Dr determined I don't have PMR, I'm pretty sure I do; who's right?

Yes, it fluctuates. One day I’m active and okay, the next it’s all an effort, fatigue cuts in and simple tasks become a battle. But you’re right it does change back! 

Tell me about it! I saw Dr Hughes in October last year and he thought I had a possible Lupus/RA/PMR combo, then I saw his registrar last week and he thinks it's more likely to be PMR (he agrees that the hands can be involved). I'm 17 months into this "condition" and the doctors are still dancing around trying to agree on a diagnosis...

Did the pred help your pain?  Were you given time to come off pred slowly so at least you minimized problems with adrenal function?

Did pred relieve your symptoms when you were on enough? If so - it wasn't fibro.

And when you reduced and stopped - how did you do it? From 7mg down, were you allowed to reduce very slowly to be sure your adrenal function was returning? 

And WHY does your GP disagree with a PMR diagnosis?

Another I stated on steroid just before xmas 2016 - 25mg was whizzed down in a month to15mg then apart from a couple of times when I stayed on the dosage for two months whizzed me down to by 1mg per month so I finished taking it at the end of last November. I sent the Bristol papers you told me about though and saw him last week and he now admits he might have been doing the bloods too soon after I dropped, so did them again last week to check inflammation and has done as I asked and referred me back to the rheumatologist. Also is consulting with another GP I've never seen so she has no preconceptions about my case. I've to ring tomorrow for result of tests.

Hi Eileen see my answers to Anhaga.Must say though that it's thanks to this forum and the guidance I got I think from you about the Bristol papers that has got my GP moving. I printed them out, highlighting various parts and emailed them through to him with a request to be referred back to the rheumatologist and when I saw him last week the referral was already in. Plus my son and daughter had been on to him about it also having read the paper so hopefully I won't have to wait too long for an appointment. And yes within two days of going on prednisolone the pain disappeared.

" within two days of going on prednisolone the pain disappeared."

Then whatever it was/is it isn't fibro. If you have lost a lot of weight - he may be messing about with GCA causing the PMR symptoms. Show your GP this paper that I recommended to Debbie - you can google it and it is free to read:

The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease by Christian Dejaco Christina Duftner Frank Buttgereit Eric L. Matteson Bhaskar Dasgupta

He needs educating about the faces of PMR/GCA - like a lot of others.

Great that you've got a supportive son and daughter!

My dr thinks I've had PMR too long, so that it shouldn't be Pmr anymore.  My SED rate is always 40 or above, sometimes way above like 120.

Debbie, I looked back quickly at some of your earlier posts.  It appears that you are a longtime fibro sufferer and about three years you got an additional diagnosis of PMR?  You had elevated inflammation marker at that time? Is that right?  Did you ever get proper relief of the PMR pain from prednisone?  

It's possible for PMR to last quite a few years, usually not more than six although it can be longer.  Most people are not better within two years, but some are, and it seems doctors focus on that lower time length.  But if pred has never properly relieved your symptoms there may be something else going on, or the PMR diagnosis might have been wrong.  

If your sed rate is that high, the pred doesn't really relieve the pain and you can't reduce - they are all signs this isn't PMR as Anhaga has said already. It coud be GCA, it could be something else.

Why "can't" you do the tests? The shoulder thing sounds as if it could be ultrasound on the arteries in that area and the joint - it's not a big deal. MRI is a bit loud but doesn't hurt or require you to anything besides lie there for a short time - I've had a few on various parts of my body, You, as a non-medically qualified person, can't say you don't think they will show anything - they might not, but that not only rules out possibilites for the cause as well as them confirming something is there when they find it. Your doctor is trying - you have to buy the lotto ticket before you can win it. 

But it has taken her a long time to come round to that idea - nothing to do with the length of time which ISN'T a real justification, about half of people have PMR for more than 4 or 5 years. I think I would be seeking another opinion

But the prednisone DOES help me and it lowers my SED rate.  I guess I didn't make that clear.  I think maybe my fibromyalgia is hurting me, too, and not affected by what I take pill-wise.  I've tried the fibro pills which helped for a week or so until they made me so much more depressed that I had to stop them.  Your question about an additional diagnosis of pmr probably refers to the year I had pneumonia so the SED rate went up really high, and that's when I went up again to 20mg and haven't been able to get below 15 since.  I went from 15 to 20 about a year ago due to the 120 SED rate.  It then went down to 40something SED.  Thank you for your reply.

I know you are right about taking the tests.  I've just been tested so much and spent this past year being in hospital with back fractures that I am so tired of it all.  I will probably get back to being responsible soon.  Please read my reply to Anhaga, too.  Thanks EileenH!

Thanks Debbie.  Just trying to clarify things.  You've had a long and complicated journey and of course we people are just seeing a little slice in your individual posts....  

My own journey was so straighforward with the merest little hiccups until this past summer and now it seems less simple, so I do appreciate how difficult you've been finding things.  I also have osteoarthritis and until the last few months it was really easy for me to distinguish OA pain from PMR.  Now I begin to wonder if I've started to get things muddled.  No wonder the doctors sometimes throw up their hands in despair!

I do hope you get some useful answers from your doctor(s) soon!   Best wishes.

Yes, I do understand that. My husband has just had a year like that and won't mention anything to the GP just in case it results in more tests!

But the fact the pred DOES help but you CAN'T reduce easily AND you still have raised inflammatory markers suggests there is something else going on that the pred isn't dealing with well - and knowing what it is would possibly enable them to find a medication that works on that.

For example - I have a friend who was in a similar situation. Her diagnosis was PMR/GCA but she couldn't get the pred down without problems. Then her rheumy had a lightbulb moment when she mentioned that her back pain was early in the night which isn't usual with PMR - special imaging found she didn't have PMR after all, it was ankylosing spondylitis. They can present very similarly in the early stages and AS responds to higher doses of pred. But it responds much better to other drugs - so now she is on one of those and doing far better than she ever did on pred.

I know it feels neverending - but having the right diagnosis makes a massive difference. I was there too 5 years ago, I had a real annus horribilis - but once they got things right it was all so much better.

can you tell me what the sed rate stands for ,as in sed and what is the other market for inflammation? Someone suggested I get the GP to give me a print out and get to know what it means if the markers are up or down. So I'm going to do that but haven't a clue what the marker s stand for as in sed and the other one.

SED rate = erythrocyte sedimentation rate (ESR). The other measurement for inflammation is CPR, which a lot of people think is a better measure than SED rate. I normally have both taken. 

The sed rate test measures the distance red blood cells fall in a test tube in one hour. The farther the red blood cells have descended, the greater the inflammatory response of your immune system.

ptolemy has explained the sed rate. The other marker for inflammation is c-reactive protein, CRP. The prescence of extra proteins being made by the liver in response to inflammation somewhere in the body on the red blood cells makes them clump and fall to the bottom of the tube faster - so there is a link between the two. 

But they are both very non-specific and will rise in response to colds or chest infections, not just PMR.

I've requested a print out of results from Dr and am picking it up today so what should I be looking for exactly. Eileen explained the CRP which I think is why the Dr says he does a blood test to check my liver. What will show on the print out if there is inflammation there. Sorry if I seem slow on the uptake but I've no experience of med charts

Hi Porgi

On my printout they show the actual figure eg CRP 20 then a range of what it should be eg 0-5 and if it is outside the range it has an asterisk against it. On mine there is sometimes a comment from the doctor who checked the blood test results. In my surgery that could just be the doctor on duty. It could say everything is OK or make an appointment.... 

CRP isn't usually a liver function test - there are others. But if you have any that are outside the lab's own in-house normal range (they all differ slightly) just ask on here and we'll try to help. 

As ptolemy says, there should be the name of the test (which may just be letters) and a figure which is what they measured and then a range in brackets after it which is the lab's range. There may even be a comment. 

Hi Porgi

i request a copy of all tests now each time I have them. I’m tested for CRP, ESR, glucose, LFT( liver function tests which have quite a few components tested) and a range of other things. Any that are outside the range are in red, some also have a comment e.g. “neutrophilias present”. I then jump on google for an explanation, even if it’s just to define what it is that was tested as some only have letters e.g WCC which is white cell count. Eileen’s suggestion is wonderful though, any questions just bring them here and you will receive wonderful help and advice as always.

Had a good visit to the gastroenterologist yesterday he's sure I have sjogrens syndrome because of the gastroenterology symptoms. I took a paper about it with me in case he hadn't heard of it but didn't need to show it to him, he suggested it to me. Also he seems very knowledgeable about polymyalgia. He says what I need is a viscous test as it's far more accurate than the others and is going to see why I've not heard anything from the rheumatologist yet. When he looked at my records from early last year he was shocked by the amount of weight I've lost.

I've checked my blood results and there's a lot of tests been done but I can only find an CRP test for inflammation and not an ESR. The CRP is shown as 5 which some of the websites say is high, is that right against it the following occurs mg/l 0-9 and I haven't a clue what that means. can you explain please

I was shocked by the amount of weight you have lost without your doctor being concerned! 

Does he mean plasma viscosity? If he does, it isn't that different for PMR to any of the other tests, it is just a different measure and probably not one that most rheumatologists are familir with. But it sounds positive.

I would imagine the mg/l means milligrams (amount of the protein) per litre (of blood). and the 0-9 is the range for YOUR lab. If the mg/l was as mg/dl it would mean per 100 millilitres of blood - so there would be a 10-fold difference: 5 mg/l or 0.5mg/dl and they would give the range as 0 - 10 or 0 - 1. 

Does that make sense? 

Hi Ptolemy Checked my blood result and there's no Sed rate shown but the CRP rate is given as 5 followed by mg/L0-9. The 5 would indicate my CRP is high but does the 0-9 mean that Its raised but not worryingly so? And why is there no ESP showing, does that mean the doctor doesn't bother ordering a test for that. Also see my post to Eileen -  the gastroenterologist says a far more accurate test is  for viscous (viscosity?) and the rheumatologist will do that when I see him. Are you familiar with that test?

Many doctors don't bother with both and the CRP is felt to be more reliable than ESR by some, it isn't affected by the time the blood lies waiting to be tested, for ESR it should be set up in less than 4 hours after being taken, and there are other things such as age with effects too.

Your value of 5 for the CRP is slap bang in the middle of the range for mg/litre - it woul dbe high if they were using mg/dl as I explained in the other post.

Thanks for the help. Yes I think he means plasma viscosity - he says itits more accurate than the other tests. Also the four time for the Sed rate explains why my GP doesn't do it - the tests go off to the local hospital and have to meet a deadline of 10am if the tests are to be done that day. Miss that and the bloods go off the following morning.

I wouldn't say it is more "accurate" - less interferes with it. But even it isn't perfect and in the UK at least there are far fewer labs that do it. It was done for a trial period - and it was decided that the difference didn't really justify the cost of rolling it out to every lab which is what would have to happen. ESR and CRP can be done in a couple of hours everywhere once it gets to the lab, if you had to send the PV to the hospital and then they had to send it to a specialist centre you would always have to wait for ages.

Some doctors have a fixation with numbers - ESR and CRP are fine if you do them regularly and see the trends in a chronic illness. 

Hi Porgi, your CPR of 5 looks pretty good, better than my highest of 415!! As Eileen says a lot of places just do CRP nowadays. 

Eileen or Anhaga are your best points of reference for medical information, I only google everything if I haven’t learnt from personal experience 🤪 but I do understand most of it. I’m just hesitant to give medical interpretations when I’m not qualified.  I see Eileen is on the ball as always and has replied to you below, so I will leave it to her to,help,you. If she can’t, believe me, no one can. 

Valid question Reeceregan.  I think I was asking questions more than giving an unqualified diagnosis.  And Eileen is the expert.  I sometimes ask questions because I live in a different time zone and often, then, the additional information will be waiting for the experts when they wake up on the other side of the Pond.

I certainly value your contributions Anhaga. And agree that when I wake up, there are all the   Posts that make so much sense when there are so many questions running around in my head. More often than not I think so many on here have ESP. I think it, wake up, and someone has asked the very same question and others have already answered....problem solved quicker than calling the doctor ! 👍

Hi Eileen do you know anything about ranitidine? GP prescribed it to protect my gut against prednisolone but the gastroenterologist said it wouldn't be enough and I should have been on something else - I can't remember the name but it was something like omixopril

Ranitidine is an older medication to reduce acid production, called a histamine-2-blocker which is how it works. The stuff your rheumy is on about is omeprazole, a PPI, proton-pump-inhibitor - which is how IT works. The ranitidine does almost the same, the difference is minimal - but omeprazole has been aggressively marketed and very successfully so many doctor think it is better. It has far worse side effects - including causing osteoporosis! I've never taken anything - if I did it would be ranitidine!

Didn't you need anything to protect against the steroid?

Hi Porgi, if you are taking a coated version of steroids you normally do not need any protection.

I've found breakfast is enough to protect my stomach, uncoated tablets.

I've never taken anything but I was on enteric coated pred in the UK and used yogurt as well. The current stuff is different - coated but breaks down in the stomach after a proper meal and I have never had any trouble at all.

Depends what you have for breakfast. Because I'm generally too tired to have breakfast until 9or so and because I was worried about keeping tablets safe from the dog- she tends to snap up anything dropped I was taking water and bread and butter to bed to have early morning now I'm wondering if that's where I went wrong and I should have had my usual porridge then gone upstairs to take them. I think I've not been protecting myself properly

No idea what they were,they weren't shiny just a chalky white colour so I guess not coated?

Just seen the bit about osteoporosis, thankful I wasn't given those. I was adamant I wouldn't take andronic acid because I did research and there was enough there to worry me and pressed for dexa scan which found I didn't need to take AA or even calcium tablets. GP still testing me for calcium and says I'm fine though I did worry about not being able to have milk and only having soya with calcium supplement

I'm having great difficulties resisting both my GP and my rheumy's registrar, who are both insisting that I take Alendronic Acid. I was meant to have a DEXA scan, but it wasn't mentioned, and with everything else that we discussed, I forgot to ask for one. I shall continue refusing AA, even though it was mentioned three times in my clinic letter! I think I'm down as a stroppy customer!

Having had lactose intolerance for many years, they might have a point, but I've been good at taking my calcium and Vitamin D3 supplements since I've been taking Pred.

The only way to know is to have a dexascan - no ifs or buts. Even I have nothing against bisphosphonates being used for the patient with a very low bone density - I don't think it is as good as they think but they do have a point. They don't have a point if your current bone density is OK.

I'd insist you have a dexa scan. I had to and various GP in the same practice sawas that i was in danger delaying but then was proved right. I also have lactose intolerance

Are you able to consume some of the fermented types of dairy - some cheeses, yoghurt, kefir? Too big a deal is made about milk being the best source of calcium (not true).  What other animal consumes "dairy" in adult life?  You can get calcium from some of the leafy greens, among other things, collards, kale, broccoli, and so forth, although some, like spinach, not so good, I think because they also contain phytic acid or oxalates, which interfere with absorption of minerals like calcium and iron.

A lot of people seem to take their pred with a small helping of yoghurt, especially those who get up in the wee small hours, like 2 or 4, to take their dose. I've found eating a little yoghurt with my bedtime calcium has helped me tolerate those capsules better, so I'm sure the yoghurt is helpful for pred as well.

I like my breakfast and have quite a large one, but it's often 8 or later by the time I've swallowed the pred, even though I get up at 6:45.  Have to do my exercises first, and feed the cats, then me....  One of my cats broke into my stash of morning tablets and obviously licked the pred but decided it not to his taste.  Quite happily ate everything else, though, fortunately just vitamins! 

I had a scan and it showed bone thinning. I take Ibandronic acid once a month because I didn’t take well to Alendronic acid. Osteoporosis is nasty so I think it’s a balance as to what you take and why, without setting your mind against anything too rigidly. All best 

Wish usually take my pills about 4am now not sure whether I did when on predict but like to go back to sleep before my husband gets up for work at 6 because he gives me the eye drops for dry eyes before he goes. Checked with daughter in law what she eats before her precious and she just has a breakfast bar and coffee my son gives her before he goes to work. She works evenings and doesn't get home till about so likes to sleep in. So there must be a few of us who take our tablets very early

If Clare is like me then I can eat sheep's cheese because it's not as fatty as cows. The one I like starts with an M and ends chago (just in case moderator doesn't like adverts). It's a hard cheese and not watery like fetta. I'm having a bit each day now melted on gluten free crumpet. I used to be able to eat goats cheese as well but it's fattier and it now upsets my stomach. You're right about some greens not being good for you. I stopped eating spinach and kale because I read that they prevent absorption of calcium

Kale does have some oxalic acid, but not as much as spinach.  I think it may be a better source of calcium if cooked, not sure, but I eat it anyway.  Doesn't seem to have hurt me!

I think the recommendation is that it's ok a couple of hours before you take the calcium supplement.

I thought it was relating to the calcium in the kale itself - it is a calcium powerhouse!

The leaflet says wait two hours after eating foods rich in oxalic acid, (eg spinach, rhubarb) - phosphate (bran), or phytic acid (whole cereals)

The oxalic acid and phytates in certain veggies bind with the calcium in the gut and prevent absorption - it is a purely mechanical thing.

Not sure who to address this reply to.  It has been shown that absorption of calcium from kale is higher than from milk.  Kale is considered a low oxalic vegetable.  So there.   Eat your leafy greens!  🥗

low oxalate