Methotrexate

[Phed]

Has any one had blood tests twice a week for the first 6 weeks when starting Methotrexate

[PMRpro Ambassador]

I certainly didn't. MrsNails is the mtx expert. But that sounds more like the protocol for use in oncology, not rheumatology, Who is saying 2x weekly?

"The American College of Rheumatology (ACR) recommends monitoring with blood tests to check the liver enzymes alanine transaminase and aspartate transaminase and levels of serum albumin, a protein made by the liver (every two to four weeks when you start MTX, every eight to 12 weeks in the third to six month of treatment, and every three months thereafter)."

creakyjoints.org/treatment/...

[Phed in reply to PMRpro]

Thank you for your reply. The rheumatologist at the hospital put it in a letter he sent to me when I started methotrexate, but I’m sure at my appointment before I started the methotrexate he said every 2 week for 6 weeks and then once a month for 3 months.

[SnazzyD]

I’ve known patients to have initial close monitoring of bloods when starting Methotrexate to check the response of the liver, kidneys and bone marrow. I don’t remember it being as frequent as twice a week. Glad they are bothering but not happy for your veins 🥴

[PMRpro Ambassador in reply to SnazzyD]

Oncology does checks at 24, 48 and 72 hours. But that's for relatively massive doses.

[SnazzyD in reply to PMRpro]

I saw those starting it for rheumatoid arthritis.

[Phed in reply to PMRpro]

I’m only on 15mg just once a week and having the blood tests done at the Doctors, for some reason I thought it was every 2 weeks for the first 6 weeks and then read my letter again from rheumatologist which said twice a week, the Rheumatologist nurse is phoning me tomorrow to check how I’m doing since starting Methotrexate (18th March 2022) so I will check with her, I don’t really fancy blood tests twice a week.

[Phed in reply to SnazzyD]

I agree twice a week is a lot, especially when my veins aren’t very happy giving blood.

[PMRrunner]

For me it was every two weeks for 6 weeks, then monthly for 3 months then 3 monthly unless the dose increases and then it's back to every 2 weeks for a month.

[Phed in reply to PMRrunner]

That’s sound a much better, that’s what I thought it should be and hopefully that’s what he meant and it was a typing error.

[MrsNails]

I had mine every two weeks & then monthly. Are you in the U.K? Do you have the information written down or word of mouth? Where do you have your Bloods done?

MrsN

[Phed in reply to MrsNails]

Thank you for your reply, I do live in the U.K. The word of mouth one was every 2 weeks and then when the letter arrived it said twice a week for 6 weeks, I think maybe it’s a typing error (or hope it is). I have my bloods done at our local doctors, I have a blood test there tomorrow morning and also an appointment with the Rheumatologist nurse (phone consultation) In the afternoon so I will check with them as twice a week sounds a bit excessive.

[MrsNails in reply to Phed]

Yep - check in with the Rheumy Nurse - they are an excellent source of information & will confirm either way. Good Luck

MrsN 🍀

[Phed in reply to MrsNails]

Thank you.

[PMRpro Ambassador in reply to Phed]

I wonder if someone said "bi-weekly" - because that can be construed as 2x per week or as every second week.

[MrsNails]

Let me know if you have any questions.

[Phed in reply to MrsNails]

Thank you I will, I appreciate your help and advice.

[Geordieland]

Good morning ☺️ I started Methotrexate on 27th Dec and was given blood forms for 2 weeks, 4 weeks , 8 weeks and 12 weeks . Was supposed to have a follow up appt after 12 weeks but no contact was made from the rheumatology dept re an appt so I contacted them and was eventually given an appt end of May I had to telephone them 3 times to report bad side effects - severe dizziness , nausea and upset stomach - no help from rheumatology at all so I stopped taking mtx after 10 weeks and contacted my surgery for them to get my blood results as I’d heard nothing . My ALT ( liver function ) had gone from 12 in October to 39 on the 7th Feb then 137 on 21st Feb !!!!! Obviously I have contacted the hospital to “ discuss “ ! My advice after this tale of woe is to check everything yourself and don’t rely on them getting in touch 👍

[Phed]

Thank you all for your replies. I have just had my telephone consultation with the Rheumatology nurse who couldn’t have been more helpful, she even knew I had been up the doctors this morning for a blood test, the good news it is every 2 weeks for blood test for 6 weeks and then monthly for 3 months, they are going to arrange a Bone Density Scan as I have been on Alendronic Acid for two and a half years so hopefully I will be able to come of that it the results are good, and a follow up consultation in 3 months time if I don’t hear anything from them I must ring to get them to chase it up, so in all a very good result today.

[MrsNails in reply to Phed]

The Rheumy Nurses are a great help & you can always ring them for advice - be prepared to leave a message as they might be in Clinic but they will get back to you.

You can have Folic Acid up to 6times per week if required but it is never taken on MTX Day.

Also drink plenty of water on the day you take it to flush it through your system.

Best of Luck

MrsN

[Hidden]

Be very careful with that medication. My mom had a bad reaction to it and warned me not to take it

[Phed in reply to Hidden]

Thank you for your advice, it’s really a job to know what to do, there seems to be good and bad reports on the medication, I have only been taking it for 3 weeks so I guess it’s early days for me to notice any side effects from it yet but I will be keeping a close eye on things to see if I do have a reaction to it, I have to take Folic Acid 2 days after the Methotrexate which is supposed to help reduce side effects.

[PMRCanada]

When I started methotrexate bloodwork was monthly…still is 4 months later.

[Suet3942]

I had them fortnightly to start with. Now every 3 months.

[Poshcards]

Yes, and then 4 weekly, now after 30 years, its 3 monthly as guide lines have changed x

[PMRpro Ambassador]

"Is it really medicine if it has bad side effects"

Depending on how any drug works it will have a range of effects. The desired effect is also a "side effect". How bad they are perceived to be depends on the patient - so don't throw the baby out with the bathwater. One patient may feel hair loss isn't tolerable - but the other "side effect" may be to save their life.

[Hidden in reply to PMRpro]

I am not where I want to be, Pharma free yet but that is my goal

[PMRpro Ambassador in reply to Hidden]

You will be one day - when you are dead if not before. Without pharmaceuticals the chances are you would already be long dead - why do you think life-expectancy is so much longer than it was 100 years ago? No corticosteroids or antibiotics to name but 2 groups that have made a massive difference.

[DorsetLady PMRGCAuk volunteer]

“Is it really medicine if it has bad side effects”….

Many medicines have side effects….are you saying nobody should take anything?

If so, I and many others on here with GCA would be totally blind without Pred….

[Phed in reply to DorsetLady]

I have read some really positive reviews on people taking MTX , as you say so many tablets have side effects, I just thought if I’m not willing to try them then I will never know if they agree me. I know I’m only into my 3rd week of MTX but I’m looking on the positive side that it will work for me.

[DorsetLady PMRGCAuk volunteer in reply to Phed]

Do agree, you have to try something to see if it works for YOU.

No good saying it didn’t suit my mum, brother, long lost cousin, next door neighbour or Uncle Tom Cobley…

Fingers crossed it does work

[Hidden in reply to DorsetLady]

I am taking that too. I question if it is the right solution for me because of the side effects.

Most people including myself tend to think in terms of the now rather than later. Much like corporate accountants. They ignore sustainability factors.

Is big Pharma poisoning me? I am beginning to become convinced of that. I desire more natural remedies today

[PMRpro Ambassador in reply to Hidden]

What everyone forgets is that even so-called natural remedies can cause trouble - if it is strong enough to have an effect on a disease, it is also likely to have other, less desirable, effects. And deadly nightshade is natural - but it will kill you.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I think we’d all like natural remedies if possible.

Many drugs are based on them, but more concentrated and easier to use -who nowadays can spend days foraging for poppies, willow bark or foxgloves when their extracts are readily available in a vial or foil pack!

Not sure that any plant could have saved the sight in my remaining eye…

[tangocharlie]

I'm going to be starting MTX by self-administered injection rather than the tablets - anyone else have experience of these? I'm pretty sure the blood tests will be every 2 weeks at first then every month, and I have to have a chest x-ray and bloods before starting.

[DAW28]

I had a blood test every two weeks when I started MTX until I got to 20mg weekly. Now I have a blood test every 8 weeks to monitor the drug.