Blood work

[ali5son]

Hi

How often should you have your blood work done. After diagnosis in June only had it taken 2 times due to high white blood count. Now taperered from 20mg to 9mg wondering if safe to go lower is it reasonable to ask for test to just check my levels

[DorsetLady PMRGCAuk volunteer]

Hi,

I always had my bloods done on a monthly basis in first year or so. Bloods on a Monday, doctors appointment on Thursday, and provided I felt okay and blood alright I reduced on Friday! Mind, GP was a bit twitchy after her mis-diagnosis etc

As we say symptoms are the key in the reducing game, but it’s useful for you to know what your bloods are, if you’re that way inclined. They do lag behind symptoms sometimes though.

As I got lower, and changed doctors, we agreed every two or three months would be enough. The first time I asked at new surgery the receptionist did ask why - so I told her I needed them to monitor the level of Pred I required - never queried it again.

[ali5son in reply to DorsetLady]

Thankyou Dorset Lady. My blood level had been 76 after few weeks at 20mg pred 4 then month 15mg pred 8 then as tapering 12 said that as long as I was under 20 that was fine. Last bloods taken end of July

[DorsetLady PMRGCAuk volunteer in reply to ali5son]

The Pred should be keeping ESR somewhere in the teens or thereabouts. Some people’s are much lower, but after the initial highs and then very low as the Pred kicked in, mine varied between 9-15.

Now post everything it’s around 20.

[ali5son in reply to DorsetLady]

Thanks DL don't know what I would do without this form.

[PMRpro Ambassador in reply to ali5son]

Yes - it is all very well to say "if it is under 20 it is OK" - but since your ESR went considerably lower that is YOUR normal. The range of 0-20 as being normal is for a large population of people - and your normal is somewhere in that range. But your normal seems to be well down in single figures - and the fact it is rising steadily 4/8/12 suggests the inflammation isn't QUITE being cleared out each day so, like a dripping tap, the bucket is filling up. You will eventually start to have symptoms.

That is the reason for regular blood tests, you can track what is going on if your blood markers are meaningful. Mine aren't - stuck at 4 on a permanent basis!

[ali5son in reply to PMRpro]

Thankyou PMRpro will ask for blood work to be done. Very grateful to this forum and the valuable information.

[Hidden in reply to DorsetLady]

Lucky you DL. My. Lot at our surgery insisted that they would only check bloods every 12 months. How stupid is that. They seem to think PMR is like having a cold.

[PMRpro Ambassador in reply to Hidden]

Having PMR may or may not be like having a cold - but being on pred isn't. It is irresponsible to refuse to check bloods more often since pred can lead to developing pred-induced diabetes at the very least.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Well that’s bordering on negligence.

[HeronNS]

Mine was done every month or so for about three months as we got me on the road to recovery, and now it's every three months, nearly two and a half years along.

[ali5son in reply to HeronNS]

Thankyou HeronNS think I will get Go appointment and get them done

[HeronNS in reply to ali5son]

My doctor is a bit scattered, and I seem to remember it was my suggestion to return every three months. The way things work here I tend to get my requisition slip at the appointment, have the tests done three months less a week later and then see her a week after the tests. I hope your system is a bit less clunky. Right now because I've had a minor flare she wants me back in a month. ☺

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Hope things improve for you by then.

[HeronNS in reply to DorsetLady]

Thank you. It was easily sorted. Three wasn't enough but at four I feel like I did at 1.5 several months ago, so hope I can get back there. Already starting to get those little purple bruises again....

[Ladybird25]

...and here I am in the hospital coffee shop having just had my bloods done! My ESR and CRP are always quite high, so I've been sticking at 11mg; however I thought I'd try 10.5mg a couple of weeks ago. It's amazing the difference 0.5mg makes and I've been feeling just a little bit more symptomatic with the slight reduction. My inflammatory markers appear to be quite sensitive and reflect variations in my symptoms, depending on my Pred dose. Hence my decision to get my bloods checked today. My GP gave me several blood forms (just ESR) for me to use at my discretion, so if it's increased, I'm going to pop back up to 11mg.

As DorsetLady said, I need the blood tests to monitor the level of Pred I require. The main problem is trying to persuade the receptionist to let me have a printout of the blood results!

[ali5son in reply to Ladybird25]

Yes think I will ask to get them done

[DorsetLady PMRGCAuk volunteer in reply to Ladybird25]

I always asked for the readings for ESR - surgery didn't bother with CRP no matter how many times I asked.

If you don't ask for actual figures they just give you the doctors comments - which is usually something like "satisfactory" and probably isn't even your GP!

[Ladybird25 in reply to DorsetLady]

My usual (more dynamic) GP, who is away on maternity leave, always checked the CRP, but the chap I've been seeing only checks the ESR.

I can often check the results online, but they don't always get uploaded, in which case I have to ask the receptionist...

[RheaV in reply to Ladybird25]

Here in Ontario we're able to access our Test results online.

[Jackoh]

ClaireJG - don't know if your GP surgery like mine but we now have the opportunity to access our patient notes on the internet system. On there also we re- order prescriptions, make appointments etc. I therefore am able to check all my blood work on line. I did have to go into surgery with a form of indentification to request this. Best wishes Jackie

[Ladybird25 in reply to Jackoh]

Hi Jackie

Just seen your post (after I'd posted a reply to DorsetLady). Yes, they've got "Patient Access", which is really useful and usually pretty reliable for the blood tests, but as I said, a bit inconsistent. I make appointments and request repeat prescriptions, but I've just had a challenging time persuading my GP to update my online Pred request to two months supply as I pay for my prescriptions. I was paying £8.60 every month. It's not worth me getting a pre-payment certificate as Pred is the only regular medication I take. I take Evacal on prescription, but for some reason I seem to have about six months supply of that!

Take care. 😄

[Jackoh in reply to Ladybird25]

It is so ridiculous isn't it? Sometimes I feel we are either being treated as irresponsible adults or imbeciles !! Just makes sense to have two month script not like you are itching to take more Pred!!!

[Ladybird25 in reply to Jackoh]

Exactly! I'd initially requested it in the little free text box and the pharmacist told me that they never look at those boxes...

[DorsetLady PMRGCAuk volunteer in reply to Ladybird25]

Out surgery has patient access as well. But according to the receptionist you can’t access test results unless your own G.P. has okayed it! Apparently some patients wouldn’t understand them - duh!

Didn't like to point out I was 70 not 7!

[Ladybird25 in reply to DorsetLady]

They don't seem to realise that we would either ignore them or not request them if we didn't understand them or had no interest in them. We ask to see them because we understand them and have an interest in them.

It's reminiscent of the days when the doctors didn't tell you your diagnosis. I think it's still considered (by some) a bit "taboo" telling patients exactly what's going on with their health.

[daworm in reply to Jackoh]

I am also, the complete report..it's very nice to be able to do that, my dr used to say, "your numbers are good" now I can see them for myself, especially my TSH..some experts like a much lower number than what my dr considers good now I can see the actual lab readout.

[Lyn_seaside]

Had bloods done right at the beginning but never since. This has been a three year journey for me and now been off Pred for six months. I always just worked by the symptoms and sorted myself out and told my GP when I needed more Pred. It seemed to work!

[ali5son in reply to Lyn_seaside]

Thanks Lyn

[ali5son in reply to Lyn_seaside]

Hi

Still work job share 2 x12 hour shifts so not sure if just sore after a long shift or PMR

[jevuki]

I also have my blood taken monthly the doctor is watching everything