benefits of Methotrexate

My Rheumatologist recommended that I take methotrexate....firstly she said it will help me reduce the prednisone without pains. 

I have not taken it yet as I'm not at all happy with taking two rather drastic medications at once. 

 Also it takes about three months for methotrexate to kick in. 

Eileen has had a negative reaction to methotrexate and I really trust her judgement..

Which is the worse of the two evils, well after reading, I think methotrexate takes first prize. 

I don't know why doctors give patients the impression that methotrexate will get them off pred. There is no guarantee of that at all - it doesn't often replace pred althought it MAY allow you to manage on a lower dose of pred. Any doctor who is suggesting you take it when on 5mg is crackers IMHO - this is already a low physiological dose which is doing no harm at all. This is relatively new work about duration of PMR (median 5.9 years, not two) and the lack of the so-called pred effects - an age-matched population not on pred had them too!

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

As much a limiting factor as anything now is your adrenal function which will have to return too. I also found a 2001 article about using long term low dose pred to manage RA - low dose, below 10mg, is afe and well tolerated. The concept is the same even if the disease isn't.

The study that many doctors take as "mtx works" done by an Italian group did a 5-year follow-up and found that while patients  had been able to take slightly less pred over a year, at 5 years their long term "pred side effects" were no different. So why bother????

You may only take mtx once a week - but believe me, the side effects can last all week! I took it this summer for 4 weeks - I was going to stop for a couple of weeks after that anyway to travel but I refused to start it again. I took it Sat night and Sun morning just in case I felt bad for the first couple of days as many people report. The first week wasn't too bad - no nausea so I thought, oh that's a good start then. But about mid-week I had a headache which lasted until Fri evening (I never have headaches). The one thing I noticed the first week was it felt as if the so-called pred side effects were increased: sweats were back, I was hungry all the time (again, never usually). And I felt as if I had diarrhoea, not bad but I was very unhappy being far from a toilet, and slight indigestion - I never have that! The second week those things were worse and I itched slightly all over, My hair was falling out in small tufts. I started to feel more tired than usual. I take an anticoagulant - I started to bruise more. I'm sure there were other things but they escape me just now! Over the following 2 weeks all this increased and the fatigue became overwhelming. After I stopped mtx it took about a week for that to improve - but I was able to travel to Seoul which I couldn't have the previous week. It is now about 6 weeks since I stopped taking it - my hair is not falling out as much - normal single hairs now, not in tufts of 10 hairs as it was. 

I have a PMR friend, involved in the charity, who was on mtx for a few years. She had no adverse effects at all but only managed to reduce her dose by a couple of mg to about 7mg I think. Last year she and her rheumy decided to try leflunomide - and in 8 months she did get off pred, she says she "felt it kick in". I have wondered a few times if she really had "PMR".  I think most doctors would say the leflunomide side effects are worse than mtx and my rheumy certainly didn't suggest it, as I'd had diarrhoea with mtx I think he thought leflunomide would be worse, it had been mentioned previously. 

I haven't time to say more just now - I will if you want me to.

I too have tried a few things over the years to try to lower or get off pred for my PMR….

Including...….

MTX  With Folic Acid....

Plaquenel…….

Salazopyrin……

But for me , they all made me as sick as a dog, with diffrent other side effects...….

Yet my brother in law just loves his MTX...… so there you go...………

The thing is, some of these meds may help you lower your pred, and you really dont know

how it will effect you till you try using it...…….it may suit you where it did not like me one little bit.

For me , it is pred ONLY.... 

 I am an opinion of one, so take what I have to say in that context. I would advise you to trust your instincts. I’ve been on this form for years now and they’re been numerous conversations about methotrexate. Often prescribed is antidote to prednisone and never works. Oh, I suppose a person here in there will say did help them, but it’s no panacea. It did nothing for me, and when doctor kept telling me he had to be checking my liver on a regular basis I shut it down cold turkey. At the end of the day there’s no free lunch.

The current guideline by the NIH for GCA mentions that if there are several flare-ups when on pred only, someone has a 40% chance of beneficial effect of MTX. If MTX does not work one can try Actemra.

After my 3rd flare-up in May my rheumy and I decided to try MTX, because I had been taking over 19,000mg of cumulative pred by then. My rheumy expected that I would soon find out if there were negative side effects and also if I found benefits. I had low expectations, but to my surprise I was able to notice no side effects and after about a week I did start feeling better. Less fatigue, no pain in my hands, no headache, but most remarkably, very stable morning temperature. I have been recording my temp reading every morning at 6 AM, when I take my pred. If I'm doing well the temp is 36.6C. Before MTX, it would fluctuate between 36.6 and 37.2. The days with the slightly higher temp would coincide with more fatigue, sweat, pain in hands etc. Since my start on MTX in June I have had only one day with 36.7C, a couple of days with 36.5 and 36.4, for the rest every morning is a boring 36.6C. And I have not felt so good in the past two years. I have gone from 50mg pred in May to 20mg now. 

I realize that this does not prove anything, since the last two flares happened around 15mg pred. I still have to see what will happen when I get to those values again, but I feel a lot more robust. I hope that with MTX I will be able to get well below 10mg and then go very slow until cured of this nasty disease.

Also, maybe I would have felt better without the MTX as well. You never know for sure. 

But even without hard proof I think that the NIH guideline might be right and that indeed for 40% there are real benefits in this very low cost medication.

The only drawback of the MTX has been that I had to completely stop alcohol consumption. And I like my glass of wine with dinner and a beer when thirsty. To my surprise, I did find excellent non-alcoholic beer.