I have had a new flare-up of polymyalgia, and the symptoms are somewhat different this time.

If you possibly have PMR then plaquenil won't do any good at all - don't care what your rheumy says!

Ask if you can have a short trial of moderate dose pred and see what happens. If it works a miracle (small or otherwise) then there is a fairish chance it might be PMR. 

If your doctor won't play ball - find another.

Wow,thanks for replying so fast.I have a great rheumy and he

does listen.When I went in on my last visit we were sorting through

my previous symptoms which were ankles feet and hands being

hit with pain and slight swelling that's why the plaquenil was given

we were thinking it could be RA.I do have fibromyalgia and I can

say the pain was very different,it is an intense pain.I will ask for

a short  trial of pred to see if it will work.Did you ever have hip

tightness/stiffness when walking? I have had all the bloodwork

done and nothing ever shows

Hi there Tory, I've had PMR for nearly two years now and my main areas for pain are in my legs, with incredible stiffness in my hips and lower back - to the point I couldn't walk.

I did also have painful shoulders and neck, but the hips were the worst.

I've subsequently been diagnoised with myofacial pain syndrom (possibly fibro, but who can tell with all the other things going on!)

As Eileen says, get yourself a script for pred and you'll know pretty quickly if it's PMR.

I take plaquenil as part of my treatment but it's done nothing except give me a bad stomach (long story, not for this post!)

Flip Dover thanks for your input I appreciate it.I dont know what

a flare in the legs feels like with PMR but when I get my

symptoms in the legs it's like they seem weak then the pain and

tightness takes over.When I walk it's like my hips don't want to

work.When I place a pillow between my thighs in bed to get

comfortable that can cause pain in the inner thighs.I get flu like

symptoms and just want to go to bed.I have my appt next week

and want to prepare for it best I can

yup... sounds familar!! No matter how hard you try they just don't work properly and it hurts, all over, all the time.

"Did you ever have hip tightness/stiffness when walking?"

Frequently! Or at least, I did pre-pred and although it did take quite a while for the pain to go, that went quite quickly. Hip and shoulder girdle stiffness is a typical sign of PMR. Feet and hands can also be involved in PMR and 1 in 5 patients never have any raised blood markers (including ESR (sed rate) and CRP) - I am one and spent 5 years going to the GP and saying I knew there was SOMETHING wrong. In the end I worked out what it could be and presented the idea to my GP. Who still wouldn't agree to try pred.

Pred isn't a "it's definitely PMR" test unfortunately, other things will also respond to it, but PMR is quite characteristic in showing a pretty dramatic improvement within a few hours sometimes (not always). It took me 6 hours to feel almost normal again and i know several people with similar speed responses. Others have taken longer. But who cares really if it works!

Oh Eilleen for sure I have had 2 bouts this year of stiff hips.I did

not know what was happening to me.These symptoms come and

go.I don't have pmr symptoms everyday they just pop up.But I do

have muscle soreness constantly.The pain when it strikes lasts for

several days and then goes.Since Dec I have had multiple bouts

and the hip pelvic thigh pain tightness is the worst.Will I get to a point

where I can't walk? It is the strangest feeling.Like the tinman rusted

shut my hips from being able to move the right way.Sad part for me is

I don't tolerate pred very well.I get very cranky/irritable if I take too

high a dose,like you would take in a starter pak.Maybe I can reduce

the dose.It is my fibro that causes sensitivity to most meds.I'm hyper-

sensitive.That's interesting about the blood work and it took me 10

long years to get my fibro dx.Ugh!! What does the pain in feet fill like

as I get alot of pain in mine,pretty much it feels like walking on

bedrock and the pain is a 10+ when it hits.I get pain in my knuckles,palms of hands and wrists.Thanks again for all the info

it has been very helpful :0) Tory

Well between you and Eileen I have a pretty good place to start

in my conversation with my Dr next week.What would happen though

if I left it untreated since it is a disease that lasts only a few years

with no joint damage(this is what I have read) just curious.I take

norco for my other health issues.I can't take any antidepressants

muscle relaxers or ibuprofin.It's a sticky situation I know.Pred and me

don't get along,makes me real cranky

I'm not familiar with the "starter packs" - they simply aren't used in the UK. But do I gather you start high, use them for a short period and stop? When you stay on a stable dose of pred for a few weeks it does get better as your body adjusts - it's the same with many drugs. And with PMR often 15mg is enough as a start and then you reduce after a few weeks, slowly to a much lower dose ( if you go slowly enough).

We all get a bit cranky with pred - but I didn't find it any worse than the rather short fuse I had with PMR! There are a lot of things that are the same whether it is PMR or pred so you really can't say it is all due to pred. I do appreciate the problems with fibromyalgia - but it is possible some of what you think is fibro isn't, but PMR. Although you can have both.

It is a graduated dosage from day 1 to day 10 or 12.I have

only tried it a couple times in all the years of pain but I think that it was like 2 pills(10 mg each) at breakfast,1 at lunch then 2 at dinner and your

right it could be a mix of pred and fibro.I do have chronic atrophic

gastritis,hiatal hernia and gerd(what a mess) does pred affect the

stomach do you know?

Pred can most certainly effect the stomach - in some people quite badly - but personally I've never had an issue with it and don't even bother to eat when I take in the morning.... I usually eat breakfast a couple of hours later... (I don't do morning food very well)

Thanks for the info,I will keep this in mind.I have taken

pred before and don't remember anystomach issues

but I have never taken long term

"it might be the same thing just called differently"

What is the "It"? If you mean fibro and PMR, no they aren't the same, they have totally different underlying causes and don't respond to the same management.

If the "It" is starter packs then they won't achieve anything lasting in PMR. PMR is a chronic condition with ongoing production of inflammation due to inflammatory substances being shed in the body every early morning as long as the underlying autoimmune disorder causing it is active. The only successful management is with long term low to moderate dose pred. You start with a dose that is high enough to manage most people's symptoms and then titrate that dose down slowly to identify the lowest dose that manages the symptoms for you, everyone is different. Using repeated starter packs leads to problems as when you yoyo the dose it makes for problems later as the body seems to develop a tolerance to the pred and it doesn't work as well. This seems far less likely to happen with a slow and steady reduction.

As Flip has said - yes pred can irritate the stomach and many doctors hand it out together with "stomach protection" medications such as ranitidine or omeprazole although a lot of people have found yoghurt also does a good job of protecting their stomach.

Sorry Eileen didn't mean to sound confusing,I meant the pred.

I already take rantidine so that's a plus.Not sure about in the UK

but here in the states proton pump inhibitors like prilosec have

been declared unsafe.It is said the prilosec and other proton -

pumps cause liver damage.Rantidine causes early onset

alzheimers.Oh well,what is one to do.

Yoghurt doesn't have many long term side effects that I know of 

Really? I hadn't heard of that - but are you sure and who by? I've just done a fairish search and can't find anything significant, especially in terms of liver damage, in fact finding one recent article where doctors are being told that used properly for the right indication they are safe.

As for the pred - as I said, don't let anyone talk you into the idea that a start pack of pred will work well in PMR. It won't!

Eileen Google. Proton pump inhibitor Jamanetwork.com or

proton pump dementia.Here in Oklahoma USA it is on TV

commercial through a law firm which came out several

months ago on the side effects as to liver damage or

dementia.The antibiotic Levi quin has also been said to

cause damage.I'm surprised you couldn't pull anything up.

Jama is a medical association that put out the annoncement.

I love your yogurt comment ha ha

sure why.Hopefully it will post.if you research proton pump

alzheimers it should come up.We got the ad for it on TV earlier

this year on tv

I quote from genuine medical research;

Conclusions and Relevance  The avoidance of PPI medication may prevent the development of dementia. This finding is supported by recent pharmacoepidemiological analyses on primary data and is in line with mouse models in which the use of PPIs increased the levels of ß-amyloid in the brains of mice. Randomized, prospective clinical trials are needed to examine this connection in more detail.

The Jury is out!

From a US medical website:

The bottom line

PPIs are the most potent inhibitors of stomach acid available, and they're a welcome addition to the medical armamentarium. But every pill — indeed, every medical intervention — is a risk-benefit balancing act. The PPI-clopidogrel interaction seems to be less important than once feared, but there are other reasons to be cautious about PPIs. You don't need to take a PPI for the incidental case of heartburn. If you have a prescription, the reasons for it should be reviewed periodically to make sure they're still valid; it's common for people to take medications far longer than is necessary, and that is particularly true of the PPIs. If you need a PPI prescription — and many people do — it should be for the lowest dose that's effective. There are differences in the chemical properties of the seven PPIs and how they are metabolized. But comparative studies haven't yielded any clear-cut winners, so the less expensive PPIs are the best choice for most people.

If you put a link the computer catches it automatically.

If you google "scientific american do popular heartburn meds really cause dementia" there is a pretty good analysis of the study that was done. It's fairly new stuff - but VERY interesting isn't it? Not proven as the Scottish courts would say (and so did Oj-UK) - but I hope they do do more looking. Yet another "perfect drug" is perhaps showing feet of clay?

However, in the article about it in consumer healthday there is a caveat:

"However, the study doesn't make clear whether PPIs are also available over the counter in Germany, as they are in the United States, said Dr. Arun Swaminath, director of the inflammatory bowel disease program at Lenox Hill Hospital in New York City.

If over-the-counter PPIs are available, then more people might have been taking them and the dementia risk described in this paper could be overestimated, Swaminath said."

This is the problem with observational/epidemiological studies - the same happened 40 years ago with the dietary claims about fat being the cause of cardiac disease - not all factors are/were looked at. 

BTW - It was the liver effects I couldn't find anything for.

PS - knew there was something else I meant to say. On the data sheets there are warnings that they shouldn't be used for more than a few weeks at a time (or there used to be at least) - presumably because there is the possiblity of them masking something more serious than just reflux (though that too can be serious). But you do then have to wonder if the manufacturers were covering their backs - most doctors use them for months, even years on end.

Yes,that is what is stated and is said that's the problem if you take for long durations and many of us have taken this for years,myself included

Thanks Oregonjohn for the added information on this topic