Methotrexate?

[Kingfan]

Methotrexate? Seems scary

This is my first post. My rheumatologist wants to start me on this in a couple of weeks after 2 years on pred. Can anyone give me their experience.

[Hidden]

Hi Kingfan

I am on Methotrexate & infact had it increased today to 15mg weekly.

I have written a lot on the Subject of Methotrexate & will be updating my Story in due course, so l will send you the links later. I shall also be writing a Post later.

What dose of Prednisolone are you on now for your Consultant to recommend Methotrexate?

Kind Regards

MrsN

healthunlocked.com/pmrgcauk...

[Kingfan in reply to Hidden]

I am just about coping on 6 mg. I've tried to get lower, started on 25 originally. up and down for past12 months but struggled. His idea is I take both for 4 months (closely monitored) then see if we can reduce the Pred. I have had a lot of side effects from the Pred and am worried about the methotrexate.

[PMRpro Ambassador]

Two years is early days - though a lot of doctors still believe the idea that PMR only lasts 2 years. In fact only about a third of patients are able to get off pred in 2 years - that leaves a lot of us! The median duration of management with pred is just under 6 years and really 4 to 5 years is a much more realistic time to look at.

I tried methotrexate - I couldn't cope with the side effects, not the usual ones of nausea but muscle and joint pain, bruising and hunger, I gained 2 lbs in 4 weeks! All it did for me in that time was cause symptoms that are usually blamed on pred - but which I have never suffered with either prednisolone or prednisone! But it is unusual.

[PMRpro Ambassador]

Forgot to say - if you use the Search box at the top right of the screen and type in methotrexate you should get a list of past posts. It helps to use the extra search criteria and restrict it to just PMRGCAuk'

[Kingfan in reply to PMRpro]

Thank you for quick response, I will consider All info I get over Christmas haven't got my head around it all. He did acknowledge PMR can last many years. I told him about this forum and how it had helped me understand what was happening with my body. My blood tests showed heightened levels about the same as when diagnosed. I think I am only just realising this is a chronic long term illness. I must have been in denial all until I found this forum. Bit depressed at moment. Doesn't seem fair does it. I know I'll get some support on here though.

[PMRpro Ambassador in reply to Kingfan]

Unfortunately - no-one ever said life was fair But we're here to hear you xxxx

[Kingfan]

Some days good, some not. Suppose that's life 🤷‍♂️ xx

[scats in reply to Kingfan]

Nobody here will disagree with that!

I have been on pred for 4 years and unable to reduce below 10mg when my rheumy suggested methotrexate. I really didn't want a new drug as I was managing the side effects of pred quite well. I managed to persuade her to my way of thinking with the information I had found here. It's worth finding out as much as you can as we all tolerate it differently, it might be just what you need. Come back and ask as often as you like.

Don't get too down over having PMR there are far worse things you can have.

[Hidden]

I am one who had very bad reactions to methotrexate. The short version is it gave me the sensation of being hypoglycemic and I ate to feel better I gained 80 lbs in 6 months and I felt like I was dying so I just didn’t care.

I took it for 6 months and within a month off of it I felt well ..

I have lost 20 of those pounds and will try again...

Good Luck. Oh I shared this so if it happens to you you will know what it is a lot earlier than I did..

[Kingfan in reply to Hidden]

Thank you, i think I'm getting a well rounded response of varied opinions and reactions. Food for thought

[katiemills]

Hi Kingfan , you might be interested in my story . I started on 30 mg pred in October 2018 and struggled to taper after 19 mg. my rheumy tried to get me to take methotrexate and I finally agreed when I was struggling at 15 mg pred in July 2019 . I then started on 10 methotrexate once a week and 5 mg folic acid the day after .

I was fine until my rheumy increased the methotrexate to 15 mg and I felt absolutely awful for three days after each dose . After 4 weeks I rang the rheumy department and told them I felt so ill and could I stop taking the methotrexate or at least cut back to 10 mg and they told me to increase the folic acid to 6 days a week because that would help with all my discomfort. It has worked wonders and I no longer feel dreadful after taking the methotrexate and I’ve managed to taper down to 9.5 mg pred and am about to drop again .

I don’t understand why they don’t give everyone 5 mg folic acid x6 weekly straight away instead of waiting until people feel so ghastly !

I hope my story helps you make a decision . My rheumy is of the opinion the both prednisone and methotrexate are horrible drugs but that prednisone is the worse of the two 🤷‍♀️🤷‍♀️. Rocks and hard places spring to mind .....

[Marijo1951]

I have both GCA and PMR. I started on 60 mg pred per day on 31st July 2017. By the end of that year I was having trouble to reduce to 25 mg and had two GCA flares, the second one at Christmas. That time I started on 10 mg per week of Methotrexate, increased to 15 mg a couple of months later. At that time my folic acid was also increased from once to five times per week, which stopped the diarrhoea which was the most obvious side effect I had experienced. I've stayed on that dosage since, nearly two years now, and haven't had any other notable side effects, except that if I take it in the morning it knocks me out for the day. I set my alarm for 10 p.m. every Friday to remind me to take it before I go to bed and I'm only at my normal level of deathly fatigue the next morning. I'm now down successfully to 6.5 mg pred per day with no problems. As far as I can tell, the MTX has helped me along the way to taper my dosage without difficulty, but the fact that my rheumy is happy for me to reduce fairly slowly at my own pace no doubt helps a lot too.

[Aif111]

Hi! I have the opposite. I have no problems with Methotrexate besides catching a cold more easily and a bit of nausea. Pred gave me the terrible weakness and twitching muscles. Been 3,5 months off pred and my legs are still weak.

[Choco-Holic]

Hi Kingfan. I’ve been on methotrexate since March as similar to another reply my rheumatologist said it was the lesser evil of the two drugs and would help me taper. I take folic 6 days per week and take methotrexate just before bedtime so if I were to have any side effects I would ‘sleep’ through them. Apart from feeling ‘tired’ the next day in the first couple of months I’ve been absolutely fine 🤞 I was on 15 mg methotrexate but just had it upped to 17.5. I’m down to 6mg prednisolone. My highest dose of prednisolone was 50mg, I have PMR and GCA. I like you was ‘scared’ as had only listened to mostly the horror stories. Everyone’s tolerance to meds is different and I understand that, but for me, so far it appears to be working and can only speak from my own experience. Good luck in whatever you decide xx

[nuigini]

No experience with methotrexate Kingfan, it's been offered many times by nearly every doctor I've seen, but I refused to take it after doing research on the side effects relative to the potential benefits.

I've had PMR for almost 6 years and struggle to get below 10 mg. I started at 40 mg. It took me a long time to accept the longevity of this disease, but I lead a wonderful life at almost 71 years of age. Too many of my friends are no longer here to say that. It's definitely frustrating at times and I too have my low moods, but acceptance has helped a lot.

[animalactivist]

It was not for me because of my other health conditions, but im sure it will be fine for you.

[Suet3942]

I’ve been on it for 2.5 years. No probs at all but you must have regular blood tests. And folic acid 6 days a week.

[casca312]

So interested as feeling very glum as was diagnosed yesterday with a relapse of GCA. I am now back to 45 grams of Pred plus methotrexate, about which I am very scared. I have my first injection, and learn how to inject myself, on Christmas Eve!

Will keep you updated

[Rene20]

I am no longer taking oral pred had reduced to 1mg it wasn't working!

Rheumatologist gave me 2 steriod injections. First one lasted 5weeks was very stiff again in neck legs thighs.Had second steriod injection. 14th November Rheumatologist wanted me to start on Methatrxate 15mg on Monday18th November Folic acid 5mg on Friday 15th.

Fingers crossed no side effects as yet.

However not sure if it is helping because gp gave me a steriod injection for a painful shoulder on 9th December. So feeling pretty good at present.

This Monday 23rd December will be week 6.

Had fortnightly blood tests for first 6 weeks.

Then blood test monthly due to see Rheumatologist 10th February 2020.

I really did not want to start Methatrxate. But had been on prednisolone since diagnosis of PMR some 9YRS ago.

However I was bobbing along quite well on 5mg pred daily for many years.

Would appreciate any helpful comments on this present situation.

[PMRpro Ambassador in reply to Rene20]

PMR is only managed by enough pred - and approximately 40% of patients with a PMR diagnosis require a low dose of pred at 10 years

medpagetoday.org/rheumatolo...

If the doctor forces you to go to too low a dose - it won't work. Nothing to do with the pred itself, it is to do with the dose.

I've been on pred for over 10 years but for various reasons I struggle to get below 10mg. But I won't take methotrexate - I did try, it was awful. I felt worse than without pred originally.