UK) yesterday and it rained. Wasn't horrendous here but it was further north I think. But it never got into double figures all day here. We resisted the temptation to use the wood stove. Better today - will be even better when the sun gets round to the balcony...
I didn't follow the link Nefret - that'll teach me!
Dan - Mason's ideas are really very "off the wall" and while his understanding of statistics may be exemplary (or not, I don't know), his understanding of medicine and biology are definitely not. We had a long "discussion" with him on another forum and he became increasingly unpleasant about his concepts being correct and us all being wrong. For a scientist he was very unwilling to consider "outliers" - and failed dismally to understand that the human body isn't a machine and doesn't always obey mathematical laws.
Be careful what you take from the internet - there was a forum via Yahoo which also had some very strange ideas. The 3 forums here in the UK are very tightly moderated to make sure that what is to be found here is reliable and trustworthy information.
Thanks Eileen I know your not medics here. But sometimes you know more than the doctors. I have that moon face they talk about and it's like it's in my eyes like swelling and puffiness in my eyes and eyes bloodshot would anyone else have this? and when do you get sleep on these pred I only get 2hours sleep, does it improve as you reduce?
Morning elizabeth, prior to diagnosis because of the extreme pain I was lucky if I got 2 hours sleep a night. Then when I started on the very first 15mg dose that night I slept like a log. I have tapered down to 8.5 and although on the whole I now sleep very well, (2 nights ago it was very windy here in Cornwall and our dog Katie was running from window ledge to window ledge barking away as the security light kept coming on activated by the extreme tree and shrub swaying. Apparently my husband got up twice to shut her up as he was worried the neighbours would complain. I slept right through all the commotion, never heard a sound). But, I do have at least 2 nights a week when I find it hard to firstly fall asleep and secondly stay asleep. But throughout my period of tapering sleep has definitely got better. Regards, christina
Yes - my eyes were very puffy and I "lost" my eyelids for ages. Some is fluid retention but some is also due to the new fat deposits for the moonface and hamster cheeks.
And yes - pred does disturb sleep patterns for many people - like Christina it didn't bother me too much but I'd also had 5 years of poor sleep due to pain and had a lot of sleep to catch up on! You have to learn to rest even if not asleep - worrying about it will make it worse. Some people plan a good rest in the afternoons - that helps you last out through the evening and then be less exhausted when you do go to bed which also makes getting to sleep more difficult - remember saying the kids were "past tired"?
Some people stopped worrying about the not sleeping - they moved into their own bedroom to avoid disturbing their partner and found other things to do including taking up new hobbies! And yes, it does improve as you get used to the pred - many side effects do fade with time - or the dose reduces. Just try not to worry about it and try relaxation techniques perhaps, and look up "sleep hygiene" for tips on making things better - removing light from the bedroom, especially blue or green light (that electic alarm clock?) and don't use computers, phones or watch TV immediately before bed for example.