Is there a way to search for discussions? Looking for info on Methotrexate.

If you go to this page

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

you can scroll down through all past posts - takes ages but you see them all.

The search function on the forum itself is useless - type methotrexate in and you will get a few thousand posts listed because it catches every post that mentions it! You are more likely to get info by typing a more specific question into google and including patient.info and methotrexate in the question!

Or you can do it the way everyone else does - and ask the question as a post.

There are no guarantees with mtx, it may help you reduce with fewer flares (going slowly does the same) or it may not, it may get you to a lower dose, it may not. In my book it may be worth trying - provided you don't develop adverse effects. That's your decision whether you can live with it long enough to see if it does help, it is said it takes a year to make a difference to the cumulative dose.

I gave in and humoured my rheumy last summer and took mtx for a month. Within days my hair started falling out in chunks despite the folic acid. I ached - as if I was having a flare, one of the side effects of mtx can be muscle and joint pain. I started to experience things I'm told are pred side effects that I had never had before on prednisone although I did have them on methyl prednisolone. I had no nausea - but I did develop an appetite that is unlike me and I was hungry all the time. I gained just over a kilo in a month and I haven't lost it after well over 6 months. As the month went on I noticed fatigue developing, it hasn't been a problem for a long time, and it got worse until the end of the month trial I had agreed - I was going to S Korea to a meeting and I didn't want to take it while travelling. I stopped just over a week before we went - if I hadn't, I'd never have managed the journey. The fatigue was improving by the time we went but it was longer before the hair loss stopped. I have not started taking it again.

Google "Prescribing for Polymyalgia Rheumatica" to get a current (Feb 2018) literature review in full text from Australian Prescriber. The take home is that the usefulness of prednisone-sparing protocols such as MTX is unproven, especially when pred use is in the low range of taper. Eileen will have more info. And there is lots more cited info on this site. For me, no one has yet explained what the benefit might be to adding a chemotherapy drug that requires monthly liver scans due to its systemic toxicity, in order to reduce the amount of prednisone I take. I'm on 6.5 mg and tapering on the DSNS method. I wld pay good money for even anecdotal evidence but none is forthcoming. Until the evidence is there and as long as I'm at <7 mg and tapering, I truly dont see a valid reason to add MTX.

Thanks everyone. I have pretty much decided against using it. The doctor gave me the option but I'm going to say no. I emailed her this morning and told her what I think we need to do is start over with 15mg of prednisone and decrease way more slowly this time. They kept going down by 5mg and we know that's way too much! Then I'd complain and they'd say take another 5mg in the afternoon. I mean it has been a mess. The last few weeks have been terrible and this morning was so bad I stayed home from work. The last few weeks have been only 5mg a day, and 25mg of amitriptyline in the evenings. I pretty much knew it wouldn't work but tried it because I was determined to try to get off these wretched steroids. I've gained almost 20 lbs since last summer, and all of my life I've been able to eat anything and not gain. I don't care about the weight anymore, at least not right now... I just want to feel halfway normal. If the doctor doesn't agree to my "starting over" plan, I will be shopping for a new doctor. I should hear from her late this afternoon or Monday morning. 😕 Thanks again.

So the doctor said to go back to 15mg a day for a week, and then alternate 15mg with 10mg. Welllll I am going back to 15mg but I'm going to do it for at least 3 weeks... then I think I'll alternate it with 12.5. I just have to make sure I have enough refills. I took the 15mg this morning, although later than I usually do, which is 4am. But I swear my legs are feeling better already.

Thanks so much for your help. I appreciate it!