Hello. A thought recently. I am no longer under rheumatology which my GP knows as they had the same letter I did “can do no more for me as I won’t take methotrexate” yet my prescriptions still state. “Reducing as rheumatology” therefore I think the GP assumes I’m being monitored by them. I’m not and haven’t been for over 12 months. Am now down to 5mg doing the dead slow taper and thinking should I request bloods as for all I know could have had liver, kidneys affected by pred along with diabetes who knows.
I think I know the answer is yes but reluctant to go as have had to do battle all along to reduce slowly which is working for me. Dont feel like a lecture. I’m also knackered for want of better word so wondering if it’s the adrenals I’ve read about trying to come to life. Do most people have regular check ups re blood tests ? Off to work soon so any replies gratefully received and answers when able !
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They are SUPPOSED to monitor with at least 6-monthly general tests - electrolytes, blood sugar and Hba1c, blood count and renal and liver function as a basis. That is simply good practice for any long term patient. More important at higher doses.
I get tests before every rheumy appointment - get the request form together with the next appointment at the end of an appointment. But I'm not in the UK. If I happen to go to the practice to get something from my GP she often decides it is a long time since bloods were done (if I haven't seen the rheumy) and does them. The anticoagulant drug I am on requires a renal check regularly - at the very least before the annual renewal of the approval and she does other things as well while at it.
As PMRpro has said you should have checkups as a long term patient…. I have annual blood tested [as patient on BP meds] usually around birthday… that protocol was instigated some time ago.. but it may be dependent on age.
Just looked at your profile, so you may be too young… but no harm in asking…
I have just requested a full blood test including HbA1c, electrolytes, thyroid - in fact everything as it is 12 months since my last one. I actually saw a GP yesterday (a first since beginning of covid) and she felt my request was 'reasonable' so now have to wait until 7 June for the actual blood test. I'm sure you need tests every year at least but it seems to me that they don't do them unless pushed. At least it will let you know where you are and what action you might need to take. As for lecturing, mine don't - probably because they are too aware of what they have missed or neglected to mention in the past. Hope it all goes well and you are pleasantly surprised.
Hi. Ah not just me then who has been missed. I just get apprehensive as I had to write a letter stating I wasn’t being listened to etc and self advocating due to the you are too young and steroids are evil rhetoric and trying to get me off them resulting in yo-yo-ing. Even after the PET/CT scan showed it to be PMR. Since then I think they are leaving me to own devices and I’ve not wanted to rock the boat either. But am concerned something could have altered in which case I should find out. Thanks for your reply. Hope you are ok too
Most of the time at my low doses I've had tests done every six months, although a couple of times I went a year - but my only medication has been pred, no other meds for other conditions, and always only through my family doctor. You're definitely due for a work up.
Only just moved doctors so no long term experience with present ones but it's looking good as already had a full set of bloods and check up done (see an earlier post). My old surgery certainly had me in for bloods and check up every twelve months as a regular event and generally when/if I ever went in about anything they would usually/often say, "as you are here Peter we might as well do your bloods". Which in reality meant I was probably checked every three or four months. I never had to chase or push them for anything.
I'd be too nervous to go ahead with any Pred reduction without knowing what was going on in my body. After my first big flare back in 2021, my rheumy ordered 4 weekly blood tests of full blood count, ESR & CRP as a guide for tapering and this regime is still the same 3 years later with a few extras added to it - liver & kidney function, bone panel, lipids, as problems in those areas arose too. This was mainly because my previous GP was negligent in picking up abnormalities, setting my progress back , causing hospital stays, etc. I'm really grateful to have these now, they've helped me understand what's going on, and let's face it these days you can't always rely on clinicians to do their jobs properly. You lot are so brave!
thank you all for the input. Finally had bloods done after it took the surgery three weeks to call me back. Results today. Had CRP was 4.8 doctor said would like it to be under ten ideally between 2 and 7 and doubts will ever be normal. He was great. I was ready for battle as had to self advocate all along. But he said it’s fine I agree with you. Heard of the dead slow method etc. you are on 5 now if it takes another 2 years so be it. Also tested kidney function, thyroid cos why not, full blood count and the diabetes blood test all normal. He also apologised said should have been tested every 3 months and will ensure it happens. I also told him didn’t like the rheumatologist who was a really stroppy Mardy so amd so cos I wouldn’t do it her way. Thanks to all of you for encouraging me to get checked.
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Naive question - should I be pain free on Pred?
Should I be worried?
Immunosuppressed
Reducing below 10mg - should I be optimistic or play safe?
PET scan results and thoughts please :-)
