Methotrexate

[Scotty7]

My consultant wants me to try this to help with PMR. Has anyone out there taken this,what do you think. My sister in law is taking it for a different illness and she is losing her hair ( it could be due to other things going on in her luge though) does it help with the pain while tapering ?.

[PMRpro Ambassador]

I agreed to try it about 18 months ago - I have had PMR for 15 years and been on pred for IRO of 10 years by then. I didn't have a good experience - bear in mind I have never had problems with taking prednisolone or prednisone , no sign of diabetes, weight gain had been due to PMR and inactivity rather than the pred except when I was on methylprednisolone, bone density was barely changed, and none of the more minor things.

Within a few days I had muscle and joint pain and my hair started to fall out in clumps despite increasing the folic acid. I developed a ravenous hunger - never a problem with pred - and gained 2lbs in under a month which I later have struggled to lose. During the second week the fatigue started and got steadily worse until at the end of the 4th week I could barely put one foot in front of the other when walking into and back from the centre of the village, just a few hundred yards. The fatigue worsened the day after the dose and lasted until the day before the next dose so I had one reasonable day per week at that stage. I didn't have any nausea or stomach upset but did have a headache and dizziness and developed brain fog which has never been a problem with pred. It was as if the mtx made what are usually called steroid side effects worse.

Soon after we were going to Seoul to a science meeting and I had already discussed stopping the mtx for while we were away and I did so as I couldn't see how I would manage the trip feeling as I was. The improvement in fatigue was almost immediate although it took a few weeks to go altogether. It took rather longer for the hair loss to stop and I don't think my hair has really recovered since, it has changed in texture. I discussed it with the rheumy - and he agreed it wasn't realistic to keep on with the mtx. I did appear to have another need for the pred at the time which the mtx wasn't going to address anyway so I had not tried any reduction in dose.

I know that many people do take mtx without problems but something that concerns me is mentioned in the Abstract for this paper

ncbi.nlm.nih.gov/pubmed/253...

where they say ",,, toxicity is still a concern, with a significant proportion of patients interrupting long-term treatment due to the occurrence of MTX-related adverse drug reactions (ADRs), which are the main cause of drug withdrawal."

Yes, mtx IS the first line approach for RA and it has been used for well over 30 years, there is not a lot to be learned about it you would think. But is the same not true for pred - of which they are so afraid? And how often is the toxicity of mtx addressed when they are pushing it on us?

[Scotty7 in reply to PMRpro]

So sorry for you all those side effects. I dont think i will take metho,im going to try and cope with pred and pain killers. I have been on Alendronic acid and extra calcium since being diagnosed i am already type 2 diabetic

[SnazzyD]

Hello. Is it right you were diagnosed only in Dec 19? If so why are they calling it a day and adding in Methotrexate at this very early stage as if you’ve tried to taper for a long time?

[piglette in reply to SnazzyD]

A lot of doctor's start with methotrexate immediately you start pred. There was a thought it was more effective if you did. They often add in Alendronic Acid at the start too. I think I may have read it somewhere in some guidelines, although I may be imagining it.

[Scotty7 in reply to SnazzyD]

Diagnosed dec18 11 months ago

[Scotty7 in reply to SnazzyD]

Yes diagnosed just over a year ago, consultant did not say why he would try me on meth, i do have type 2 meth,weight gain. I gave read up on meth and peoples comments on this site and other site, i will be telling him NO thanks. I have managed to taper to 5.5 this week, fingers crossed it get this under control myself

[SnazzyD in reply to Scotty7]

Did you modify your diet for Pred?

[Scotty7 in reply to SnazzyD]

No i am constantly on low carb high protein diet

[SnazzyD in reply to Scotty7]

It’s a pain isn’t it? How low carb?

[Scotty7 in reply to SnazzyD]

Yes it is a pain, low carb is hard at times, i do like my bread ,biscuits ,pasta & spuds just have to have a lot less

[SnazzyD in reply to Scotty7]

I found I could have absolutely no bread, pasta, rice, potato, etc. or the weight would go on. My treats were two small glasses of wine a week, two small squares of 85% chocolate and a single chip from another’s plate. My standard pud was berries and sugar free coconut (can’t do dairy) yoghurt. 3 years down the line I can’t face berries and yoghurt now!

[PMRpro Ambassador in reply to SnazzyD]

I'm much the same if I want to lose weight. But I don't do regular desserts - never felt a need and much prefer savoury. Except for the sort of dessert only the local hotel chef or the ice-cream shop in town can make!

[Green_girl]

I took it only after it was discovered that the Pred was making my osteoporosis much worse, so I had to significantly reduce Pred as quickly as possible. This was after about 18 months on Pred.

I found the folic acid given by the NHS to be useless in counteracting the side effects, so used Metafolin instead, which stopped most of the side effects. I did get off Steroid quite quickly. I found it did nothing for any discomfort, but did seem to enable me to move my muscles better, if I could work through the discomfort (by then I was not in the really bad pain of the first year).

Can't say I had hair loss - Pred had already thinned my hair a bit, and the Meths didn't seem to change anything.

It's a 'thug drug' just like Pred - they all have possible side effects which are alarming and ever person is affected by them differently. I did step down off the Meths of my own volition when I felt the condition had really gone - a good job too, as the GP said my blood test results showed that my liver was beginning to be affected and I would have had to come off anyway!

All you can do is to discuss thoroughly with your medic, and come to your own decision......hope it works well for you.