Blood Tests

[Pippah45]

Hello lovely people I hope everyone is enjoying the sunshine. My brother has decided to get on my case (again. he has GCA) and is horrified that I am not having regular blood tests as I decrease my dose of pred. I haven't had a blood test in over a year - but I am quite happy on 7mg of pred and reducing very slowly. The surgeon who is going to give me a new hip was quite happy too. Question is should I try and get a blood test. I did ask a couple of months ago and was told I had to book a blood test online. I am normally fairly computer savvy but the online thing is defeating me so I gave up my quest! Before Covid my surgery had a walk in blood clinic so it was really easy to get done.

[PMRpro Ambassador]

Really not the end of the world because symptoms always trump blood results. If you are doing fine at 7mg I wouldn't worry as much as he is.

You SHOULD be getting a basic set including Hba1c (blood sugar status) and liver and kidney function every 6 months but I only get one once a year from the GP and if I see the rheumy (which I don't very often really) even though it is really easy here - I just have to ring the GP and then get a hospital appointment now (since Covid it isn't turn up and wait any more).

I really object to the "online only" concept - I know how to but absolutely hate it! On the phone is bad enough!

[jinasc in reply to PMRpro]

After a bit of a ruckus with my GP - we ended up laughing - he is now going to see how they can perhaps make it better for 'oldies' who are not online to get onto the prescription telephone.

I did tell him to get 'press 5' on as a queuing system is better than permanent dialling and wearing out your fingers. I live in hope.

[Telian in reply to jinasc]

Our surgery has a queuing system and it is magic - no matter how many are in the queue you get answered. Was 45th in the queue and answered within 7 minutes. Very well organised they are.

[prunus in reply to PMRpro]

I have held out about prescriptions with the surgery after hearing of people younger than us having problems with going on line. I photo copied and handed in as usual. The consequence now is that my surgery is giving us - or the pharmacist - paper ones which say "age exempt" !

[PMRpro Ambassador in reply to prunus]

I don't mind the doctor sending it directly to the pharmacy as an e-script - provided she does which somehow she didn't last Friday so that means another phone call. On a Monday ...

[Koalajane]

I am type 2 diabetic and although I have been in remission from the type 2 my diabetic nurse is happy to do my review every 6 months instead of every year so I can have the full set of blood tests at this time, including my ESR

[DorsetLady PMRGCAuk volunteer]

As others have said, symptoms (or rather lack of them) are the key, inflammation tests only corroborate what you probably already know ...but long term Pred users should be having other tests as described by PMRpro .

Am assuming because he has GCA and on much higher doses his GP has been more diligent re tests - mine was early days.

[Pippah45]

Thank you everyone - I have both PMR and GCA (although the GCA didn't feature on the recent referral letter to my hip surgeon!) My brother has gone down the Methotrexate route for the last 18 months or so. He was diagnosed about 2 years before my journey started.

Last time it was tested at least 18 months ago - my Hba1c was one point short of Diabetes - 41 was it? I think 42 declares you diabetic. I did ask if there was anything I should be doing and GP listed all the foods to avoid which I am already doing! I will persevere and try and get another test. I am relieved that others don't like the online thing either!

[PMRpro Ambassador in reply to Pippah45]

If your Hba1c was borderline/rising then your GP is rather at fault not to be checking that ever few months - 3-monthly is ideal but you do need to know!

However - 41 is borderline pre-diabetes, not diabetes.

diabetes.co.uk/what-is-hba1...

[Pippah45]

Yes thank you I am afraid a lot of things are getting neglected in the current climate.

[hurryupharry]

I have recently had surgery, as part of the pre op assessment I had blood tests. Also the anaesthetist was knowledgeable about both pmr and gca, he raised my pred dose after the op. I would speak to your consultant and ask about pre op assessment.

[Viv54]

Yes i think you should get a blood test, if only to check everything is in order ! We are so Lucky in Dorset . Just ring and get an app booked with the nurse at the Drs ok , good luck Viv .

[Pixix]

When I was borderline diabetic they phoned me with blood test appointments every two months. Once I’d beaten it into submission I have them on/around my birthday and then there’s always been a reason to have them some other time in the year (inflammatory arthritis was the last). I’m surprised being prediabetic isn’t causing blood tests every three months until solved tbh. My surgery has a wonderful diabetic nurse...she gave me my second jab in salisbury Cathedral some weeks ago, too! Hope this helps!

[Hildalew]

Why is he horrified? What is he afraid of - on your behalf? Is he having regular blood tests because of his GCA? Is there something he learns from them that he thinks you ought to know about yourself?

[Pippah45]

I think he is horrified because the NICE guidelines - or some other link he sent me specify that blood tests should be taken on each reduction. He was also horrified when I upped my pred dose (with help from this forum) after a flare caused by dropping the dose too quickly on Rheumy orders! However Rheumy upped my dose even further proving I do know my own body somewhat! His consultant wanted him off pred asap but he has had quite a few issues since. He doesn't like the DIY method of consulting with other fellow sufferers on line - which in my opinion for PRM/GCA have been invaluable. I was familiar with online help before for Thyroid issues. My brother has many of the signs of Hypo but has failed to get his T3 tested - I don't know anything - it seems - despite being living proof and 7 years his senior! He is just looking out for me but I needed to convince myself I was on the right path!

[PMRpro Ambassador in reply to Pippah45]

" His consultant wanted him off pred asap" - and as we keep saying: what is the point of putting your patient on pred to prevent them losing their sight and then trying to get them off pred altogether before the disease is at a stage where you can do so?

And PMR is very often quite different from GCA even though they are closely related. It is very unusual for GCA to last for many years - but PMR does.