Can someone give me some advise please have I got PR.

Welcome AnnP,

If you scroll down the page of experiences you will find one \"I think I have PMR?\" which was posted on March 30th (it's about the 19th listed). The fifth reply is from MrsK and gives something to google as well as a link to the webpage from the PMR charity which has definitive guidelines for the diagnosis of PMR. I won't give it here as the post will disappear for a while to be moderated and so you might see this more quickly!

However - although there are other things it could be, your description of your symptoms does make PMR sound distinctly possible.

If you've time, read past posts to get loads of information, otherwise follow MrsK's link to the NE support group website which has very pertinent articles from sufferers and doctors all gathered together. And when you have any other questions - come back here and someone will pop up sooner or later to provide an answer or a suggestion and sympathy! Unfortunately you'll have to make your own tea as it doesn't email too well! ;-)

Best wishes from me on behalf of the \"community\" here,

EileenH

Dear Ann

Welcome to the forum but sorry to hear of your suffering. All the painful areas that you mention describe Polymyalgia Rheumatica symptoms to a T. You also add that you think you started with a virus and certainly that mirrors my experience where at the very outset of my illness I used to wake up in the middle of the night covered in perspiration (night sweats).

Have you been to your GP? If not, it would be wise to get checked out and have some blood tests, particularly ESR and CRP tests which should show whether you have inflammation in your body. If these markers are raised, then the GP may either refer you to a rheumatologist and/or prescribe Prednisolone (a steroid) which will damp down the inflammation thereby reducing your pain.

You mention that you have always been very mobile and walked miles and although it seems very unfair you will discover from this forum that PMR seems to strike us no matter how fit or how much exercise we take.

The important thing is for you to seek your GP's advice so that you can be relieved of your pain and regain some quality of life. Do keep in touch and let us know how you get on.

Very best wishes,

MrsO

Thank you both for your replies.

I went to the Doctor's Yesterday Afternoon and I had a blood test this Afternoon waited 2 Hour's at the Hospital only one Person working, the sitting for nearly 2 Hour's was not pleasant, the Doctor said she does think it is PMR, and said all the symptoms point to this, the terrible pain in the Mornings on waking up, and the pain in the upper arms, groin area down to the knees, and stiffness everywhere.

I am in so much pain, I am grateful for this Site I linked to it from Ask Jeeves and I am so glad I found it.

I will let you know what the Test results reveal.

Thank you once again for your kind replies.

Ann.

Hi Ann!

Glad to hear you have a sympatheitc GP. I don't know how much of this forum you've read but one very important point: just in case your inflammatory blood markers come back normal - that does not rule out PMR. If they are within the normal range and your GP is unsure - ask your GP if (s)he is willing to trial you with a short course of prednisolone at a starting dose of 15-20 mg/day. A speedy response, even if only partial, is regarded by many rheumatologists as pretty much confirming PMR and they teach GPs that - no response at all suggests a need to find another cause. You don't say how old you are but younger patients are often different in the way they present - I'm not THAT young (I wish) but my bloods have never been high! But 6 hours after my first dose of prednisolone I could feel the difference.

Keep in touch,

EileenH

Hello again Ann

Like Eileen, I'm so pleased to hear that your GP has acted quickly and sent you for blood tests and if results do show inflammation, hopefully she will ring you tomorrow and prescribe some steroids. If they give you relief of pain within a few hours or the next day, then the PMR diagnosis will be confirmed. Do let us know the outcome and don't forget to post any queries on this wonderful forum as there is always someone here to help and reassure you. Best wishes.

MrsO

I am still in so much pain, and had problems with getting the result back.

I phoned up for my results and was told they had a problem at the Lab, I was told to phone Today, and then was told they had lost the blood test oh dear.

So I had to go back this Afternoon to have another blood test, the Surgery has just phoned I had the test done at 2pm so that was quick, and said the ESR rate was high, and they want me to go back again to have a CRP blood test done tomorrow, and something about a Liver test that the Doctor want's done.

Does anyone know what the liver test is? please, and why the liver, I can't read the writing on the form, but its something like immunocrop electrophmonedy on the form but the writing is not good.

Thank you

Ann

Hello again Annie and I'm so sorry to hear of the horrendous problems encountered with your blood tests. You'd imagine, especially after losing the first sample, that at least they would have requested the CRP test at the same time as the ESR I hope for your sake that you are not out in the sticks with a long way to travel to the hospital or GP especially whilst in such pain. I believe itt is quite normal to have a liver function test along with the other blood tests especially where auto immune illnesses are suspected. I have had that test carried out on most occasions that I have had the ESR and CRP tests. I hope you get more efficient care tomorrow and a fast diagnosis so that treatment can be started to relieve you of your pain.

MrsO

Thank you for you reply its been bad with the blood test's when I was at the Hospital today, I said to the Lady why when last Week I had 2 lots of blood taken then they lost the Test's, that Today I only had one lot of blood taken and she said it was requested only EPS one, I said that I had the CRP done last Week, she said as it was not on the request form she would only do that one, so when I got home from the Hospital I phoned the Surgery, and the Results Receptionist said all the lady at the Hospital had to do was phone the Surgery and say and they would have given her permission to take the CRP test as well, it was a different Doctor that gave the Blood Test form out Today, as you know they lost the last blood Test, and they got the new Blood Test request done quick so I could get it done straight away.

They were quick the Surgery to phone me today with the ESP results they are high, but I now have to go back again to the Hospital tomorrow that's three times in less than a Week, I am in so much pain too, I am taking Ibuprofen but they are not helping much.

My Son is going to take me Tomorrow he did Today, as he has just brought a flat and is doing it all up he is off work so that will help me, my Husband picked the blood Test form up from the Doctor's for Tomorrow on his way home from Work.

I am tired but I dread going to bed tonight knowing that in the Morning when I wake up I will be in worse agony than I feel at the moment, I have never felt pain like this in my life, my upper arms are so painful by groin area and underneath and my legs down to just above my knee's.

When sitting down I go to get up and stoop and can hardly walk till I get going, it came on so suddenly, I had never heard of PMR and I feel for anyone that has PMR, it was only when I put into ask Jeeves about pain in my upper arms and groin area higher leg area that PMR came up, and I found a link to this Site.

Tomorrow the Surgery said they have asked for the Test result's to be phoned through to them as soon as they are done, so lets hope that thing's will get sorted out.

Thank you for your kind reply Mrs O, and I will let you know how the Test's went.

Hello Annie

Sorry to hear of your problems with your blood tests I went up to my nearest City Hospital to have mine once and they didnt do the CRP which was on the form !!! I was very annoyed so if I go there now I check they are doing 2 phials of blood and not one ( I dont like looking at the blood being taken !! )

I hope you have managed to sleep last night All this extra stress will have made you worse If you read some past posts on here you will find that a lot of us have detereorated because of stress

The only consolation I can offer is that I was in total agony with my first bout of PMR cried when I tried to turn over in bed in the morning couldnt bend at all in the morning stairs were an agony and if I sat in a chair getting up again was in doubt !! BUT once I took the steroids (20mg for me ) I felt great in 48hrs and felt much better on steroids than I did on Ibrofen

Hopefully your GP will start you on steroids if the bloods agree or refer you to a Rheumatologist if not ( I did see one privately as I couldnt have coped for 3 months unless I had taken to my bed ) so do let us know how you get on and best wishes from us all we know how you feel !! Mrs G

Hi Annie,

Oh dear, you sound so poorly and we all know what its like. One word of advice (from an experienced old PMRer!!). I was suffering almost identical symptoms, I was in awful pain, couldn't get out of bed or even turn over in the night. However, when my blood results came back they were normal! I then had to suffer in the way you are whilst my Doctor did lots more tests as she said it couldn't be PMR if my ESR and CRP weren't up. WRONG!!! In desperation I phoned a private Rheumatologist and she said it was quite possible to have PMR and still have normal or near normal bloods. She prescribed 15mgs Prednisolone and within 6 hours I was like a new person. If your bloods aren't up much you may have to relate my experience (and several others on this site) to your GP. My Rheumy bases her diagnosis on bloods, symptoms and reaction to steroids. I do so hope you get some relief soon. And don't worry about the liver function test, like Mrs. O I have one of these everytime I have bloods taken. You may have to be a bit insistent with your GP. Mine has admitted that she didn't know much about PMR when I first went to her and is on a learning curve. Keep in touch and I do hope you get relief from these horrible symptoms really soon.

Regards

Lizzie Ellen

Hi Annie, sorry to hear you are experiencing so much pain. I too am going through hospital/gp/blood test frustrations. My GP referred me to hospital last November, but when I got my hospital appt iin Feb it was with the wrong consultant, but he did order quite a few blood tests, about 6 or 7 I think, so that when I finally did get to see the rheumy, the results would be there waiting for him - but oh no, when I saw the rheumy beginning Mar, they had been 'lost', whatever that meant! So had to have some more bloods taken and he said he would see me in 2 months. Well that was 6 weeks ago, still not had an appt date come through yet, so phoned his Secretary - the answer machine - and left a message about the appt and wanting to know what my blood results were - but have heard nothing.

Unfortunately I do not have much faith in the rheumy who came across very arrogant. He's 'not sure' if I have PMR, but thinks it could be 'probable' as my ESR and CRP levels - taken by my GP - have been up and down and the pred helped - I was on 30mg beginning of year and am now down to 10mg. He said to reduce 2.5mg every fortnight, til I get to 7.5mg which I know many will say is too quick, but I am trying to 'go with it'. Some days are not too bad, but others I can hardly put one foot in front of the other. His idea seems to be to 'get back to basics' and then go from there. He did suggest I take anti inflammatories as well, but I have refused to do so as I have a hiatus hernia.

Saw my GP 2 wks ago who said he would chase everything up, and to see him at the end of Apr. I think I will be asking for a second opinion - privately - if things do not improve within the next couple of months, so watch this space.

Hope things start to improve for you soon.

Yvonne

Hi Yvonne My Dr offered to send me to a Rheumatologist as I have had some blips with this bout of PMR ( unlike the Ist bout ) but as my Dr looks after me so well regular 2 monthly or monthly blood checks depending how I am doing Blood Pressure checks Diabetes checks and I have had a Dexa scan I cannot imagine being looked after any better than that !! I shall only go to one if I keep on having blips I saw one the first time around

It does seem very strange how quickly you are coming off steroids and being told to take anti inflamatories also !!!!! I think a 2nd opinin is definately called for !!

Hope you and Annie have some relief soon

Hello Yvonne

It's so hard to believe that both you and Annie are not receiving the care that you should both be having and are entitled to. For the rheumy to suggest \"going back to basics\" and reducing the steroids so quickly and causing you so much unnecessary pain is just not on......steroids are not for playing with! Just to say I wholeheartedly agree with Mrs G - with the kind of treatment you have been receiving you definitely are in need of a second opinion. I do so feel for you and Annie and feel helpless in not being able to do something for you! Do hope you find a satisfactory solution one way or the other.

MrsO

Hi Yvonne and Annie!

You seem to have been messed about good and proper - but you also seem to have reasonable GPs. Why not get the info off the NE PMR group website about PMR diagnosis and treatment guidelines (MrsK has posted the links somewhere on this forum), print them off and take them to your GP - ask for a double appointment if you can have such a thing so you are not rushed ( I always could) and if not, get one appointment, hand over the info and give him/her time to read them before going back. There is no real need to see a rheumatologist before treatment providing the GP is confident about caring for you. Many rheumatologists TEACH the GPs that a rapid response to steroids is pretty much diagnostic of PMR whatever the blood levels and little or no response within a few days requires consideration of another possibility. I too have always had not just perfectly normal blood values, but very low levels except for one liver enzyme which is slightly up and this is something which is sometimes found in autoimmune diseases (although I have been given the don't drink lecture - doesn't make any difference (to the blood value)!

A rheumatologist who takes you down your steroid dose at that rate over such a short time is taking liberties with your health as he has no idea how your adrenal function will respond. Anti-inflammatories have very little effect in PMR and are generally seen as a no-no anyway if you are taking steroids because of the gastric side-effects (see MrsK's posts). I use ibuprofen in very small amounts, very occasionally, and do find them useful in certain circumstances - but if you have read my posts elsewhere you will know I'm really not a typical PMR sufferer in any shape or form except the symptoms and response to steroids!

I repeat my mantra: we're all different. The only things we have in common is the PMR and - mostly - that steroids give us our life back!

The best of luck, stand your ground,

EileenH

Hi folks

Sorry but am tied up with a launch in the North East so a swift reply.

The website you need is www.pmr-gca-northeast.co.uk

Under useful Information, the BSR guidelines issued June 2009 on the diagnosis and treatment of PMR.

Double appointment can be difficult, what I do is ask for the last appointment of the day, then you can yatter away, knowing that you are not holding up anybody but the guy who you are paying to listen to you. Yes, your GP. You are his employer. Great once you get your head around it.

Remember, the bottom line is, that even if your ESR and CRP are low and other things have been excluded, then a five day course of steroids, no more than two weeks (otherwise you become a long-term user) and if the symptoms are releived, its PMR. Warning, no known cause or cure, the medication relieves the pain, it does not cure it.

Mind I have two fantastic GPs and a brilliant Rheumy, but then I have a big mouth as well.

let us all know how you get on.