No blood tests from now on apparently, says my GP practice

[DJK99]

Hi all- I'm seeing my rheumatologist new week for urgent review and usually have the blood test prior, as do we all I presume - just called my GP service and was told NHS England has told them they can't do ANY routine blood tests now due to the virus (presumably completely focused on testing for that). Oh dear. Thankfully I had one done 5wks ago. Been in a right old flare prior and in between that but I took photos etc and can use those. I recommend you all do that with any symptoms, as presumably you won't be getting any blood tests either for a while? Sending you all a (6ft distance) hug. D

[Hidden]

I posted of similar the other day only they did run my pre rheumy blood tests - I just can’t get the results! Things are changing so fast on a daily - even hourly basis just now aren’t they?

What I’m wondering is what people do if they need regular monitoring for dmards and other eg warfarin, blood pressure, diabetes, cancer etc? If the arrangement is that the GPs are supposed to be monitoring us as part of shared care plan then what are patients who are already on these meds of about to start them expected to do? Stop the immunesuppressants or take them unmonitored?

I have second appointment with my new rheum on Tuesday and feel she probably won’t let me retry Mycophenolate under the circumstances - but we will see. X

[DJK99 in reply to Hidden]

Hey Twitchy - i would hope warfarin bods would still get their tests done... yikes. But yes, I'm on methotrexate and my neutrophils need to be monitored as I can often go as low as 1 (1.4 the last time) and also beign monitored for large red cells. Still, presume they know what they are doing/have to do as presume they would have said - but also test those on methotrexate etc. It is possibly only the tip of the iceberg... but then again, like our poor planet's 'bergs, it might be about to melt. All we can do is hope and look after ourselves and loved ones as best as we can. More hugs, D

[Hidden in reply to DJK99]

Gosh you’re obviously feeling as optimistic about the state of all things as I am 😉😷🦖🦕🌴🤗🤗

[Lupiknits]

I got my blood tests done at the Rheumy clinic on Monday. The place was empty. Fortunately I don’t need tests doing before I go, but anyone needing regular testing is scuppered unless measures are put in place. My sympathies

[DJK99 in reply to Lupiknits]

Hey Lupiknits. Ah yes - maybe my rheumy will send me across the road to the blood clinic on the day I see him. He's done that before when felt I needed an extra special test after seeing him. Thanks, I'm not going to worry - but there are many much worse off than me and am hoping as we all are this is all over and done with very quickly indeed. Hug, D

[Lupiknits in reply to DJK99]

I hope that’s the case. My near deserted hospital (on Monday) has down the corridor blood testing. Didn’t even have to queue.

[eekt in reply to DJK99]

Autoimmuners don't have routine or extra special tests, argh...they're essential for monitoring for disease activity and/or medications...and your rheumy will say so, an correct your GPs....

Hugs, hugs, we could do without the nonsense

Be well, stay safe xxxx

[DJK99 in reply to eekt]

oh. I must admit I didn't ask her to check -but seemed logical and she was quite adamant even though I told her it was for my rheumatology apptment. Will check again on Monday - but results won't all be back in time for my apptment now anyway. only got it bumped up today. But thanks eekt!! Stay safe and well too please xx

[eekt in reply to DJK99]

I dunno, sometimes those on the front desk are given too much power...routine bloods might be cholesterol, thyroid, iron and FBC on those not particularly at risk, just the GP wants to feel they've done something (or ruled serious illness out LOL!..)

Hugs, hugs xxx

[DJK99 in reply to eekt]

Yes..................... x

[Horsewhisper]

Hi D! Thanks for the heads up - something to hear in mind for sure. Hope you are doing ok? Xx

[DJK99 in reply to Horsewhisper]

Hello!! How you doing? I've been pretty up and down unfortunately. Quite a lot of stuff going on. So lots of hospital apptments coming up... the last thing we need ie have to travel to get there and obviously we're all sharing once in there. Think I'm out of the last big flare... it was all going on (apart from the worst bit... yearly mammo next week,mind you it didn't find it the last time so I have little faith!). Had dreadful throat/chest infection in Jan for weeks. Then along with whole bod inflamation in joints/muscles/tendons etc my hands/joints flared badly with lesions and couldn't bend some fingers. Rashes on my arms, forehead (haven't had for decades!). Generally feeling pretty pants. Got urgent apptmt for glaucoma (have "severe narrow angles" suddenly well found last September but my urgent referral was lots in my move - so I chased it am looking at a 30 wk wait now!!), urgent digestive diseases in 2 wks time (severe pain etc in stomach and gut kept me awake for weeks - but have found fermented food and a ton of high level live gut stuff has helped a lot), urgent ENT surgeon for hearing (it's finally pretty much gone in my left ear about 6weks ago with the ever present but much worse in past years, tinnitus). So,...... not much fun! I think I'm improving now...well I know I am - my hands are much better and the rashes, in the last few days. V happy about that! How are you doing? xx

[DJK99 in reply to DJK99]

Oh and also.... urgent referral for ultrasound on...my new... goitre! That's next Friday. My bod has been a little busy.... ;). x

[Horsewhisper in reply to DJK99]

Oh goodness, you have certainly got a lot going on D. It’s sometimes a constant stream of issues and symptoms, such a lot for the body and mind to contend with all at the same time. The GI tract issues I find are the hardest to cope with and I remember you are really good with your diet. I drink a daily glug of Kefir - looking to make my own so as to have regular supply and much cheaper too. I find the kefir helps to settle things. Sounds like you have the fermented foods on the menu too - I hope you get some respite soon. Me? Just ticking along trying to resolve a chronic long-standing headache, am tapering off pred at the mo, have a scan booked in a few weeks, they’re ruling out GCA, no eye involvement thankfully. Trying to keep as healthy and positive as possible! Take care in these u certain times and keep in touch 😘🤗

[DJK99 in reply to Horsewhisper]

Thanks J - what's GCA? x

[Horsewhisper in reply to DJK99]

It’s Giant Cell Arteritis - inflammation of the artery wall in the temple area. An autoimmune condition that can be treated with steroids. Will keep you posted xx

[DJK99 in reply to Horsewhisper]

Oh goodness. Yes, please do xx

[HazelW]

I had my metho monitoring blood test on Thursday & the nurse made me an appointment for next month's test

[DJK99 in reply to HazelW]

Oh well could be the receptionist didn’t ask me enough questions... or my little town is even more special than I thought! Thanks for that. Will check again on Monday. Hoping you keep well/safe

[HazelW in reply to DJK99]

Lol ! Good luck . 🤞

[Sara_A]

Amber/dmards bloods (which is what our blood test are known as for monitoring our drugs) are not routine bloods they are drug monitoring blood tests so still have to be done. I wonder if they didn't realise what they were for maybe??

They are saying that we can go longer between tests, so I just had an increase in mtx dose so would usually have a 2 week blood test then but instead just had a monthly one due to the circumstances. Am continuing monthly and some people are going longer etc.

Definitely recheck cos I think they have got it wrong as u do need monitoring x

[DJK99 in reply to Sara_A]

Hey Sara - thanks for responding. Yes, the receptionist got it wrong and I am having a blood test in next couple of weeks. It has been 3 mths now but then I’ve been on metho for 2.5yrs.. being monitored for long term neutropenia an more recently, large red blood cells too. We reduced my metho just before the virus hit as neutrophils had dipped further again, but depending on next test, wld like to increase again due to pain/inflammation - but will have to see. Hope the metho is working well for you. Keep aafe/well x