Hi, all. I said I'd check in with you when I received my blood test results. ESR is at 43, CRP seems to be normal. This was only read by the receptionist and I have to go in for another comparative blood test in 2 weeks. I can't call in to speak to a doctor as they are so short staffed that they're only dealing with emergencies. As I was told that I just had fibro 16 months ago, I have slowly tapered down to 4mg. I have been exhausted and in agony for months. I still feel angry at being fobbed off for a long time, as every time I called in to say I was in extreme pain, I was told there's nothing more they could do for me. I just don't want to wait another few weeks just to get treatment. This is simply unbearable. I was initially diagnosed with GCA/ PMR but diagnosed (eventually, after a long wait) as having only fibro by a rhumy and then dismissed back to my doctor. Im trying to get myself together at this time as I am fit to burst! Maybe Dorset Lady was right, and that I have untreated PMR.
Update on blood test results.: Hi, all. I said I'd... - PMRGCAuk
Update on blood test results.
Until proven otherwise - I think they have to consider PMR. Does it improve with a decent dose of pred? You can have both but everyone who has both has always said they can tell the difference.
From what I remember, I still had pain, but this current situation seems to be overwhelming. Beforehand, it was difficult to ascertain what exactly was going on. I do feel like I am as poorly as I was before taking the steroids. I do believe they helped with some of the pain though. Sorry I'm so vague, but I'm not feeling that great.
Not good enough- but you don’t need me to tell you that….trouble is ESR can be raised for many reasons, so can understand it needs re-checking..but ignoring your constant pain is dereliction of duty.
Do you have enough steroids to try the flare remedy - and see if that helps - see here -
healthunlocked.com/pmrgcauk...
I am tempted to follow along with the flare remedy as I am at the stage where its unbearable. The problem is, when I have my next blood test in 2 weeks, then will this be definitive proof of my pain and ERS rates go down? Will they be angry for taking it into my own hands? Let me say that I don't care if they do, but it may affect the way they deal with me...or is this standard practice? Tg
The trouble is, if you take pred and it helps, the ESR will also go down and they will try to make out it was coincidence. They have to see it getting worse without enough pred - and MAYBE then they will get the message.
I know that this'll probably be the case. I suppose I'll just have to try & hang in there. I just hate this desperately unwell feeling. Thanks for mentioning this!
I has to take 4mg pred extra last night, as I was in so much pain & sickness that my sister was trying to get me to the A&E. My temperature was so bad, I had the window open and the fan on full. Coupled with ice bags on my body. I have taken 8mg this morning and asked for the doctor to call me back today. I insisted I wasn't going to be fobbed off again. Im at a point here where I don't care about their secondary blood test as they should have enough evidence already. They have put me back in my treatment and have constantly denied I have an autoimmune disease. The doctor that originally diagnosed me left about a year ago. As they have let this go out of control, I am now holding them accountable. Sorry for a further rant, but enough is enough.Hope you have a great weekend and thank you, as always, for your help
I was fobbed off for over three months. I was not even getting dressed in the end I was in so much pain. In the end I went to see a rheumatologist privately. It looks like we can’t get decent medical or dental treatment any more unless we privately for it.
Sorry to hear this. I paid for my own rhumy too,, because the waiting lists are so long here, but within a fraught 10 minutes of a one sided "discussion" he diagnosed me as having fibro as I was too young at 60 to have PMR/GCA. He then pushed a bank card reader in front of me to pay him £200 for the privilege. He was very rude too as I wanted to discuss the probability of having PMR, which he immediately snapped "no you don't have it". Its so disheartening not knowing who to turn to. I have said before that I've spent my life savings trying to find a definitive diagnosis and treatment. Now, as I definitely can't work, I'm on the poverty line. Normally, if I'm pushed into a corner, I fight back, intelligently and in a civilized way, but I can't even muster that much energy currently. This has bought me to an all-time low.
I am so sorry. The trouble is there seem to be an awful lot of inadequate doctors around.
I was told by 2 GPs to take paracetamol one said for 2 weeks, the other for 4 weeks! even though I told them I knew I had bad pmr recognised by my friend's symptoms. So went to A&E for a whole day in desperation. They tested everything and said definitely PMR and sent me home on 30mgs of pred 7 years ago. Nowadays, expect it would have been 15mg.
Oof! £200 just for the privilege of feeling insulted. I'm sure DL and PMRpro will be along to confirm that many people in their 50s are now developing PMR - so he shouldn't be using that as a criteria for ruling it out. Are you able to change your GP and find someone with a more proactive approach?
People under 50 as well….
Yes, they both have told me this right from the start, and that's what I was trying to relay to that private consultant rhumy. He wasn't having any of it. The doctor I have now is new to the practice and seems to be okay. I have been told by family and many others in the area that the situation is the same with their GPS as they are under such awful stress and doctor shortages, so it'll be a struggle to find that proactive doctor anywhere...without paying for one.
Hi, sorry you are having a hard time at the moment. It took 3 and a half months for me to get a diagnosis for PMR and to be prescribed steroids. The practise nurse seemed to believe I had a similar problem with my knees that she had due to all the standing she did with her job! I refused to see her again and saw several GPs who suggested pain killers and exercise and it was the first time I had really come up against ageism and probably sexism. The nurse suggested that what can you expect after age 60!
Living alone and being very independent didn't help. However I belong tor Beneden Health care a friendly lower cost form of private health care which meant I could ring and get advise from a GP the same day which helped. I also swallowed my pride and borrowed a friends husband who drove me to a couple of appointments. The final GP checked to see if had been given a blood test for inflammatory markers which I had not and it was finally discovered. I remember struggling to open and close the heavy door to her office.
I also got support from a very special Daisey cat who laid against my head on my pillow during those long sleepless nights. I think it might have helped to take a friend in with me for back up to see the doctors when I was first ill. Do you need to take someone along with you perhaps?
It was suggested to me it was age so what could I expect - I was 52 at that point! And was at the gym most days. Took 5 years to get a label and the rheumy wouldn't have it was PMR, that was obviously beneath him and he wasn't interested in the response I got to 15mg pred in 6 hours.
5 years! Shocking!
And I worked out for myself what it was likely to be!
You couldn't make it up could you!
sorry to hear this, & you won’t want my reply! I’ve had fibro for 12 years, & have been in continual pain…chronic pain, since 5hen. There is no ‘miracle drug’ like steroids for fibro, there are other drugs they can give you, unfortunately I cannot take them. I’ve had PMR for 3 years, & it’s completely different! I am on Tranadol & still in pain. The pain clinic told me there was nothing else they can do. The exhaustion from fibro is very tough & unrelenting. If I coukd choose just one, I’d have PMR, that’s for sure! I saw a rheumy lately, he re-diagnosed my fibro, said there’s nothing he can do for my pain, & offered me the latest booklet on fibro. Fibro, it seems, is diagnosed by rheumy, but then totally handled at GP level. There are drugs you can try, but then there’s little to do. If you think you have PMR then I would say a week at a higher dose would give the answer…if certain pains disappear, then it’s PMR. Pred/steroids do nothing for the fibro trouble I have. Sorry if this is blunt, I don’t mean it to be!! Others will give you a better idea of what to do if it’s PMR. But fibro is totally different. If it’s fibro you gave a chance of getting PIP allowance, but given your age I think it would be ESR, I think they call it…allowance because you’re too sick to work.
You mean ESA? You can get ESA and PIP together.
Have you thought of ringing the Rheumatology Nurse and having a chat with her (they should still have your records). I find them very helpful. Good luck.
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