Hello, just had a phone call from surgery telling me to book a monthly ESR blood test as seems my doctor has realised I need this, have been getting blood tests but seems they were for other things.
Is it usual to have this every month, I started on Prednisolone December 2022 and I am slowly tapering from 15mg and on 13.5 now, hoping to start 13mg on May 1st.
This site has been such a help to me, so glad I found it
I did early days - had GCA with complications, but that was way before Covid. It was used - along with how I felt to decide on whether I should embark on next taper. Later on went to 3 monthly.
From comments on here blood tests seem to be few and far between for many post covid and depending on doctors.
Regular blood tests are useful for your records - and to monitor trends but they aren't the be all and end all that some doctors think...they have to be considered as a part of the management tool.
Thank you , just wondered why he suddenly upped it to monthly testing as not seen it mentioned before.
Maybe someone read some guidelines!!! They are supposed to keep a close eye on patients on steroids but a lot of things went by the board during Covid. Perhaps it is a sign things are returning to normal.
Monthly is only really necessary if you are reducing monthly but checking the level before the next step down is always a good idea to be sure the last drop took you to a dose that is still enough. So since most doctors will be telling patients to drop monthly - it is right enough.
Thank you, yes you might be right, our surgery is suddenly working well again it seems and yes maybe he is looking things up as it was all a bit of a muddle at the start, diagnosed by phone given prednisolone but no information at all and was lucky I found this site it has helped so much reading all the information on here, thank you all so much.
Read the guidelines! Heaven forbid….😳
Hope does spring eternal!
Maybe just realised it was an oversight before - or new eyes looked at your medical record and queried why they hadn’t been actioned before.
Doubt it’s anything sinister..and really it’s what they should be doing anyway 😊
Thank you, you might be right, I get quite a lot of calls from their pharmacist as blood pressure is getting higher, maybe she has something to do with it, won't worry about the blood tests becoming more frequent then.
Could be pharmacist checking up -and no don’t worry - so many struggle to get them. Although as you say, things are improving-slowly.
Yes, things are improving here at last, thanks
My pattern with PMR was just like DorsetLady’s. The only attention I get now with my Rheumatologist and GCALVV diagnosis is blood tests when she feels that they will tell us something else, maybe 3 monthly.
Thank you for reply, been getting tests but suddenly he seems to want a monthly one after five months, so wondered why.
My GP told me to have a blood test monthly (before reducing my dose - although I'm not going down that fast now!) but on my third test the practice nurse said she didn't think I needed to have any more. When I was first diagnosed by a rheumatologist the blood test he asked for showed no inflamation, so it may be that future ones didn't either.
So I'm not having any further ones after asking a GP in the same practice if they agreed, which they did.
Hi, thanks for replying, have been having blood tests just not monthly, seems my doctor may have been doing some research on PMR as he didn't seem very knowledgeable about it apart from giving diagnoses on phone from symptoms. Surgery now seems to be back working better so maybe things are improving, seems from reading on here so many doctors don't really know a lot about this illness, maybe I have got mine doing a bit of research which would be good.
Good news if your GP is doing some research on PMR -encourage that as much as you can - and maybe refer them to charity -membership is free for GPs etc -
pmrgca.org.uk/professionals...
I am hoping he is, difficult to find out as never see him to speak to he rings me if he want to check up on anything, will bear in mind what you just told me about membership for GP's, thanks.
Since I was diagnosed with PMR in May 2021, I've had monthly C-Reactive Protein tests, first ordered by the GP who diagnosed my condition and then continued by Rheumatologist.
Thanks for reply, I think my doctor has been finding out a bit more on this condition as they were not this frequent before . Suppose it can only be a good thing.
Mine have been monthly for virtually the last three years
Thanks, was just wondering why mine had been increased but many say monthly so won't worry about it now.
I must be the luckiest NHS person ever. Where I am we have a walk-in phlebotomy clinic - take a ticket sit and wait for your number to flash up. The system works well but on Tuesday, I walked in and took my ticket only for my number to flash up immediately. This on top of receiving every Rheumy appointment it what seems the whole Country. Hmm, perhaps I should buy a lottery ticket?
I’m the second luckiest! Feel I’m being well cared for, regular bloods. Rheumatologist sends me spare blood bags after appointments and has been in email contact between appointments when I’ve had queries /concerns. Good GP service. I can get tests done at docs. Test results from GP are uploaded on NHS app immediately. Such a post code lottery though. I keep on top of my records which helps me feel I’ve a modicum of control. Never thought I’d be doing such medical admin since retiring.
Mine has really improved this year, can get blood test at surgery near me, very handy
If my GP got in touch with me about anything, I'd be amazed .........
Mine seems to have got it all together a bit more now compared to a lot I read about
My surgery sat I have to have a blood test every two months before they will issue repeat prescriptions! Just off now to get it done
I don't have that problem just all my repeats are for different dates of the month, makes it difficult, always at the chemists
I would discuss with GP (ha ha) -it’s not rocket science to get all meds on same date - just a bit of thought -and a little bit of work from them.
yes I must see what they can do about it, just now trying to get blood pressure down as it's shot up on steroids so constantly changing dosage and different strength tablets.
Well that doesn’t help of course, but hopefully it will settle soon .
yes, I hope so, thanks
Wow how luck are you! It's more than 6 years since my Dr requested I had a blood test, or even suggested a review,
That doesn't seem right , can't you ask why ?
Im not sure there would be an answer, it's not really a problem for me as long as I keep getting my repeat prescriptions, I would hate to have a Dr who seemed to think it only lasted 2 years and tapering was the be all and end all. Left to my own devices I have tapered to 1mg and am happy there. I've tapered off many times over the years only for the pain to return a few weeks later so it's a condition I've just got used to. That's not to say I don't wish it away.
The ONLY thing my Dr is very good at is issuing repeat prescriptions for pred and for that I suppose I should be grateful?!? He thinks I'm doing a marvellous job at managing my PMR. You couldn't make it up really could you?
I’m hoping you don’t have any long term condition - if you do you should have a medical review annually according to NHS.
Although if you never have any blood tests how would your GP know?
I do have Type2 diabetes, (in remission) COPD, stage 4 kidney disease and PMR. I was referring specifically to PMR , although COPD is the only one reviewed annually to
Thanks for clarification -but if they are doing blood tests for other health issues why not add in ESR and CRP.
Cost I guess…
I also wonder - my surgery seems to be very efficient recently. They regularly have trainee GP's (registrars) which I like. I reported swollen and painful hands and was sent for Xrays and blood tests after a telephone call with the registrar which was fine. Phone call this week for a telephone conversation unless I would prefer a face-to-face (oh yes, every time if I am given the chance). At the face-to-face the registrar gave a very thorough examination (45 mins!), discussed bloods (CRP is 13, ESR is 25, both raised since February so am in a flare and hands and wrists show osteoarthritis), then consulted my regular GP and my Pred taper was stopped and dose was upped by 1mg. When I got home I realised that I should have suggested a week at a higher dose but we'll face that after the next two blood tests (monthly).
So, a good week with the surgery.
Sounds like a good surgery, face to face, can't remember when last had that though do get phone calls from them.
I have been doing monthly blood work for years as I am unable to reduce successfully. I only reduce when the ESR and CRP are in the normal range.
I can see the results online the day after so it is very convenient.
So far after 4 plus years I am still stuck at 14 mg.
Good luck
I realise now that it's not anything to worry about having monthly blood test, so many have said they do as well, shame you can't get lower after four years.
I get blood tests at rheumy appointments, but they are every 4 months. Nothing from GP and was even refused when I asked for one. Now suddenly they seem to want to test me all the time, at least monthly. I had a routine test in November which showed lymphocytosis so a repeat was done so they could do a more detailed analysis as hairy cells were seen! All further tests have been normal (phew) but maybe that's why they want to test more often now. I also had to see the nurse for a blood pressure review, (150 over 80 so she repeated it 3 times and it went up every time but back home it was 139 over 75) . Then next week I have a medical review with another nurse. They do seem to be upping their game, even though we're very short of GPs.
I have had monthly bloodwork from the very beginning (5 years now). Results go to both my rheumy and my GP. Once a year I have more extensive bloodwork to monitor Vitamin D, cholesterol, blood glucose.
When first diagnosed with PMR over five years ago, I had blood tests for Inflammatory Inducators (CRP and ESR) every two months. My GP would then telephone and discuss my Pred dose, usually adjusting downwards according to results. It feels now it was a bit like ‘the blind leading the blind’.
NOW no-one at the Surgery seems to bother. I have not had a blood test for three months and know, when I ring to book one, it will take weeks to wait for it - currently five. Apparently it is the Surgery’s budget for blood tests that dictates how soon a Phlebotomist can be booked to take our blood.
Things all went amiss with regular tests following Covid and I now never get the same GP looking after me. Last week apparently they had 36 Emergency Appointments available (that’s when you want to see a GP as soon as possible) and over 200 patients who called in for these. It really is a bun fight now to get to see any Doctor - and by ‘see’ I mean an initial phone consultation.
Poor you, that's awful now after all this time, are they ever going to get back to normal, there really is no excuse for hardly any appointments every day, I do hope it all improves soon.
"there really is no excuse for hardly any appointments every day" - if you have only a limited number of doctors, there is also a limited number of appointments, Many of them are already working 12 hour days.
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