I am seeing GP for results of 1st blood test after ? whether PMR. Receptionist told me they are back and marked as “normal” (full blood count, liver,kidney function) with ESR marked as “satisfactory” at 20.Not sure how up on PMR my GP is - but should I ask to see a Rheumatologist I’m wondering. Pain-wise, it has subsided again to more or less normal. No painkillers needed. Have had pain since last October though on and off. I am thinking if I’m ok now - to just wait a month or so and see how I go before referral. But am aware that IF it’s PMR there’s the risk of GCA. Thank you to DL and others who recommended either trying steroids for a week to see if things improve - or taking painkillers to see if it helps - but my pain has lessened to such an extent I’m not sure what is the best course of action. Any advice again please?
Blood tests : I am seeing GP for results of 1st... - PMRGCAuk
Blood tests
I really think you should go & see your GP as sometimes ‘Normal’ can be interpreted differently!
Don’t just take it at Face Value & you can discuss the next steps or a wait & see approach.
Kind Regards
MrsN
Sometimes with some people, the ESR and CRP come down and then never move........... either way. That does not mean you don't have PMR.
The last thing I would do, is take the word of a Receptionist, what might be normal to her......might not be to a GP. The receptionist will be lucky if she has even heard of PMR.
Please do as Mrs Nails has said.
I had a run in with a receptionist right st the beginning of my pmr journey who read my results and said they were normal. I already had a gp follow up appt booked and it turned out my results had not been seen by a doctor when the receptionist decided they were qualified to read then to me!! I have never trusted them again and have had far too many run in with them than should ever happen. Speak or see your gp and never take a receptionist word on what us normal.
That is dreadful! It goes back to what we said before about some Receptionists thinking they can give out medical advice 😲 downright dangerous! I intend having a good chat with my GP! Thanks for more good advice.
Unfortunately we seem to have quite a few in our practice!! But like I have said before they fear me more than I them!! I did throw in a comment to gp that if it happened again i would have great pleasure in reporting the whole lot of them!!
I’m sure they wouldn’t want to be affected by a negative report to Care Quality Commission?
I am a barrister and my gp knows I also used to work within the nhs as head of a legal team so I know the threat was taken seriously. But I occasionally remind them just to be a bitch!!
Doesn’t hurt to keep ‘em on their toes!
Keeps me amused if nothing else!!
Hi YBB. In defence of receptionists, who are damned if they do and damned if they don't! I was a receptionist for many years...
Not a Rosie Rottweiler type, I hasten to add😜
We never ever gave an unauthorised result to a patient.. If the results hadn't been screened by requesting gp, we sent through a message for comment... When this was done, the patient was contacted with appropriate comments ...
I realise there are those who think they know it all...
Many GP Practices are manned by competent 'frontliners'. Not an easy job a lot of the time...
I do agree, results should never have been given to Fergus unscreened ....
Hope Fergus gets a dx tomorrow.... Lena 🌻 😊
I agree there are some fantastic receptionists and I had no problem with them at my previous gp practice. The trouble is it only takes one bad one to give receptionists a bad name. They do a bloody good job dealing with lots of angry and ill patients and I wouldnt personally do the job and would take on a bad tempered judge anytime over doing their job. Unfortunately my practice has employed some complete idiots and they have the inflated opinion of themselves that is actually dangerous for patients. If receptionists keep to only passing on tests that doctors have seen and commented on then this is fine. I am sure you were never a rottweiler.x
Absolutely right....
It is downright dangerous for receptionists to overstep the mark like that!
Most patients were lovely, but, a small percentage were a 'challenge'... Some could start an argument in an empty room!! And the violence was another story...
I'm curious, did you have many bad tempered judges🤪
The whole legal world fascinates me...
I am all sweetness and light😋
There are enough Rosie 'Rottie's' around....
Take care.. 😊🌻x
There were a couple of judges that used to make even the most hardened barrister curse and wish they had stayed at home!! Some become god like and untouchable but most are reasonable. Strangely I met an old judge who i head butted with fairly often come out of the sauna/steam rooms at the local very posh health club my grandson has his swimming lessons at. Trouble was his shorts were ruched up in his bottom and I nearly burst out laughing! He recognised me which was worrying but OH said he probably has nightmares about me still!! Its a strange environment to work in and we develop a strange sense of humour as well!! Well that's my excuse for being as mad as I am anyway!!
Love it 🤣🤣😂😂
Is that the first test of markers? If so given 20% never get raised markers as even go would call it then it doesn't discount PMR...yet. if not, then you still need an explanation for how you feel even if it's episodic. I didn't feel terrible all the time pre DX. I would get say bad feet for a month then it would ease. Then my legs went weak and stiff. Then I couldn't get stuff out of cupboards...could be fine the next day or several weeks after these symptoms....which I ignored as I have fibro too. Then I got fatigue....together with legs and shoulders making me walk like Frankenstein. I finally went to drs. She said mmmm. Shoulders sounds like polysomething....take these steroids for a week. Pain eased within 24hrs. I established it was PMR and here we are. So make sure you see the Dr and don't minimise your pain, work on the basis of worst symptoms. "Normal" means nothing unless you have a chart of what the ESR and CRP were for you pre symptoms. 20 might be high for you.
I too had no markers for ages but I was, like that, different things, used to have to put my arms down if i was using a hairdryer and rest, also thinking the fibro was getting worse. Feet, legs, hips, all different bits joined in. Worse fatigue. Really is a weird condition!!!!
I still don't have full ability to raise my arms. I can raise one at a time but leaning and using gravity but I could hold anything head high. I have got to say duloxetine which I got for neuropathy in my feet has eased some fibro pain some of the day. I think. 🤣🤣🤣 Weird condition(s).
Yes, first test of markers. Once again, thank you soooo much for these helpful replies. I don’t want to take a hosp appt if I don’t need it. Already I have been twice this year - first for back and hip pain and then for shoulder/arm pain. Both MRI’s were “normal” and that’s why Ortho Consultant said PMR should be investigated. However - wouldn’t that have shown up as inflammation on MRI?
As I am relatively pain-Free at mo -(yay!) i had thought maybe it won’t come back. Reading about your episodes though - I obviously shouldn’t take my present situation for granted.
Not on MRI but research on another type of scan which escapes my mind is being tested out. Symptoms, bloods and pred us the usual protocol but my doc gave me steroids, blood tes next day and follow up after 2 to 3 weeks.
PET? Positron Emission Tomography??????
Perhaps...it looked at fibres. Maybe I am mixing research up.
Why can’t patients have PET scans to determine PMR/GCA - does it all come down to the cost? It would identify straight away what the problem is wouldn’t it?
What sort of pain are you getting without taking any steroids? You may have been something else if the pain has nearly gone away without any pred.
20% of PMR patients never show any inflammation in their blood tests. Are you on Prednisalone at all? If your symptoms are receding untreated then maybe it was a virus or something. My key diagnostic clincher was a dramatic improvement on 20 mgs of Prednisalone.
No not on Pred. Am having 1st appt with GP tomorrow after bloods taken. Not a virus I don’t think as I seem to have episodes that last 4-5 months then recede.
Glad you had a dramatic improvement of 20mg Pred. Don’t want to take that route unless bad pain returns. Thanks for reply. Take care 😊
I have PMR and have NEVER had raised blood markers. My GP, Rheumatologist, Neurosurgeon and Pain Management Consultant have no doubts about my PMR diagnosis. I am one of the 20% Sheffield Jane refers to.
Don't listen to the Receptionist and good luck on your journey.
Really??!! I automatically thought the markers would shoot up so I’m really learning from all you lovely people. I suppose I will have to wait and see if/when pain returns then try Pred to get a definite diagnosis. Maybe I’m living in cuckoo-land with this theory - but time will tell. Thanks for you reply 😊
My markers have barely been raised but I definitely have PMR ,so I'm one of the twenty percent, hope you get A definite diagnosis soon x
During a flare my esr and crp tests are always high, when 'not' flaring - my esr and crp are normal
I think of it as active and/or controlled. When your pred isn't at a high enough dose or is non-existent then the PMR GCA is most likely to be or become active and, in my case, inflammatory markers are raised. When the pred dose is high enough to control the PMR then my markers start to drop. What you are trying to do is control it until it's inactive, as you slowly manage and taper the pred and see if the PMR has gone into remission, at least for a while. I have to think of it that way. If I am in a battle its not with the pred...its with the PMR. But I don't like the idea of a battle so I take pred to give me a life while PMR burns itself out.
Like Oxford I have never really had raised ESR or CRP. I have GCA and PMR. On dx my ESR was I think 18 which is the highest it has ever been so unless you know your norm it is impossible to tell if your ESR or CRP are raised unless they are extremely high. My GP was also under the wrong assumption that if the numbers were low then your PMR can’t be as bad as the other person whose numbers are high. Wrong!! Amazing the wrong ideas that they have.
Crumbs - I’m more thinking along the lines of being referred to a Rheumatologist then. Thanks 😊
If you are currently not having any pain, wait to see if it returns before making that appointment. It is very true that inflammatory markers are not always elevated. But if they are normal, and you are not having pain, be happy. If you have GCA coming on, you would feel it.
Watchful waiting may be appropriate if your pain is bearable at present and continues to lessen. But discuss it with your GP - taking with you all you have learned here.
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