Blood tests

[Caulkhead63]

Are you surpose to have blood tests every now and again? Because I haven't had any since first starting this journey in August . I have started tapering from 15 mg . I have good and bad days depending how much sleep I've had .

[DorsetLady PMRGCAuk volunteer]

It’s certainly useful as a baseline -but the practise seems very variable around the country -particularly since 2020 when the medical world went into tailspin.

I also always had my inflammation checked on monthly basis early days with my GCA (for obviously reasons if you’ve read my story) -which later amended to 3 monthly.

Personally, I don’t think 3 monthly is an unreasonable expectation nowadays…but when tapering symptoms-or rather lack of them is key.

..and what consists a bad day for you?

[Caulkhead63 in reply to DorsetLady]

If I've had hardly any sleep and get up feeling very wobblyly. But still have to force myself to get going as I have work. I do early morning cleaning so things are very hard sometimes

[DorsetLady PMRGCAuk volunteer in reply to Caulkhead63]

Unfortunately lack of sleep is a very common side effect of Pred….and when you’re working not easy to catch up during the day.

I do feel for you, I feel awful with lack of sleep, always have even without GCA/PMR added in.

Have a look at this -and maybe consider asking GP for something to help -

healthunlocked.com/pmrgcauk...

[Caulkhead63 in reply to DorsetLady]

Thank you x

[PMRpro Ambassador]

I think 6 monthly should be mandatory - inflammatory markers if they mean anything for you, Hba1c for diabetes monitoring and the usual basics while they are at it. And absolutely essential if you are on any other medication. Plus weight and BP - but that would mean someone had to SEE you.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Nurses and HCAs seem to be carrying on as usual, it’s the GPs that seem to still be in hibernation🤔

[PMRpro Ambassador in reply to DorsetLady]

And some chump on Sky News telling people to go to GPs for urgent treatment - he is a CEO, bet he doesn't have problems seeing someone!

[Caulkhead63 in reply to PMRpro]

I know I've hardly seen mine! I had a very quick phone call 3 weeks ago she couldn't wait to get me off the phone! Didn't seem to want to listen to me at all ! I heard her tapping away but then just said carry on and don't let myself stiffen up to much. I thought the GPS had to do more face to face now??

[DorsetLady PMRGCAuk volunteer in reply to Caulkhead63]

F2F?…. Yeah right!

[Caulkhead63 in reply to DorsetLady]

LOL 😆

[PMRpro Ambassador in reply to DorsetLady]

In your dreams ...

[Jigsawlass in reply to PMRpro]

At our surgery they have been back to F2F for over a year at least. The system works well , you call the surgery, book a phone consultation and the Dr decides if they need to see you. They keep appointments free for that purpose . I have had a couple of phone calls for different things and as a result the Dr has arranged for me to see him . Other phone calls have dealt with problems without needing to see a doctor . You can also book F2F online . Very efficient. I am aware that not all surgeries run like this but it is good to know that there are plenty that do !

[PMRpro Ambassador in reply to Jigsawlass]

Mine has always been F2F - even during the first panic and lockdown but you had to phone first as we don't have an appointment system, just turn up and wait, You waited outside to be let in as the previous patient left, Even dentists have worked normally after the first month and lockdown when it was emergencies only.

[scrambledegg]

I have had I think 2 blood tests in the last 7 years with PMR. Thank goodness I requested one 18 months ago at my annual review as my cholesterol was too high. I think I will make this a regular annual request having read this thread. Done by a nurse of course so the necessary face to face not a problem. Needless to say my last 3 annual reviews with the GP have been on the phone.

[Jigsawlass]

I see my rheumy every 3/4 months and have blood tests before every appointment. They are done at the hospital.

[Retallack]

Only had blood tests on diagnosis 3 years ago. GP rang me about 18 months ago to ask about my dosing regime. After a long discussion with me explaining DL's tapering regime and all the advice and information from this wonderful group she was happy to leave me to it. Currently on 1/1.5mg.

[JuneWalker]

I was diagnosed in April with GCA, complete bloodwork weekly for 4 months, then every two weeks until December. I am now going once a month. My rheumatologist and I receive the blood results at the same time, if there is any change she notifies me.

[Broseley in reply to JuneWalker]

That sounds very thorough. I also have GCA and am supposed to see rheumy every 3 months, but it's more like 6. I get a blood test when I go there but my GP never got the results, only the letter from the rheumy which I don't think they read. I recently had a medication review with the pharmacist at the surgery, over the phone. It was a brilliant opportunity to raise this issue. He said he could arrange it for my hospital blood results to go on my record. Next thing I get called in for a repeat blood test as my lymphocytes were too high on the last hospital test (back in September). Now back to normal, thankfully.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Any letter from the hospital should go on your records automatically …. If you have access to digital copy of your records you can also view it…Patient Access, Systmonline or similar…..and NHS App..

[Broseley in reply to DorsetLady]

Not any more. I used to be able to. See the notice below from our surgery website:"Important - We are still having issues with Patient Access and being able to fully access your records. We apologise for the delay in rectifying this but it is a National problem that is being looked into by higher management. As soon as we have any update, we will let patients know via our website. Many thanks for your patience. Ellie, Office Manager"

It has been this way since September. I feel blinkered. I don't trust the receptionists when you ring for results as I have previously been told "all normal" then been called in to see the GP because it's not.

Our surgery takes about a month to read hospital letters, if at all. (They lost hubby's and we're still trying to get copies to his rheumy who wants his CT scans and X Rays.) I never had access to these on the NHS app because the surgery would not allow it. I have always, therefore, asked for a copy from the hospital.

[Broseley in reply to DorsetLady]

What I actually meant was the lab results. I used to be able to see these on my record (see comment below) but results of tests done at rheumy appointments are only put on your records as part of the letter content, not as lab results. Does that make sense? The rheumy only comments on any results he thinks are notable. I want to see the whole lot!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Yes I do understand -and it is very frustrating that the 2 systems are integrated.

Years ago I completed a survey re same thing -when it was in the pipeline -but it obviously was all too difficult and under resourced as usual…

Not sure what you can to, apart from state you want to see results -and have a general whinge at all concerned -but that gets tedious after a while!

You are entitled to see them - but actually doing that is a lot easier said than done .I know…

😠

[JuneWalker in reply to Broseley]

Yes my rheumatologist is very thorough. In Alberta we are able to register online which enables me to see bloodwork results the same day, plus any medications we are prescribed. I am able to compare my results with prior bloodwork and know if the results are normal or not. Great info tool.

[Broseley in reply to JuneWalker]

That's brilliant. The last blood test I had, at the surgery, results took two weeks. When I get a test at my rheumy appointment, I have to wait 6 weeks or more for his letter to 1. Arrive at the surgery and 2. For someone to read it, file it and log any notable comments. That's why the pharmacist arranged for the lab results from the rheumy to be shared with the surgery.

[Bcol in reply to Broseley]

No Rheumy, everything done at surgery, normally have full results in two days or less.

[JuneWalker in reply to Broseley]

I am curious as to the meaning of surgery, which has been in many posts? In Canada, surgery means an operation.

[Broseley in reply to JuneWalker]

It's the GP practice building, where you go to see your regular doctor.

[JuneWalker in reply to Broseley]

Thank you. Now I understand.

[DorsetLady PMRGCAuk volunteer in reply to JuneWalker]

Has two meanings - either operation (or procedure as we also say) or the organisation (practice) or building where you see GPs (general practitioner or PCP as some North Americans say)

[tempusfugi]

Just by looking at the answers thus far, you can see how it varies throughout the UK. It's a pain that it's not all the same everywhere ie f-2-f appointments with Drs, as in the good ole days!

I have had to request blood tests from my surgery, since developing PMR this year. Haven't yet seen my GP, or any GP come to that, but admittedly have been fairly well monitored by a Physician's Associate, though I've had to be proactive too. And I took myself off to see a Rheumy privately, because I had cancer worries.

We simply have to be proactive nowadays in order to get anywhere.

[HalleysComet in reply to tempusfugi]

I wish the Secretary of State and all his highly paid civil servants would read about this dog’s dinner of a service and knock the various NHS Trusts heads together.

I too have had no access to test results since the Covid outbreak (coincidence or what) and face to face GP appointments are like hen’s teeth. Yet when I go to the surgery to speak to a receptionist - to get a sample bottle or blood paperwork- I see empty corridors, empty seats and a Marie Celeste atmosphere.

[tempusfugi in reply to HalleysComet]

I do appreciate what you mean HalleysComet. I keep trying to be objective when discussing the NHS (many of my friends feel exactly as you do). I know the lack of Drs is a major problem and it does depend where you live, imo. I live in a relatively small village on the coast in the UK and medical staff don't want to live here, it seems. But when simple procedures like blood tests are not effected, the old adage 'Prevention is better than Cure' seems to go out the window.

[DorsetLady PMRGCAuk volunteer in reply to HalleysComet]

Unfortunately as we all know, the NHS has been in decline for a number of years, way before Covid hit.

Hubby and I had numerous discussions about mismanagement back in the day when he was in and out of hospital - and he died over 9 years ago. Brilliant in reactive situations (as he often found out) but not good on being proactive.

It’s too big, too unwieldy, too many managers and no good throwing money at it willy -nilly, it needs to targeted.

Those at the top may be over paid civil servants, but there are an awful lot struggling on a daily basis financially and mentally but still trying to provide as good a service as they can.

[Rowergirl]

I have had blood tests done every month since diagnosis in Nov 2021. I have only seen a GP F2F once, when I was diagnosed and have had one telephone conversation with a different GP to discuss my DEXA scan, and I also discussed reducing my prednisolone slower than they were suggesting!. I thought they might want to see me at some point, but no!.

[phebamom]

Monthly with Actemra infusion. Once every tree months with oncologist for MGUS, every 6 months with primary for A1C, and kidneys.

[diana1998]

I have a full blood test every 3 months, no problem.

[Hidden]

Blood tests are useful to ascertain the level of PMR infection. I had quite a few to start with and I kept an eye on the ESR and C-reactive protein rate. There was then quite a long gap until I saw the rheumatologist and another gap afterwards. I requested one when I had a lot of pressure round my head and found that my ESR had increased. I’ve had an ultra scan and am waiting for an ex ray of my neck. My previous rheumi has left the hospital. I’ve found that my doctor is so busy that it’s better to ask for a blood test. If your symptoms are troubling you, it’s wise to let the doctor know, as things can drift otherwise. I’m in the UK.

[PMRpro Ambassador in reply to Hidden]

It is useful if it works - but my markers never budged with PMR. Symptoms are far more reliable for some of us!

[Hidden in reply to PMRpro]

Hello,Certainly, if I haven't felt very well I'm inclined to ask for blood test as, a higher infection rate from me seems to alert the doctor. I started off with an ESR of 104. I hope that your health has been better this year or, if not, that it improves in the next. Thank you for all your help and I wish you a Very Happy Christmas and a Fortunate New Year.

[ab58sf]

Actually, my doctor reviews them about every quarter checking the inflammation markers.

[Orange_2022]

My GP said I needed to have a blood test before each reduction in dose (e.g. every month) so that's what I'm doing. However, the rheumatologist didn't say that although the initial blood test showed no inflamation.

Good luck and hope you feel better as time goes by.