Methotrexate

[Phed]

I developed GCA in August 2019 and was dismissed by my local NHS in April in 2020 and placed in the care of my local doctor, February this year I developed PMR and was diagnosed over the phone. I decided to go to Benenden Hospital which I belong to and had a really first class appointment with a new rheumatologist yesterday, he was so thorough the appointment lasted well over an hour with full blood count and X-rays with a follow up call in 2 weeks, he mentioned had I thought of taking Methotrexate as it would better than staying on steroids for too long, I was wondering what people’s views are on Methotrexate versus Steroids.

[SnazzyD]

Hello there, until you get better replies, my answer from someone looking in at others’ experiences, it depends on whether it works for you (not assured) and the side effects aren’t a deal breaker. Some tolerate it well, others don’t; Metho doesn’t come without it’s own issues. You need regular blood tests to check your kidney, bone marrow and liver function. At best it reduces the amount of steroid you need, it doesn’t negate it. This can be a total game changer for some but for others it is another drug that they have to grapple with for no real benefit. Nobody can say if it is right for you as an individual; try it and see. Good luck and sit tight for more replies.

[Phed in reply to SnazzyD]

Thank you for your reply. I guess if I don’t try I won’t know what effect it will have on me, I guess I can always come off it doesn’t agree with me, the pain would be the regular blood tests, but the if it’s for my own good I will have to do it.

[SnazzyD in reply to Phed]

The blood tests should be 1-2 weeks until everything is stable and then 2-3 monthly and keeping to this is essential. bnf.nice.org.uk/drug/methot...

It doesn’t need weening off like Pred does. You do have to be extra careful with the immunosuppressant effects. The link above should tell you what the docs have to know.

[PMRpro Ambassador]

There is no evidence that methotrexate will replace pred altogether - it MIGHT in a small number of patients who possibly have one particular type of PMR or who have an inflammatory arthritis that has been misdiagnosed as PMR. But for many it only lets them get to a few mg less and it is questionable whether it reduces the adverse effects that are blamed on pred - but they are found in patients NOT on pred and also some as a result of PMR.

If you go to the FAQs there should be a collection of links to posts about MTX and there are lots of posts on the forum.

I did try it because I cannot get to 10mg never mind lower but I have few adverse effects due to pred and I felt worse on MTX than I did with PMR that wasn't being managed with pred which really isn't the idea. But above all the fatigue the MTX caused for me was the deal-breaker, I just could not function and as a sole carer that just wasn't an option so I stopped after a month.

It is something that you have to try - but personally I think it is worth seeing how you get on without it. Loads of people get down to low doses without it.

[Phed in reply to PMRpro]

Thank you for your reply, I think I might carry on without MTX for now and see how I get on by reducing gradually I’m on 8mg now so I guess not to higher a dose.

[PMRpro Ambassador in reply to Phed]

8mg is what is called a physiological dose - similar to the amount of natural corticosteroid your body produces and most really good experienced rheumies stop worrying once you get to that sort of level.

[Phed in reply to PMRpro]

☹️just had a telephone consultation with the rheumatologist today and now have to increase my steroids to 10mg a day, I knew I probably would have to but kept putting it off and suffering with PMR pain but as my markers are up on the blood results I feel I have no option now, I have reluctantly decided to try Methotrexate, but feel torn between the devil and the deep blue sea as I have a son who was on it for a few months and as his iron levels are now low (they are improving he is off Methotrexate now and taking iron tablets) and him and his partner blame it on that, also her grandma was on it she was about 87 and nearly died from being so weak, needless to say they don’t want me to take it, if I do take it (apparently it’s only once a week) with regular blood tests do you end up coming of steroids for good and taking Methotrexate instead? I have been on Steroids for over 2 year’s now which doesn’t seem that long or is Methotrexate something that I will be on till I’m pain free🤞part of me is thinking if I don’t try I won’t know if it’s right for me but the other part is thinking family are so against it, what is the worst that can happen by trying it? and how long roughly before any side affects kick in, I know hair loss can be one of the side effects but not sure what else any advice would be grateful received thank you.

[PMRpro Ambassador in reply to Phed]

" do you end up coming of steroids for good and taking Methotrexate instead"

Not necessarily, it might get you to a lower dose of pred but not necessarily and few people get off pred altogether - usually it is likely to be because they don't have PMR at all but an inflammatory arthritis.

Look at the FAQs, there are a lot of references there.

I took it briefly but wasn't prepared to feel worse taking it than I had with untreated PMR! It does help some people, you only find out if you are one by trying. And as far as my rheumy is concerned, I did and it didn't suit me. I've been on pred for well over 12 years - much of it at above 10mg. I have no identifiable adverse effects, my bone density is hardly changed and I am only just beginning to have signs of cataracts, no diabetes.

[Phed in reply to PMRpro]

Thank you for your reply, I was really surprised to see you have been on pred for over 12 years, I guess it was just wishful thinking on my part that I would be able to come off it eventually, I was doing really well when I had just GCA got down to 2mg this year (March) then the PMR kicked in and now struggling to reduce the pred. I guess as you say the only way to see how it works for me is try it, why are they always so keen for people to go on Methotrexate? they mentioned me going on it just a few months after I started the pred and I have been just putting it off, I had both cataracts done this year which thy said were brought on by pred but other than that nothing else so far,

[PMRpro Ambassador in reply to Phed]

They are terrified by pred becauae of its history and what they learn at a certain stage of their training sticks. It was used in massively high doses in the early days the 50s and 60s and it took time for them to realise that although it achieved fantastic results with people getting up from wheelchairs and walking, there were longterm adverse effects that could also be life-threatening. That scared the doctors at the time, they passed it on to their students and it perpetuated. Many of the adverse effects can be minimised or avoided when you know how but often they don't know and patients don't like the weight gain and fat face effect.

Methotrexate works in other rheumatological disorders - and they seem to think they are all the same. In fact, it isn't that fantastic in other disorders - a study found that about a third stop because it doesn't work for them and another third because they cannot tolerate the adverse effects but the rheumies interviewed thought that a high percentage of patients on MTX stick with it because it works well for their symptoms. It isn't clear why there is this disconnect between perception and reality amongst rheumies, perhaps the various systems where there is poor continuity of care lead to it. And for 40 years it has been the focus of management of rheumatoid arthritis because it is what is called a disease modifying drug - it reduces the damage done in the joints which is what causesw the dreadful disability that used to be seen.

arthritis-research.biomedce...

Some other countries do tend to use MTX earlier - some right from the start. But there have been no really good studies on whether it does help - an early quite small study that showed that it did result in a lower total dose of pred after a year seems to be the basis for its use but the same team did some follow-up after 5 years and found that the results in users and non-users of MTX weren't dramatically different - and the pred adverse effects were the same in both groups. Which begs the question - why add in another layer of adverse effects? If it doesn't make you ill maybe it is worth it - MrsNails has a good story there - but if it does???????

[jinasc]

Information and Tips for people with PMR and/or GCA from Professor Bhaskar Dasgupta’s talks in Cardiff and Bristol on 24 May 2019 (Patron and the Person who set up PMR GCA UK> Leader in Research)

Bhaskhar Dasgupta.

10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect. Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR. We are searching for resources to conduct high quality trials with leflunomide. Such a trial in PMR is running in Netherlands.

[Benos123 in reply to jinasc]

Oh yes , I would agree that Leflunonmide certainly has something over Methotrexate alright, because although the Methotrexate only "half killed" me over a three month period, I had to stop the Leflunonmide after just six weeks as it had nearly finished me off completely.

Oh & neither enabled any reduction in my 10mg dose of Pred!

[jinasc in reply to Benos123]

Not surprised at all.

When I was diagnosed with GCA after running into problems with Calichew, I made a very personal decision - no more 'add on just in cases'. We will deal with anything that comes along, if and when it comes along. I stuck with pred. My medics were not so happy. I told them 'I will always listen to you' then make my decision, bearing in mind it is my body. I will never make a snap decision I will weigh it all up. I did run into a couple of problems (jaundice was one) but they were resolved.

[Sharitone]

I have been on Mtx for 5 months. It takes uup to 12 weeks to have any effect. The fatigue is deadly, but then it was with GCA/PMR. It hasn't given me any other obvious side effects, but I'm still having to take 15mg pred, so it hasn't achieved anything noticeable. However, you have to have tired a DMARD or two before being given a biological therapy, such as tocilizumab.

[jinasc in reply to Sharitone]

I am curious, "However, you have to have tried a DMARD or two before being given a biological therapy, such as tocilizumab."

Can you tell me who told you this or send me a link to a paper that refers to the use of a DMARD or two?

[PMRpro Ambassador in reply to jinasc]

I imagine there are healthcare systems that do require failure of a DMARD before approving a biologic.

[jinasc in reply to PMRpro]

I imagined the same, but was curious - you know me, curiosity ****** the 😺.

[PMRpro Ambassador in reply to jinasc]

Satisfaction is said to have brought it back ...

[Sharitone in reply to jinasc]

This is a quote from the Arthritis Research UK leaflet on TCZ that I was given by my rheumy a couple of weeks ago: 'TCZ won't be prescribed if you've not tried other disease-modifying treatments first.'However, I see that it was published in 2013, and I've only had one DMARD, so I'm not sure whether it still holds, or even whether the rules are the same for RA as for GCA/PMR

[jinasc in reply to Sharitone]

Yes it was licensed for use in RA in in UK 2013.

GCA in 2018 in UK

I have been following TCZ (Actemra) since I took part in helping to set up trials for use of TCZ in GCA.

[bakingD]

I have just been reviewed - had PMR since May 2018- recent flare went to 6 mg for a week, then back to 5 mg- my consultant said he couldn’t stand up in court and justify putting me on Methotrexate or Leflunomide at such a low dose of steroids- guess it depends how high a dose of steroids you’re on and any bad side effects from them.My consultant is a colleague of Rod Hughes who is often recommended on this site so I really trust his opinion

[Suffererc in reply to bakingD]

My GP wanted me to take MTX when I was only on 5mg Pred. I didn’t

[Phed]

Thank you for all your advice, it certainly has given me something to think about, I’m not keen to go on Methotrexate so I will see how things are in a couple of weeks when the consultant phone’s me I have gone down to 7.5mg today which at least is in the right direction.

[jinasc]

I see you live in the USA (from your profile) and this documentation is from USA.

In the UK, TCZ is licensed for use in GCA and for one year only. Not yet in PMR unless it has changed and I have missed it.