Methotextrate

Thanks so much Mrs K - I'm sure a lot of people on Methotrexate will feel reassured by reading of Margaret's experience. It certainly seems from more recent posts that MTX is becoming more widely prescribed for PMR/GCA. I have mixed feelings having read the article: on the one hand it's reassuring that there appear to be less side effects whilst taking MTX as opposed to steroids whilst on the other if they have to carry out continuous blood tests there appears to be a possible risk to the organs, unless I've misunderstood this. However, thanks goodness for an alternative for those people for whom Prednisolone doesn't appear to work.

MrsO

I was put on Methotrexate about 2 months ago and it was one of the worst experiences I have ever had!

I was diagnosed with PMR last December and started on Prednisolone. I had terrible side effects so was changed to Deflazacort - also a steroid but much more expensive! I have had absolutely no side effects at all on them but in all this time my ESR has not gone down and fluctuates between 70 and 84. I was convinced that my diagnosis must be wrong but I had a second opinion from a General Medical Consultant and he agrees 100% with my Rheumatologist. I have had various tests including CT scans to see if the inflammation was caused by something else but nothing has come to light.

My Rheumatologist decided that I should wean off the steroids (I have been on 18mg a day all the time which is equivalent to 15mg a day of Prednisolone), and I should try Methatrexate in a bid to get the ESR down. I was taking 15mg once a week followed by Folic Acid the next day. For the first 3 weeks everything was fine then I woke up one morning and I could hardly speak or move my neck. My glands were like golfballs and my mouth and tongue were pure white with oral thrush. The pain in my shoulders and arms was excrutiating. I also thought my kidneys were beginning to fail as I was only going to the little girls room twice a day! I was told to stop the Methatrexate immediately and to start the Deflazacort again which I did. Within 2 days all the pain was gone and within a week my glands, mouth and kidneys returned to normal.

I should also point out that in addition to the PMR I was diagnosed with Fibromyalgia too in April of this year. I take Tramadol, Amitryptiline and Gabapentin (my wonder drug!) for the Fibro.

Anyway, I received a letter from my Rheumatologist just over a week ago asking me to try another drug called Leflunomide. I was a bit concerned, and to be honest scared, to try yet another drug but I agreed to give it a try on the basis that I would stop it at the first sign of any side effects. I take one pill a day and it's just over a week now without any side effects! Hopefully this will reduce my ESR but I have to say that for the last week or so I feel better than I've felt for over a year. I even managed to go back to work for 2 full days last week after several failed attempts so I hope I can keep that up too.

I know everyone is different and that I seem to get most side effects so perhaps I am in the minority.

Hi Klosblue!

What an interesting experience! (she says, tongue firmly in cheek!) Certainly one I'd not like to share!

How were the PMR symptoms while you were taking the steroids? You've posted before, haven't you? Have you read any of our discussions over the past few months? I only ask because of our comments we've made that it shouldn't be the ESR that is taken as the guide but the symptoms - after all, if your ESR can be bog-standard normal or even low (like me) when you can't move but the symptoms are controlled with steroids the opposite should also be true - so why do they take the ESR as such gospel? The ESR is only an indication something isn't right - it's so non-specific it's not true and when I hear people saying \"but it was confirmed with the ESR\" I just go \"right...\" :roll: You have other things going on, too, so why should your ESR react the same way as someone with \"just\" PMR.

cheers,

EileenH

I promised in the original post that when I had the answer to a specific question I would post that answer on our website and also on here.

Its a bit long, but I am sure that PEP (Patient Experience People) won't mind.

We asked the following question of our Lead Medical Advisor

[color=darkblue:f17eec40f4]Why is Prednisolone the drug of first choice and not Methotrexate as Methotrexate is said to be a ‘steroid-sparing agent’?[/color:f17eec40f4]

The answer:

[color=red:f17eec40f4]“Unfortunately the clinical trials have not shown an outright benefit for methotrexate in PMR. That is why its is reserved for people with PMR not responding well to steroids or people who have peripheral joint arthritis as well - where the suspicion is that they are evolving into rheumatoid arthritis rather than PMR.

I use quite a lot of methotrexate in PMR - especially if they do not have a complete and sustained response to steroids only. However methotrexate is effective in only individual cases, we need to be selective in its use in PMR.”

[/color:f17eec40f4]

Note 1.

Important information on Methotrexate can be found on Patient UK.

You can download the leaflet from this site, and there is a print options box on the first page.

Patients Experience did give us permission to reproduce the leaflet but leaflets can be amended or updated and as we always endeavour to keep up with the latest medical development and aim for accuracy we decided that the link was more appropriate.

Click on the link below:

https://patient.info/medicine/Methotrexate.htm

Note 2

It is even more imperative that if you are prescribed Methotrexate that you check every other medicine you might be prescribed either now or in the future to ensure it is compatible with Methotrexate. I do not mean check with your GP; I mean check with your Chemist (Pharmacist). They know more about drugs and inter-action than any other part of the medical profession. Any Chemist worth their salt will happily check and discuss drug interaction and compatibility with you and that includes any over the counter or homeopathic remedy you might want to take.

Methotrexate takes some time before it starts to have an effect and allows you to reduce the steroids - and in PMR that's all it does, it allows a reduction of steroids, it of itself doesn't change the course of the disease as it does in RA and other illnesses.

Finally, there is still no known cause, cure or friendlier medication. We live in hope.

Hi all,

I just wanted to add in another branch of information about methotrexate. As we've all pointed out it isn't a cure for PMR but it is used widely in rheumatoid arthritis where it is used as one of a group of something called \"disease modifying anti-rheumatic drugs\" or DMARDs for short. This means it actually has an effect on what the disease does in the joints during RA and works best used early before damage has been caused. This does not apply in PMR as it doesn't have a physical damaging effect on the joints in the same way.

However, there is a blog called rawarrior (google's a wonderful thing) written by a young woman with RA and, amongst a lot of excellent and well-founded info about RA,she has a section all about MTX. She has directed her blog at RA suffers as she has it but the info about MTX is also valid for anyone with PMR who is intersted about the drug. I would recommend a read of it if you are one of those considering MTX.

There are is lot of common ground between RA and PMR and you may well find other info about dealing with symptoms/day-to-day problems on her site. To be honest - she makes me feel better. RA has a far nastier longterm prognosis despite the similarities in signs and symptoms and limitations - so I'll take PMR over RA any day. And we have mostly had a lot longer before the pain started - RA is common between 30 and 50. Imagine having to deal with small kids every day and all day. At least most of us are grandmas and looking forward to retirement in the relatively near future if we aren't already there! :wink:

EileenH