METHOTREXATE

[SRIXON]

Hi I wrote a couple of weeks ago but I am looking for comments on the use of this drug for PMR.Saw Rhemy 2 weeks ago, he has recommended that after 7 years on pred and several relapses he wants me off pred and on the drug METHOTREXATE.

I am a little apprehensive as before its use noting i would be starting on a lower dosage increasing if it suits me.

1. Have to have a chest xray.

2. Pre Metho bloods.

3. Bloods taken every 2 weeks for the first 6 to 8 weeks.

Should I be apprehensive. Appreciate peoples experience.

Thanks

Carl x

[DorsetLady PMRGCAuk volunteer]

As you can see there are loads of related posts to look through …..and in previous post I linked the info in the FAQs… but you’ll probably get as many differing views as there are members on it..

It seems to be a bit hit and miss, it works for some but not all… but good news is, those it works for, it works well.

Case of try it and see…and hope it’s for you.

[SRIXON in reply to DorsetLady]

Fingers crossed I do hope so. Thx for responding x

[PMRpro Ambassador]

Well HE may want you "off pred and on MTX" but it may not work quite like that. MTX is often claimed to get patients off pred - in fact, it MAY get SOME patients off pred, it may help some patients to a slightly lower dose of pred but it doesn't come with guarantees. For some it works brilliantly, for others it just makes them feel worse. You have to try to find out where on the spectrum you will be. But the only constant is: do NOT allow your doctor to bully you into reducing the pred too soon or if you can't. Or remain on pred when it makes you feel rubbish. That isn't the idea ...

[SRIXON in reply to PMRpro]

Thanks for your comments. X

[Sharitone]

Didn't do anything for me, but didn't hurt either. Except - if you care about your hair, watch out! If it starts falling out faster than usual, you can be prescribed Vitamin B6 (I think!) up to 6x weekly, assuming you are having weekly doses of MTX.

I hope it works for you.

[PMRpro Ambassador in reply to Sharitone]

No - folic acid, which is the same as B9

[AtopicGuy in reply to PMRpro]

Indeed. Readers might be interested to know that methotrexate works by reducing the availability of folic acid (vitamin B9) for proliferating autoimmune cells. Unfortunately, however, luxuriant hair also requires fast cell growth, so hair loss can be a side effect.

Ironically, when excessive hair loss occurs, it can be quicker and easier to take extra folic acid than to taper down the dose of methotrexate which counteracts the folic acid! It's a balancing act!

Methotrexate works against rapidly reproducing cancer cells by the same route. I think it's remarkable that the same medicine can help fight tumours while suppressing the body's immune system at the same time!

[Sharitone]

😔

[PMRCanada]

I wouldn’t be concerned as all of the prep testing means they will key a close eye on how you are responding to MTX. The other consideration is you can stop taking MTX abruptly (unlike pred). And don’t start tapering pred until you’ve been on MTX 3 months.

I’m curious what pred dose you are on? If it a “low dose” the risk of side effects is lowered.

[SRIXON in reply to PMRCanada]

Thankyou for taking the time to respond it is appreciated. Been on pred since feb 2017 highest dose 20mg, have tried coming off pred I guess 6 times, went back up to 8mg 1 month ago after a torrid time at 3mg. Kind Regards Carl x

[PMRCanada in reply to SRIXON]

Of note, I was stuck at 9mg for almost two years. During that time I attempted to taper down 5 times, but always flared. So I eventually agreed to try MTX. I’ve had no side effects except some hair shedding. I almost down to 5mg, but it’s been slow going.

All the best if you decide to try it. You really won’t k is how you react to it unless/until you try it.

[SRIXON in reply to PMRCanada]

Agreed and again thanks. Kind Regards Carl. PS what part of Canada you in.

[PMRCanada]

I am in Southwestern Ontario but have lived in 3 other provinces as well.

[SRIXON in reply to PMRCanada]

Spent alot of time in Canada from 1995 to 2019, my last job being in Kincardine which I believe is West of Toronto. I lived in Alberta from 2003 to end of 2005 living 10k from Edmonton in a place called St Alberts lovely place.

[WaltzG]

On MTX instead of steriods. side effects wear off but make sure you are given same manufacturer each time since can differ a lot. For me it's working really well and back to full health good luck

[Hollybee21]

Methotrexate is working very well for me 🤞 I have had PMR for 15+ years and first tried Mtx about 10 years ago but upset my stomach, so gave up on it. This time I went on Metoject, no problems and for the first time down to 3 mgs, but on a very slow half mg reduction over the 18 months. Good luck

[cranberryt]

You didn’t say how much prednisone you are taking now. Many drs. push MTX even at low doses of prednisone. I was on 2mg at the last rheumy I saw and they still were pushing me to try MTX or a variety of other drugs. Also, what did your taper and relapses look like? Were they pushing you relentlessly to zero or did they give you plenty of time and space for a slow and steady taper to prevent those relapses? There can be a place for MTX, depending on the circumstances, but it is not for everyone.

[PMRpro Ambassador in reply to cranberryt]

And certainly not for someone down well below 5mg!! What are they thinking of?

[Angelsmummy]

Hi,sorry to say,it didn’t do much for me,but I did get CURLY HAIR!Had straight hair all my life.Hated it at first,but getting used to it now,haha.Good luck with the Metho.x

[PMRrunner]

I've had PMR for nearly 6 years and have been on methotrexate for over 3 years. In that time I have managed to slowly reduce to 3mg prednisolone but I suspect it will be a while before I get to zero pred if ever. Thankfully I now have a very understanding rheumatologist who lets me taper and my own pace and a GP who keeps re-authorising my prescriptions.

[KASHMIRI1]

Good morning I have found meth works quite well for me and I do feel my steroid reductions are a bit easier. The pre-testing is just routine and nothing to worry about and the blood tests mean they are looking after you. Have you been given folic acid?

[SRIXON in reply to KASHMIRI1]

I have taken Frolic acid in the past will see if its offered when stsrting this treatment. Thx for your input Carl

[KASHMIRI1 in reply to SRIXON]

Hope all goes well