Methotrexate monitoring/dosage booklet: I carry a... - PMRGCAuk

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Methotrexate monitoring/dosage booklet

JanetRosslyn profile image
13 Replies

I carry a blue steroid user card (PMR 3 years, Prednisolone)

Three months ago I was diagnosed with GCA too and started Methotrexate. Should I have been given a monitoring/dosage booklet? I have fortnightly blood tests but don't get given any results, other than one phone call from the Nurse when my calcium level was just below the normal range "but nothing to be concerned about".

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JanetRosslyn
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13 Replies
Marijo1951 profile image
Marijo1951

I was first prescribed MTX at the hospital when I went to A&E with a GCA flare, and was given an information booklet about it. After the first time I asked my GP for a repeat prescription they sent me a monitoring booklet, but without a proper explanation of what exactly it was for. I still have it somewhere in a drawer, but have never done anything with it. I have my blood tested every month (originally every fortnight) I have problems sometimes because the hospital I go to isn't my local one, so my GP's computer system isn't linked up to theirs. To have the results passed on to the GP, I have to ring up the rheumatology nurse at the hospital and ask her to fax the results to them. Occasionally, when I can't get hold of the nurse for some reason, it's actually been easier to have two blood tests at different hospitals to satisfy both the hospital and the GP - crazy situation!

JanetRosslyn profile image
JanetRosslyn in reply toMarijo1951

Yes, my GP can't see the hospital results so he panics at high white blood cell count and sends me for retest, then consultant says its not necessary as it's due to meds. The booklet sounds a good idea to avoid this sort of problem, just wasn't sure if everyone got one.

PMRpro profile image
PMRproAmbassador

I think MrsNails is the lady to answer your question - so if she is so busy with xmas that she doesn't get here to day, do ask her in a pm. I'm fairly sure she has said in the past that there should be a monitoring booklet to be filled out with blood monitoring results so they are easily available for patient, GP and specialist team so the situation Marijo mentions is avoided. I personally would not accept "OK, nothing to worry about" without seeing the numbers!!

JanetRosslyn profile image
JanetRosslyn in reply toPMRpro

Thanks. Yes, when I have bloods done at my GP practice I get a printed copy of the results, but the current fortnightly tests are at the hospital for the rheumy and I'm not getting any results... "We'll only call you if there's a problem.". I don't like it.

Hi Janet

When l first went on MTX l had a booklet which l always took with me to various appointments as l lived on the Welsh/English Border.

I used to ring for my Results & despite them saying they were ‘normal’

I insisted on the Numbers, l eventually got a little system going with the Phlebotomist at the Surgery.

They NO longer issue the booklets, so l have made my own Chart in my diary. Numbers are important to us as l only ever dropped if my CRP wasn’t rising, l am always symptom led but l liked the confirmation also.

I’m ‘trying’ to get access to my Blood Results Online at the Surgery but talk about slow.....

Currently, l’m feeling very unwell & having a flare so my Numbers are important to me & also because l have liver issues as well.

JanetRosslyn profile image
JanetRosslyn in reply to

Thank you so much for taking the time to respond, especially when you're so unwell. Im going to follow your lead and will make a chart and push for the figures :-)

in reply toJanetRosslyn

I sent that before l’d finished! Santa’s little helper needed instructions 😂

I do get phone calls from one of our Doctors when my ALT goes up but l’m on the ball with ‘My Numbers’ as it’s so important...

Being on Pred & MTX makes it more important to be your own Expert in your Condition....

Wishing you all the Best for Christmas & 2020

Happy to assist anytime & you can always PM me as Pro said.

Kind Regards

Angela 🎄

JanetRosslyn profile image
JanetRosslyn in reply to

You're a star! Thank you.

JanetRosslyn profile image
JanetRosslyn in reply to

Meant to ask... What is ALT?

in reply toJanetRosslyn

The alanine aminotransferase (ALT) test is a blood test that checks for liver damage. Your doctor can use this test to find out if a disease, drug, or injury has damaged your liver.

In my case they believe it was the Prednisolone that affected my liver but l’ve also had Chemotherapy while on Prednisolone......

So sometimes the odds are against you!

JanetRosslyn profile image
JanetRosslyn in reply to

Thanks for that. I have a lot to learn about this MTX monitoring. So sorry things aren't going well for you at the moment. Here's to a happy and healthy 2020 x

SnazzyD profile image
SnazzyD

Hello, when I was nursing I took blood frequently from people on Methotrexate. As there was shared care between GP, hospital and other agencies all of them had a book to record their results and they took it everywhere.

JanetRosslyn profile image
JanetRosslyn in reply toSnazzyD

Thank you. That makes sense. Shame they don't do it now, but I'll be proactive and make sure I do it myself, especially as I'm currently attending three different hospitals as well as my GP and they don't seem to communicate other than by letters/reports sent by post, with all the delay that entails!

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