Methotrexate and Blood tests?

[ShannonB]

I’m currently trialing methotrexate as an alternative to mycophenolate (which I have taken for years but has stopped being effective in managing my lupus.)

My bloods, which are normally very normal (even lupus is often seronegative), are starting to show up out of range on a few measures. The GPs keep dismissing and asking me to retest but every time I retest they are still out. I can’t decide if I should be concerned. Anyone on methotrexate to tell me if this is expected?

Haematocrit -out of range high

Mean corpuscular volume - out of range high

Lymphocytes - out of range low

Thanks in advance

S

[PMRpro]

I don't think those are a problem - except possibly the lymphocytes depending on which white cells are low. It is the liver values they are mainly interested in. Do they do a white cell count AND differential count?

However it isn't the GP who gets the say-so usually but the rheumatologist, GPs just facilitate the testing.

There is a big section on methotrexate in the FAQs on the PMRGCAuk forum and MrsNails on the forum has a lot of experience with MTX. Do pop over and have a read and ask her if she can help with any questions you may have.

This is a link to the Guidelines for monitoring methotrexate in shared care arrangements (where the GP is responsible for tests and prescriptions):

berkshirewestccg.nhs.uk/med...

As long as WBCs are above 3.5 X 109 /l (that isn't 109, it is 10 to the power 9, can't copy and paste it properly) it is deemed OK. Neutrophils should be above 2.

[ShannonB in reply to PMRpro]

Great thanks that is helpful. Liver tests look fine. I don’t trust that my rheumatology team is doing any monitoring of these. My care is split between two rheumatology teams and they seem to both assume the other is looking after me

[PMRpro in reply to ShannonB]

Left hands, right hands - no hands ... That really isn't good enough is it!

[Tanitani]

Are you taking Folate 1mg every day? Excluding the day yoi take Metotraxate? Small out of range results for those usually don't mean much, but since lack of folate influences MCV, and methotrexate i fluences folate you need to make sure you regularly take 1mg per day otherwise your hair might fall out. Those results could also indicate dehydration so im thinking thats why your doctor wanted to retest. If i was you i would start w folate, maybe test your folate levels?

[ShannonB in reply to Tanitani]

Thanks that’s good to know — I was prescribed 5mg folic acid the day after mtx but none other days. I think they all follow different routine. I’ll ask about that when (If)! I get another rheumatologist appt

[Tanitani in reply to ShannonB]

Just read that those two protocols are acceptable. It says 5mg is a minimum. Maybe you need more? Alsonit is better taken during the day...

[ShannonB in reply to Tanitani]

Good to know — I think you’re probably right

[PMRpro in reply to ShannonB]

Many people I know on MTX need 5mg of folic acid every day except the MTX day - some rheumies are very mean handing it out!

[ShannonB in reply to PMRpro]

Is there any harm in taking more?

[PMRpro in reply to ShannonB]

Folic acid? Not really - 6x5mg is the usual maximum, If that doesn't sort out the side effects enough you have to question whether MTX is the drug for you.

[Krazykat26 in reply to ShannonB]

I've been on Methotrexate since Dec 2019..I currently take 17.5mgs per week (started on 12.5mgs). Right from the start of taking it I was prescribed Folic acid 5mgs to take every day EXCEPT the day I take Mtx. Both my dermy n my rheumy have commented that I have low lymphocytes but they are consistently low so they don't seem too bothered.

I hope that Mtx works for you..it has turned my life around 💜🌈😽😽xx

[ShannonB in reply to Krazykat26]

I hope so too. Mycophenolate used to be my wonder drug but stopped working for me. So really hopeful. I’ve been tapering up for 8 weeks but started way down at 7.5 so now at 15 and working up to 20. I think some of my issues seem milder but you know how lupus is, need to look at it slightly longer term to know. 🤞🙏

[Sara_A]

I only take folic acid once a week it just depends on the rheumatologist 🤷🏼‍♀️

[C-aches]

Hi ShannonB, I started on MTX about a year ago, like you I started on a low dose and gradually increased to 20mgs, which I inject as the tablets caused intestinal havoc! My blood results were a bit off to start with, but have gradually stabilised as the Lupus has come under control. I also take Folic Acid 5mgs daily except on jabbing day. Hydroxychloroquine of course! One thing I wish I had understood from the start is just what a slow process this is, Hang in there and thinks should settle down eventually. With best wishes, Liz