Chemo drug used for PMR

[ayoung]

I have taken 4 pills of this drug for 2 weeks now and have had no side effects but also no,improvement in getting out of my chair! Does anyone take this drug, starting with M.

[SheffieldJane]

Do you mean Methotrexate that is prescribed as a steroid sparer to help people to reduce Pred? A number have people have been prescribed it with mixed results. More information about you and your journey with PMR/GCA might help people to comment.

[ayoung in reply to SheffieldJane]

Yes, that is the drug I meant. Thank you for the reply

Methotrexate is the one. Hope I get some replies,

[Hidden]

Hi

Is that 4x2.5mg=10mg per week? It’s usual to start you on a lower dose & then increase if no noticeable side effects. It takes three months for MXT to start to really have an effect, so at this point l wouldn’t expect you to feel any benefit.

I took it as a Steroid Sparer & it enabled me to reduce my Pred from 18mg to 7.5mg when it had to be stopped for Surgery followed by Chemotherapy. I started back on Methotrexate again a little after year off it & currently it’s been stopped due to high ALT levels in my blood.

Methotrexate is a DMARD & is not classed as ‘Chemotherapy’ at the dose prescribed.

If you look under my profile you can read my Posts on Methotrexate, if you can’t find them, let me know & l can repost them for you.

Best Wishes

MrsN

PS what dose of Pred are you on at the moment?

[Daisychain12 in reply to Hidden]

Angela darling this is so helpful thank you!!! Xxxxx

[Marijo1951]

I've been taking methotrexate since just after Christmas. I was prescribed it because I couldn't go lower than 25 mg of pred per day without flaring. I started on 10 mg per week, and this was increased to 15 mg after about 8 weeks. I'm pretty sure that it has been beneficial as I haven't had any difficulties in reducing pred since then. I've just started on 12.5 mg pred and am supposed to go to 10 mg after 4 weeks.

[suzy1959]

I was put on Methotrexate a while ago and then a few months in had a flare as soon as I tried to reduce so the conclusion was that it wasn't helping at all. On a positive note, a lot of my hair fell out and I went from having thin fine straight hair to curly hair which I still have about 3 years later, albeit not as curly as it was at first. I prefer the curly hair!!

[GerriMc]

I’m one of the ones who has benefited from Methotrexate. I was on 20mg Pred and reducing but couldn’t get below 17.5. I took 4 tabs per week for a month and then moved to six. I felt an improvement almost immediately and managed to get to 3.5mg Pred a few weeks ago. Had a couple of flares along the way and recently had to go back up to 5. Although these coincided with other problems like chest infections etc.

You’ll need to be monitored with blood tests every couple of months to make sure there are no adverse effects.

I found if you take it at night you’re less likely to feel the tiredness that it can cause on the day following your dose. My hair thinned slightly but that seemed to settle after a couple of months.

Best of luck.

Gerri.

[Marijo1951 in reply to GerriMc]

I second the advice to take methotrexate at night. I set my alarm for 10pm every Friday to remind me. When I took it in the morning I spent the rest of the day on the sofa.

[Daisychain12 in reply to GerriMc]

Great news Gerri so happy for you. Any negatives from it? Xxx

[GerriMc in reply to Daisychain12]

Not really. Some hair loss, really just noticed there was more in the hair brush than usual but my hair didn’t get noticeable any thinner. Even that settled down after a few weeks.

X

[Hidden]

I was on Methotrexate unfortunately i was extremely unwell with it.Terrible sickness upset stomach with pain.Took long time to recover.They tried another drug(cant remember name right now)

Same again was so unwell i certainly will not be trying any more of these drugs.Forgot to say i started off on tablet Methotrexate,then was injecting it myself.I am happy you have had no side effects and hope it will help.x

[Daisychain12 in reply to Hidden]

Aw sorry to hear that darling xxx

[Rene20]

Hi,

I came of prednisolone August was only taking 1mg daily but this was not doing the job.

Rheumatologist gave me steriod injection in bottom worked well but after 5/6 weeks stiffness returned.had second injection 12th November and commenced on Methatrxate 15mg each Monday.

Had the beginning of frozen shoulder saw gp 9th Dec he reluctantly gave me a injection into shoulder a week later commenced physio this gs improving.

At present feeling really well but full of steriods so difficult to say if Methatrxate is helping now 2 months and regular blood tests.Haven't really noticed any unpleasant side effects very occasionally wave of nausea fleeting 1minute or so.

Watch this space!

[PMRpro Ambassador in reply to Rene20]

I can't see the logic of stopping 1mg pred because it isn't doing the job. You probably needed MORE pred - as has been shown by the pattern of using injections to manage PMR symptoms.

[tangocharlie in reply to PMRpro]

That's what I was thinking. Depo medrone steroid injections work well for me and rheumy has just agreed to a regime of having them every month to be reviewed after 3 months. I tried MTX a few years ago but side effects of breathlessness meant I had to abandon it. EDIT - I really don't get why rheumies put us on MTX for PMR as it does nothing according to studies. It gets us off steroids but if the PMR is still raging and we're not on steroids it'll just come back. I asked my rheumie that and was told it was to help get me off steroids, which didn't answer my question. PMRPro can you enlighten me?

[Rene20]

Yes I was jogging along on 4/5mg pred. However I had been on prednisolone for 9 years.

Rheumatologist said it was too long, wanted to try immunology treatment hence Methatrxate.

Steriod injections were given ostensibly to assist with oral withdrawal of prednisolone.

If the immune suppressant doesn't help I need to discuss further treatment of prednisolone with consultant.