Starting Methotrexate

[JsyAnne]

Hi

My history is -I was diagnosed with PMR in June. Started on high dose of Prednisolone and then gradually down to 15mg which made symptoms bearable. Reduced to 10mg but obviously too big a jump so back to 15. Few weeks later tried reducing to 12.5 but not good so back on 15mgs. Unfortunately now 15mgs not as affective. In the meantime GP referred me to Rheumatologist. I saw him yesterday and he has given me Methotrexate. He said it might take a couple of weeks to kick in and I should carry on with steroids for the time being and then think about reducing them grafually. Was just wanting feedback from people of their experiences of switching from one to the other. The doctors are so vague!

Also since the last time I started adjusting the dosage I have found I get very breathless on exertion which I mentioned to GP and Rheumatologist. They don't seem very interested in that and just say it's probably the weight I've put on but it started quite suddenly and I worry about my heart! Any theories welcomed so I can discuss it on next GP visit.

Thanks

Anne

[PMRpro Ambassador]

Methotrexate rarely replaces pred although it MAY allow you to get to a lower dose of pred. However, I think most people who have used it would agree it takes a lot longer than a couple of weeks to work.

It is not uncommon to find that if you start to yoyo the dose of pred and allow the symptoms to flare that it is harder to get them under control again. You say you were started on high dose pred in the summer - was there any possibility it was GCA rather than just PMR? More than 25mg of pred is rarely needed for PMR and 20mg is usually plenty.

Corticosteroids can cause breathlessness so it may be that. Or PMR that is flaring can also make you more likely to get out of breath - it does me.

[JsyAnne in reply to PMRpro]

Thanks

[Hidden]

Hi Anne

Have a look at my Profile, you sound just like me!

The Methotrexate won’t replace the Prednisolone, it will be taken in conjunction.

It will take up to 12weeks for the Methotrexate (MTX) to kick in fully but you will feel the benefit before that.

Going back to when l first started with PMR my sticking point was always 11mg but of course l now know that l’d reached my optimum level for that point on my journey.

It was a few years later l started MTX & went from 18mg to 7.5mg before stopping for Surgery.

Recently, l have been off it for a year due to Liver Issues but am back on it again & just waiting for it’s effects to fully kick in.

I had the issues with breathlessness & was fully tested for heart/lung issues but nothing significant found. I am currently experiencing the same issues which l shall mention to my GP next week but it will be the effects of the additional Pred l’m sure!

Any questions there are a few of us taking Methotrexate successfully, it does not suit everyone but if it does it can be very helpful in reducing the Pred.

Good Luck 🍀

Best Wishes

MrsN

[JsyAnne in reply to Hidden]

Thanks. Much more info than I had from Rheumatologist. I actually felt like he wasn't really very interested in me at all

[Hidden in reply to JsyAnne]

If l or one of the other ladies who take MTX can help don’t hesitate to ask x

[Swiftandbold1 in reply to Hidden]

Interesting to see the conversation about MTX as it's likely to be an add-in for me soon. Will shout if I need any input too.

[Hidden in reply to Swiftandbold1]

I’ve posted some tips for New Users have a look at my Profile & written other posts on the Subject.

Good Luck & let us know when you’re due to start.

MrsN

[piglette in reply to JsyAnne]

My initial rheumie used to spend his time talking about his holidays and how wonderful his son was. I don’t think he was the slightest interested in me. He gave me steroids and then wanted me to reduce them as fast as possible.

[tangocharlie]

I got breathless on the slightest exertion like going up a slight hill when I started a trial of MTX and when I mentioned it was taken off it. My current rheumy wants to try again and says he has never heard of that reaction.

[BoaterAnnie]

I was on MTX for 7 weeks before I noticed any difference at all.