Methotrexate

[Abbey17]

Just had my appointment with the Rheumatologist, he was concerned that I am coming up to 3 years on Steroids (Dec) and wants me to take Methotrexate instead and wean off the steroids. Not sure whether I feel good or bad about it as I don't know anything about it. I have come away with a booklet and will research it, so had full bloods and chest x-ray to check for infections then will wait for an appointment. I would be grateful to hear any feedback from people who are on it. I am currently tapering from 15mg of Prednisolone and currently on 11mg.

[Maisie1958]

Hello Abbey17 I’ve only recently started MTX so not very knowledgeable I’m afraid. I’ve been on Pred for PMR for 6 years, on very low doses though. There are a lot of doctors that seem to think PMR only lasts a maximum of 2 years etc. However last Winter I started to have proper joint problems, responding only to an increase in steroid. I was then diagnosed with inflammatory arthritis and started methotrexate tablets 7 weeks ago as well as continuing prednisolone 5mg /4mg daily to reduce down. I’m not sure there’s any conclusive evidence that MTX helps in pure PMR - others will give you the links to the papers. Saying that I’ve had no s/e that I know of from them (or from the prednisolone to be fair!) and I’m feeling very well atm though too early to tell 🤞 I was very against starting MTX but felt I had to try in my case and so far I’m glad I did. You need to have a further talk to your doctor before you decide as it really does depend on the individual. All good wishes.

[Abbey17 in reply to Maisie1958]

Hi Maisie, thanks so much for your reply, I am seeing my GP on Wednesday so will talk to him, feeling a bit nervous of changing but equally don’t like being on steroids. It’s helpful to hear about other people’s experience with it. I was also told it would burn out in 2 years or less. 🤔 💜

[PMRpro Ambassador]

I do wonder why they give this impression that methotrexate REPLACES pred . It might if they got the diagnosis wrong in the first place and it is really an inflammatory arthritis but PMR itself is being shown to last far longer than the 2 years they are so keen to tell us. A study done at the Mayo in Rochester found that half of patients needed pred for more than 6 years. Only 1 in 5 are off pred in a year, a total of a third by 2 years. A small number of us have it for over 10 years with nothing else identifiable. Dad2Cue posted earlier today about a study from a group at Keele in the UK who have established that a quarter of patients with PMR need pred for some considerable time.

If you look in the FAQs there are various posts about mtx, including MrsNails story - but even on a highish dose it isn't getting her magically to zero pred. I couldn't cope with the overwhelming fatigue - as far as I'm concerned quality of life is crucial and I have to be able to function and I couldn't.

healthunlocked.com/pmrgcauk...

Methotrexate MIGHT help, but there are no guarantees and it has side effects too. I actually felt worse than I had with untreated PMR!!! And that is really not the idea.

[Abbey17 in reply to PMRpro]

Thank you, although he didn't say so I got the impression he didn't think it was PMR because my bloods have been normal from day one apart from once. My GP is adamant it is because of my symptoms. It would be so helpful if you could see the same Rheumatologist every time but it is always someone new.

[PMRpro Ambassador in reply to Abbey17]

My blood markers were never out of what is called normal range - but the ESR was raised for me, running at 16-18 when my personal normal is low single figures. Up to 20% of patients have markers that are within normal range. What a lot of doctors seem blissfully unaware of is that normal range is the range of results you get from a very large population - usually 10,000 or more - not the range of results that is OK for a single person.

I know - there is no continuity of care these days and it really doesn't help.

[Abbey17 in reply to PMRpro]

Thank you, I said that my GP has informed me that a % of people had normal range markers. But he said very very rarely and extremely unusual and certainly not 20% so I’m happy you said that.

[PMRpro Ambassador in reply to Abbey17]

The studies range from 5% to 20% as the figures for markers that aren't raised. It certainly isn't that rare - you will find a lot on the forum.

[Abbey17]

That’s great information thank you, it’s very helpful

[Wales20 in reply to Abbey17]

I have just read the comprehensive review of medical studies into PMR which Dad2Cue most helpfully posted a day or two ago. I found it a very useful read and it has given me more confidence in my rheumatologist. I was diagnosed with PMR over two years ago aged 60 (I am male) and have tapered down my Prednisolone intake over this time, with several disruptive flares. I started on 15mg weekly oral MTX nearly six months ago on my rheumatologist's advice. I have not had any of the unpleasant side-effects some others have experienced though I do miss drinking alcohol (I still have a little). I did get down to 2mg pred (the lowest I have been) but had a bit of a flare again recently so am currently on 5mg. Meanwhile, my 2 year follow up DEXA scan several months ago showed I had developed osteoporosis (T -3.4) which was very likely caused by the pred (I was T -2.2 before). This was upsetting and underlines the need to minimise my pred intake. My rheumatologist wants me to reduce my pred by 1mg monthly and is also considering upping my MTX. It was interesting to read in the medical review that increasing data suggests that Tocilizumab is effective, safe and well-tolerated by patients as a robust steroid sparing agent. I will explore this further with my rheumatologist at my next consultation as a future option.

I hope this is helpful to you and wish you all the best with your recovery.

[PMRpro Ambassador in reply to Wales20]

Unfortunately it is extremely unlikely you will get tocilizumab for PMR since it isn't approved for PMR as the clinical trials haven't been done. In the UK it is available on a limited basis for relapsing or otherwise difficult to treat GCA and there are plenty of hoops to jump through even for that. There are also currently supply problems because of its use in Covid.

[Wales20 in reply to PMRpro]

Thanks PMRpro. That is helpful if disappointing. I wonder if any trials of this drug for those with relapsing PMR are planned, and if so, how I might volunteer to be a part? At least I could try discussing this with my rheumatologist.I do find so many of your comments very useful. Thank you for your dedication. I'm sure many others are grateful for you too. What did you make of the comprehensive review of research paper? According to that, most people seem to recover from PMR within two years or so, and it was just about 25% who go on longer - perhaps we are the more desperate ones who use the daily messages from PMRGCA org?!

[PMRpro Ambassador in reply to Wales20]

I've posted about the paper in the past - what is certain is that a lot of people have PMR for a lot longer than the 2 years they are so keen on pushing, That isn't the only paper - I think the one from the Mayo by Matteson et al is more realistic from my experiences over the years. There is a German one but I don't have a link for it.

practicalpainmanagement.com...

I think that it isn't unusual for patients whose doctors adhere to the 2 year story to just wander away if a doctor is intransigent. Sometimes they will try to change the diagnosis to fibromyalgia - no cure and poor treatment options so they can just shrug and say sorry. Older patients will often just accept that - and blame old age as they did in the past . It certainly isn't as simple as some would have you believe.

There are small pilot studies going on in the US using tocilizumab for PMR but I suspect clinical trials will be considerably restricted for some time to come. Most clinical trials like to start with newly diagnosed patients who are steroid naive - ruling out most of us here, And it will take some years even once they start recruiting.

[Wales20 in reply to PMRpro]

Thanks for this. I had seen this Mayo paper before, which is hopeful. The implication is that my quite fast development of osteoporosis over the past two years is not related to my steroid use. I have some doubts about this as I am otherwise fit and healthy. The sample size in the Mayo study is much smaller, but still significant I guess. It is puzzling how their findings about average length of treatment vary so much from the much larger study. I will try to tactfully raise this with my rheumatologist.

[PMRpro Ambassador in reply to Wales20]

I don't think that is what they are saying - they are saying the rates are similar in people who don't have PMR and aren't on steroids. The figures I have seen quoted are that 40% of patients on steroids develop osteoporosis and 50% of the general population develop osteoporosis at some point. That is a big overlap however you look at it. I suspect that it is likely that steroids DO cause faster loss of bone density in people who would probably develop it at some point, and many patients on pred are also put on bisphosphonates which then reduces that risk. There IS a place for their use, but not the blanket "just in case" prescription we meet so often. However - doing that is easier and possibly cheaper than monitoring the patients properly. Preventative medicine isn't very popular ...

[Wales20 in reply to PMRpro]

Thanks again. I'm going to have my first bio phosphate infusion in November, once I've recovered from a separate operation I will be having later today.

[PMRpro Ambassador in reply to Wales20]

All the best for that too!

[Pixix]

Hard luck...I think if you search ‘methotrexate’ in this group you will find lots of previous posts & information, as it arises frequently...there may even be a pinned post, or FAQ, but I guess you’ve already checked that? Take care, a hard decision, I reckon, & really depends on the diagnosis, perhaps?!

[Abbey17 in reply to Pixix]

Thank you, yea a hard decision

[Hidden]

Hi… I had been on Pred for just over a year and consultant was keen to get me off even though these were the only medication that helped me live pain free to a big extent. I went on Methotrexate and tapered off Pred. Was ok for a short time but stiffness and joint pain came back. I came of methotrexate and asked to go back on Pred started at 10mg and now down to 6mg… again pretty much pain free at mo. I was on 15mg of methotrexate once a week after building up from 10mg. Hopefully they will work for you but I struggled and much better off on Pred

[Abbey17 in reply to Hidden]

Useful to know thanks Graham

[Rottsuzi]

Hi abbey , I just started methotrexate 7 weeks ago simply because I couldn’t get down the prednisolone and I was fed up being on such a high side if preds , I was very reluctant to start methotrexate but felt I wasn’t getting anywhere . So 8 weeks this week the fatigue is no joke and I still take sickness tablets to help with the nausea I’m going to give it a few more weeks and see how I feel but I’m sick of feeling run down I really thought and was hoping it would of gave me a lift but definitely not .

[Abbey17 in reply to Rottsuzi]

Ugh, poor you, makes me think though - all helpful information in deciding what to do

[Rottsuzi in reply to Abbey17]

I think all you can do is maybe try it and see how you get on , hopefully you get on ok x

[PMRpro Ambassador in reply to Rottsuzi]

That is what I usually say - you have to try it before you can honestly say not for me and it MIGHT work. But once you realise it is making you feel worse not better it is time to think hard. My rheumy was fine about it. But he is exceptional!

[Kaaswinkel72]

Hi Abbey. I have had PMR from may 2017 and the whole last year I have been on a maintenance dose ( my words) of 3.5 mg prednison. My GP is blissfully ignorant regarding PMR which I think is “ amazing”( for a better word) …but suits me fine because I manage my own PMR. I know that I am likely to get some eye problem at some stage, but having got away without glasses till now, I just take that risk , can t be too bad…..

Every now and then I try to trick my 69 year old body with “being happy “ with 3 mg, like today, but always end up with the typical PMR pain in my upper back.

My doctor has asked me if I want to be referred to a rheumatologist and I have always politely but firmly declined for the exact reason that somebody who thinks they know more about my PMR gets “ concerned” and thinks I should take methatrixate or something else related to that and disturbed my whole equilibrium.

Make sure dear Abbey you inform yourself about PMR and the various medications ( this forum is fantastic) and remember : my body my choice. So far I have never seen a rheumatologist and reading this forum on a regular basis I don t think I have missed much. If I did nt say it before: inform and with that empower yourself. Aroha for all.

[Abbey17 in reply to Kaaswinkel72]

Thanks so much for that, I appreciate it. I am researching it and the more I read the less I want to take it. You are right in what you say x

[sampete]

I am on Methotrexate and have had no side effects at all .

[PMRpro Ambassador in reply to sampete]

Have you been able to reduce the pred? That being the main point It IS always worth a try - if you are OK and have no adverse effects.

[sampete in reply to PMRpro]

Yes was on 10mg now 8.5mg in 6 weeks. Rheumy Nurse has now increased methotrexate for next 4 weeks but said to stay on present dose of pred until she sees me next month.

[Wales20]

Thanks for this. Tocilizumab does sound like something of a wonder drug but sadly I am told that there is no way yet that this will be prescribed in the UK for PMR, but I will still raise this with my rheumatologist. I agree with your comments about the much larger sample size, but it is still surprising how much the Mayo study is at variance with the larger one. Nevertheless, the Mayo study offers some hope that long term steroid use may not be as damaging as previously thought, especially on low doses.

Good luck with your ongoing recovery. 12 years is a heck of a long time to have been suffering ...

[Portopetro]

Hi AbbeyI started methotrexate about 3 months ago as my rheumatologist did not want me on steroids for too long . I am now tapering on my steroids and am down to 3.75 mg .

I have had a couple of mini flares since starting the methotrexate but think this is could be due to the tapering of the steroids and overdoing the exercise.

I have decided to totally commit to the methotrexate for six months having spoken to three people I know who are on it and to my son who is an anaesthetist who tells me it is far better for my body to be on long term methotrexate rather than long term steroids.

I seem to be tolerating it pretty well . It does about 3 months to fully kick in.

My hope is to be off steroids by February 2022 and only on methotrexate but will just have to see what happens.

All the best

[Abbey17 in reply to Portopetro]

That’s good to know, and that’s my consultants reason for me to be on to reduce the steroids . Took my first one last night so hoping I tolerate as well as you. Many thanks