Hi, I hope everyone is getting on well with their journeys and I would like to thank everyone on this site, especially the experts, for their tireless support. I recently (after four years on pred) had an appointment with a rheumatologist who was very nice. We chatted for a half hour and he examined me, then sent me for bloods, chest x-ray and dexa scan so that I can start on Methotrexate. I have now seen the rheumatology nurse who spent time explaining how it works, what the side effects are, asking lots of questions. She described it as a "big drug" which is why the hospital tends to prescribe it rather than the GP. I am being kept on 5.5 mg Pred reducing to 5 mg in a month's time. Blood tests every two weeks then, assuming all is okay, reducing to monthly. Does this sound about right? As I understand it, it has the effect of suppressing the immune system but is more powerful than pred (I am guessing more expensive) so they don't prescribe it to start with. She said it can cause nausea so a lot of people prefer to take it in the evening so they can sleep through it! I also have prescription folic acid to take with it. I took folic acid anyway, just from Boots, but she said I needed a bigger dose now. It all sounded okay but I feel a little bit trepidatious about taking it. Are there many success stories of people then getting off both drugs?
Methotrexate: Hi, I hope everyone is getting on... - PMRGCAuk
Methotrexate
You will get loads of replies, some for, some against plus there are related posts and a whole section on MTX in the FAQs.
healthunlocked.com/pmrgcauk...
It may be brilliant for you, it might not, but you won’t know until you try, and if it doesn’t suit you it can easily be stopped.
Good luck with it, and please let us know how you get on.
Hi I have been taking methotrexate for the past 3 years for GCA/LVV From my own experience I did not notice any change in my condition but did have a few side effects.As for the best time of day to take it I found that around mid morning suited me best.Started off taking it after breakfast but this made me very nauseous so tried later which suited me better.As for cost methotrexate is cheap as chips.It is the choice of many rheumatologists but not all.Having read lots of comments on here it seems treatment is not the same but dependant on where you live.I see you have had a discussion With your rheumy nurse.I have been under the hospital since March 2020 and have never seen a nurse in all that time.I think it’s controlling my condition so you could call that a success.
It isn't used from the start because while it can have a brilliant effect for a small number of PMR patients there is, as yet, NO evidence it really makes a difference in PMR although it is the first line treatment for patients with RA. There are currently a few studies ongoing but it will be a year or two before they report - Covid messed them up! One in the USA reported recently and said it doesn't make a significant difference. someone posted about it and here is an article:
rheumnow.com/news/say-goodb...
There are lots of Related Posts listed, it is discussed a lot.
I tried it - I failed it!! The fatigue was out of this world and I gained weight. It potentiates pred effects. All of them - so I felt hungry where I had never been hungry on pred alone!!!! I lasted a month.
You may also not be able to reduce the dose of pred ad anyway, at this stage adrenal insufficiency is very much a factor and it can take a lot longer than a month to make up for a 1mg reduction in pred. If your experience doesn't tally with what they tell you - stand your ground.
Thank you for response. Makes it feel all a bit hopeless. How long should I give the Methotrexate to work?
You say a month but you had bad side effects. Supposing I had no side effects, should I just keep going in the hopes of a pred reduction at some stage? I don't get any major side effects or fatigue at the moment like some of the people on this forum sadly do, so I am a bit scared that I will be upsetting my body for no benefit!
I've never been on MTX, but it does work well for some, unfortunately you don't know until you try it. So maybe give it a trial for a few months - it does take some time to prove itself.. if it works, then great, if it doesn't then you can just stop it.
I wouldn't say hopeless, never that. But it ISN'T the answer they sometimes think it is and you need to know that. You have to give it a few months to see if it works and that isn;t a problem when you have NO side effects and many don't. But 5mg is a reasonably low dose anyway and I would never accept feeling worse on a second drug just to get below 5mg. As I say, it can make a big difference for some - just it isn't guaranteed.
I tried Methotrexate for around six months but had to abandon it as it played havoc with my liver. I had no other side effects. I didn’t feel any better or worse. I’m now on Leflunomide and am at 5mg of Prednisolone. You won’t know if it suits you until you try.
When you say it played havoc with your liver, how did you know it was your liver, what were the symptoms, if you don't mind my asking?
When you are on MTX you are monitored with at first monthly blood tests that are then spaced out more if you are stable. They show if liver enzymes are rising, you don;t rely on symptoms.
Hi LMali
Re your query, think there’s some mistake. I’ve not been offered Methotrexate. Still tapering down since 2022 after a bumpy year or so with added health problems - Afib, TIA, AI after getting down to 2.5mg. Am currently on 7mg and will reduce on return from holiday. There is life in the middle of it all though. Currently on the last day of a Caribbean cruise with a week to follow on Barbados with friends to celebrate our ‘big’ birthdays. Since the last long haul in 2020 my travel back pack contains a myriad of meds! Good luck with your next steps.
Think the question was addressed to Noni72 - you can see just above any reply if it’s addressed to another member rather than the author.,
Interested to see further comments on MTX as at my diagnosis consultation I was told the intention was that this would later be introduced as a sparing agent to reduce Pred more quickly but my research and personally knowing people who have suffered some nasty side effects led me to write to him to express some of my concerns given that I couldn’t see it would be of much benefit to me (no response) You are so lucky to have had a rheumatologist (and nurse) to spend time talking things through with you. Although his follow up letter to my second consultation said he had an in-depth discussion this consisted of him giving me leaflets for MTX and Leflunomide and asking me to contact his secretary to say which I wanted to take. Re my comment about side effects he said for everyone who has any he could show me a lot more who haven’t and then made a jibe about comments coming from people who are not medically qualified (ie people like yourselves sharing their experiences). I know there are a lot of people MTX may work well for but most cases that get mentioned are where people have tolerance issues with Pred or it is introduced when joint and muscle pain returns when tapering and in cases of relapse . I also don’t understand the hurry as this is after 6 months and I feel (apart from knocks giving skin tear issues ) Pred is working well for me. So far I’ve not had such aches and pains as part of my symptoms. What I did have from the outset is extreme fatigue so I worry that this would return as I understand it is a common side effect of MTX . In the drug notes I also read that combining MTX with Pred can increase the side effects. I’ve told my consultant that at this stage I would prefer to just stick with tapering Pred on its own to which I’ve had a not too helpful letter of response but I felt I had to weigh everything up and decide what’s best for me rather than being bullied into taking yet more drugs that might make things worse. Either way we’re all different so it’s a case of “suck it and see” . I do hope MTX works for you as I share your concerns of upsetting your body for no benefit. I would be interested to know how you get on Good luck
Should explain to this arrogant creature that the people who know most about adverse effects are the people who take the drug!!
I can't find it now. but a study actually found that the patient experience of MTX - for a third it did nothing, for a third the adverse effects including liver were intolerable and only for a third did it work and was bearable - and the rheumatologists view - wonderful, effective drug with next to no adverse effects - diverged widely!!! And that was in RA where it is the first line medication!!!!
I agree he is arrogant and as I’ve posted before he doesn’t listen or allow time to discuss just states his views. In a tactful way I have responded to say how I feel people living with and managing this illness over many year also offer valuable support by sharing their experiences. As for MTX he referred me to the ELAR guidelines ( which I had previously read) which I had noted recommended it for people who were obese or had the other issue I mentioned in my post. It also stated that in 3 random trials it showed a modest benefit which I didn’t think was that encouraging. I also read quite a few references to studies where for LVV patients reported it did nothing for them. I’m sure it is great for many but for now I’ve made my choice and will put up with him going into a sulk
There is a recently published US study showing it does nothing:
rheumnow.com/news/say-goodb...
and some other work that could account for WHY is doesn't work for everyone
healthunlocked.com/pmrgcauk...
Just been discussing this as a problem - educated patients (which the doctors present like) who meet with arrogant doctors (who obviously we patients don't like). It is infuriating when sometimes patients are better informed than their doctor ...
Crikey. I've read the articles and now feel like maybe I won't bother taking the Methotrexate. I don't think the rheumatologist was bullying me, he was trying to help and I guess that he figured after four years on pred we needed to try something else. I might just do nothing for a while. I've picked up the methotrexate (and prescription folic acid) and it is sitting on the side. Waiting for me to delve in. The worst thing is, it recommends you don't drink alcohol while taking it! Are they trying to wring what little joy I have left from life?! I am already cutting out lovely delicious carbs because I am pre-diabetic (because of pred?). I actually feel fine. Maybe I should not have seen the rheumy at all! I'm just going to go for a walk with the dog and think about something else for a while!
It IS worth trying - for some patients it makes a massive difference and gets them off pred AND then they get off MTX, But you have to try it to find out if you are one of the lucky ones - or someone for whom it makes life worse. The alcohol bit is because they both affect the liver and some people develop liver problems so have to stop MTX. It also depends how much you drink - in RA patients the risk was found to be no greater provided they remained within the 14 units a week recommendation.
nras.org.uk/resource/modera...
Thank you PMRpro, yes, I guess I should give it a whirl. I might get lucky. I will certainly keep people updated as to how well it works. I'm having fortnightly blood tests to start with for liver and kidney function and some other things. So hopefully we will know quite soon if it is having adverse effects. Thanks for all your advice and information, I really appreciate it.
Hi LMali, it’s just a roller coaster ride isn’t it? I’m due to start MTX injections on 11/3 and I like you am full of trepidation. However my reasoning is that if I don’t try it and it would have helped it would be a loss, but reading the good advice the experts have cited…if it does not suit it can just be stopped.
I am currently on 12.5mg Pred following a flare up of PMR and following the Flare protocol. If it wasn’t for this site and the experts invaluable advice I think I’d be totally gaga by now !! I wish you much good luck and fingers crossed MTX will be a positive addition against the heller that is PMR😉
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