Diagnosed with Sjorgens July 2023 and I started hydroxychloroquine in August 2023. I was told to have monthly blood tests and they would see me in February follow up after six months.
I've only just found out today that I was supposed to be calling a number after each blood test to inform nurses to look at the results! I thought it was an emergency helpline that the rheum consultant scrawled on a leaflet. Not one person in seven months checked,asked, or informed me differently.
It's my fault I didn't know, but I just don't want anybody else to go through the utter nightmare that I've had this morning of finding out none of my blood tests were being looked at and worrying my afternoon away.
Edit:thank you for all your replies!
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Quinni
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I’ve never heard of this, I’d assume that the GP if shared care along with hospital get copies of all blood test relating to your condition. In fact they must do here because they found my AKI.
Isn't it weird?! I'm based in watford now but they've told be a few times now they can't see my GP notes or don't allow the gp access to blood test forms. I think I'll have to double check what I'm being told as if seems completely wrong!
Now that does make sense . It might be shared care if GP does the bloods the GP sees the results but hospital doesn’t and visa versa. It’s a problem here now it’s codes it’s even worse. I get numbers from hospital for them and GP so one lot of blood and both get results. It’s madness and I think it’s because GP prescribes so has to check. And a funding dispute. I also get bloods done for Renal so 3 lots all the same and so I refused to have blood taken 3 times. I’d suggest asking GP because I only go every 3 months not monthly but you might well be different. X
Even when it was my rheumatologist responsible for my bloods, the hospital had a separate system, that flagged issues with rheumatology patients. I never had to prompt them. Now with shared care, my gp is responsible. I can see the results, and if there is anything wrong they’ll decline repeat prescriptions, till they’ve discussed with rheumatology. I’m only responsible for booking my bloods in a timely manner. Seems an antiquated system you have.
Wow! They told me it was to check my kidney and liver wasn't reacting to the hydroxychloroquine . I've never had any issues with those things before it's just my joints that hate me 😁I am a bit reactive to things prescribed in the past. A reaction to pethidine, tramadol, codiene and some drugs do not work on me like naproxen so maybe they were playing it safe with me!
Hi Helenlw7 I think everyone is different depending on what medication they take. Often hydroxychloroquine is taken alongside methotrexate which definitely does require blood tests.
I've had hydroxychloroquine and although I had blood tests I don't think it's always the case. Blood tests are usually checked beforehand to make sure your liver and kidneys work OK. If you have any concerns I'd just check with your rheumatologist. Do you have blood tests when you have a check up?
Don,t worry…if there had been anything unusual in your blood test results, the Laboratory would have informed your rheumy nurses & they would have contacted you & told you to repeat the tests. It happened to me recently when I missed a test completely.
I can only speak from 20+ years experience & I now trust the laboratories more than GPs or rheumy departments.
I have found thes days GPs appear to rely on rheumy departments & have absolutely no interest in RA treatment.,& those departments rely on the patients. Of course there are exceptions ….we can only speak as we find,
I volunteer in the pathology department at our local hospital. When I started I was given a tour of the department. I was completely amazed at how automated blood testing was. All the routine tests are done by a massive computer. Samples are loaded in one end and data is sent out automatically by the computer without a human even looking at it.
This is a large hospital so maybe smaller ones still use humans .
Gosh that’s really interesting. I’ve often wondered about how it works as I couldn’t imagine someone sitting all day looking at thousands of test results.
It really was fascinating. I too couldn’t imagine someone spending all day looking down a microscope counting blood cells but had no idea how it happened.
I can promise you they do its the hinge of my medical negligence case. And Ive already got the admission of near fatal error. They have parameters and must advise clinicians of results outside that parameter. Here the parameter was changed by a computer programmer and it was a long time later that the RA Registrar doing a routine look of all normal tests found to his horror my AKI was a GFR 8. At 60 they gat alarmed and 0 is death.
I don't remember any blood tests when I started hydroxychlorquine. I've certainly had them since I started methotrexate. The pharmacy team at the GPs certainly check to see I've had my blood tests before they issue the prescription for methotrexate.
My assumption is that most tests these days are processed automatically and the systems will "red flag" any results out of normal range.
Hi I am getting my blood tests every 2 wks just now for methotrexate. If I don't get the bloods done the chemist won't give me my prescription. Sometimes consultants just seem to think we know everything. I find it quite hard sometimes to keep up with everything. Take care my friend xx
Everyone should be asking for a copy of the shared care agreement, because there will be a section on there for patients. If patients aren't told what their part is to play, they can hardly blame us for getting it wrong.
I found our local shared care agreement both on my electronic health record (GP records, and they can't stop you from accessing your records now) and also on the hospital trust's website.
Sorry, I didn't mean that it is the patient's responsibility to ask for this, it is the doctor and nurses responsibility to give a copy of the agreement to us. What I meant is if they don't give you a copy, you need to ask for it so that you can hold everyone to account!
I’m on a DAWN program from rheumatology for my bloods. They send me a batch of forms so I’ve always got some to take to my surgery nurse each month for my bloods. The results are seen by my GP and the rheumatology team and I’m notified if anything is wrong. I also check myself online via Patient Access app. I live in Reading area and come under the Royal Berks Hospital. This has proved a good system as in the past I have been called if anything abnormal in bloods x
sorry to hear of your worries, it can be so frustrating when you find out this sort of thing. My RA team are in the ball and react quickly to blood tests but for endocrinology I have to call the consultant’s secretary every time I have blood tests to draw their attention to the results. It is worrying when ideally you expect every test you have done to be scrutinised thoroughly otherwise what’s the point of money being spent in doing the tests in the first place!
I hope the hydroxychloroquine is successful for you, I have secondary Sjogren’s and fortunately for me the Baricitinib prescribed for RA is keeping it under control as well and my eyes are not as bad as they have been. Mind you I have just had a retinal detachment and the surgery to repair it - a buy one get one free as the cataract in that eye was sorted out at the same time! 🫣
Thank you! I'm so new to all of this as my first consultant appointment was August last year and I've had zero information since. I'll be on the ball a bit more now for sure!
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Baricitinib again!...
He doesn't understand my RA
So back in hospital again...
Called helpline
