I was started on Methotrexate 3 weeks ago. My Rheumatologist said in my consultation it was up to me but people die earlier on pred than metho!! He then sent me instructions and a prescription so I felt I had to give it a go. I am currently on 12mg pred having started on 35mg Oct 21. Depressingly I am nearly 30lbs heavier, sleep badly and have all sorts of stiffness I never had before. However, since starting the Methotrexate I can hardly keep awake and so far I am still on 10mg to increase to 20mg next dose. My blood was ok and the docs note said they could see no reason why I could not double the dose next time. The trouble is I now have no life as I have to have a sleep in the morning as well as the afternoon. We were driving to Dorset to see relatives and I was unable to drive after 40 mins as I could not keep awake. Is this a common reaction to Methotrexate. Should I try to hang in there in case it improves or shall I at least grab some sort of life and quit taking the Metho. Is this a common reaction. Otherwise except for a dodgy stomach and the headache I have not felt too bad. Thank you.
Methotrexate and tiredness: I was started on... - PMRGCAuk
Methotrexate and tiredness
No experience of MTX sorry, but there is a lot in FAQs.
healthunlocked.com/pmrgcauk...
As for - My Rheumatologist said in my consultation it was up to me but people die earlier on pred than metho!!
If you are falling asleep whilst driving with MTX, I would dispute that comment…😵💫
I wasn't particularly SLEEPY with MTX but the fatigue started a few days after the first dose and got steadily worse - until I stopped to go on a business trip to South Korea with my husband, I never restarted - by the time I came home I was feeling human again. I just couldn't function day to day.
I might have lived longer with MTX but it wouldn't have been any pleasure.
Thank you it really helps to hear the experience of others. I feel OK the day I take it and the next day but after that I can hardly open my eyes. To me this is no life. I feel the pressure of the Consultant to continue so struggling a bit . Mind I don't feel as great on the pred as I did at the beginning but I do think there is a lot of relief in the early days that something works (before the pred side facts really kick in) 😀
Most pred side effects can be managed when you know how - I can't say I have any now that are bad enough to bother me. Are you on ENOUGH pred to manage the PMR?
But you need to say no to the MTX if it makes you feel that bad - my rheumy was fine about it, just accepted I had tried.
. Mind I don't feel as great on the pred as I did at the beginning but I do think there is a lot of relief in the early days that something works (before the pred side facts really kick in)
Most, but not all, feel good on initial dose, but that's because it's more than you actually need on a day to day basis.. and as we say very often, the aim is to to try and maintain that feeling whilst you taper [not always achievable] but as near as is possible.
As for Pred side effects, as PMRpro says most can be managed, and honestly, better a little extra Pred to manage PMR than MTX that seems to wipe you out.
i started on silly doses for GCA, and can't say that Pred caused me much angst in the side effect line - apart from the normal moon face and extra weight gain... and one bout of oral thrush. ...All now a distant memory.
I suspect I should be on a higher pred dose but reviously I did get down to 10mg and felt good until I had a flare when I reduced to 9.5. I then had to go back to 15mg to get control. I might stay at 12 for a bit but I am using the really slow taper too. Thank you DL. I was having crisis when I was too tired to see my grandson. What is the point if you can't see your loved ones. Xx
What is the point if you can't see your loved ones
No point in being on MTX whatsoever…
Hope you are soon in a better place…🌸
None whatsoever - he needs to read this
ard.bmj.com/content/early/2...
says
"Management of GCA and PMR should be based on shared decisions between patient and physician recognising the need for urgent treatment of GCA to avoid ischaemic complications, and it should aim at maximising health-related quality of life in both diseases."
I have been off prednisone for 8 weeks and I am having a flare now. Had phone conversation with rheumy yesterday asking for more prednisone so that I could could go back on low dose of 1-2mg. He refused to give me the script and insists I go on methotrexate. His reason is that I have been on it for almost 4 years and it’s time for methotrexate. I have refused it and he said we will discuss it on my next appt (Wed). It makes zero sense to me to do that. I was well controlled at 1mg of prednisone. I’m really afraid of side effects from methotrexate. I have significant GI issues and can’t tolerate many meds. Let me know how you make out with the methotrexate or if u stick with the prednisone.
That is depressing, especially when you know such a small dose of pred would do the trick. As you can see from the responses to my post quite a few people get on really well with Metho and there is definitely a drive towards it. I am going to speak to the clinic and try to drop the metho for a while but if I can't make progress I guess I will have to give it a go again. I think tho if I had managed to get off pred I would do anything to avoid taking it again. Good luck. X
I restarted MTX following operations and bronchitis. Thursday is MTX day. 15 mg - wiped out yesterday and spent most of day in bed. It’s only 5 weeks since eye op and bronchitis so I need to have more rest anyway. It does make me tired but it has wiped out the inflammation and stiffness so I’m persevering with it. Mrs N has written in the FAQ a wonderful account of her top tips for MTX - her account is very comforting and reassuring I found. I do drink a lot of water as she suggests and it really does help. I do understand how you feel. For me… it sounds maybe daft but I look forward to the day I take it but the day afterwards 😫. Good Luck on what you decide. 🌷
I have been on MTX since 2021, I was told takes 12 weeks before you notice any improvements. I do feel very fatigued for couple of days after day of jab. Oral MTX made me nauseous so was changed to Metojet pens. Hasn’t helped much with tapering as have had flares and uti infections which specialist nurse thought could be due to MTX. I have asked I could stop MTX but nurse says to carry on. I don’t see consultant any longer as they don’t think it necessary. Still have regular blood tests and phone nurse helpline if any problems.
If your doctor thinks it’s necessary might be worth a try. Good luck.
My Rheumatologist said in my consultation it was up to me but people die earlier on pred than metho!!
I would be very interested to find out where your rheumatologist got that bit of rubbish from. Some medics seem to live in a parallel universe.
I wonder if he took a study out of context
healio.com/news/gastroenter....
where it is acknowledged that optimum disease management using biologics and co results in improved life expectancy - who'd have thought?
OTOH, a rheumatologist might choose this study
ncbi.nlm.nih.gov/pmc/articl...
relating to RA, However - the authors do say
"... because prednisone is often used to treat patients with more severe RA, it is still unclear if the increased mortality risk is due to the medication or related to its use by sicker patients "
In the case of PMR though, the drug of choice is corticosteroids and PMR is NOT RA. The DMARDs are the initiating drugs of choice for RA and have been for many years. One assumes that a combination of pred with MTX leads to better disease control - and longer life expectancy.
A comparison would be like one of apples and pears ...
And a PS - anabolic steroids DO shorten life ...
However - as far as I'm concerned a shorter decent quality life is preferable to a longer but rubbish QOL. It is slowly dawning on the world of oncology that many of their patients feel the same when they are at the stage of no cure being possible.
It is just such a stupid, non sensical thing for a doctor to say. Common sense tells you that. It just sounds like a way of getting someone to do what they want.
They do say that people with PMR live longer because they have more medical checks.
He did quote patients with RA saying how they used to be in wheelchairs but you hardly ever see that because of metho. However as you say this is not RA. I have osteoarthritis in my shoulders which might result in an op but that is different. 👍
There seems to be a lot of pressure to get people off pred in spite of the poss side effects from Metho. I have decided to call the clini Monday and tell them I am not carrying on at the moment. I want a bit more time to see how I get on with tapering. Thank you for your support it really helps. X
You are right, a lot of doctors seem to be really frightened of steroids like some people are frightened of spiders. There is no really good reason for it. I can understand surgeons being worried about healing and the possibility of infection, but that is different.
piglette, i is next to o, though in context I prefer your version. Yes, words like 'phobic' and 'hysterical' had occurred to me.
I think some are just ‘bears of very little brain”.
I've come to this a day late but my experience on methotrexate was shocking..had no life at all, was exhausted, miserable and slept 18 hrs a day, Rheumy reduced the dose but it didn't help. After 6 weeks I started on Actemra and haven't looked back, now on 2mg prednisone after 16mths...it's taken a while but life on metho wasn't worth living, tho I appreciate some folk don't have those issues. It's all about quality of life, not how long we live!
Best of luck
Thank you. Sadly that is how I feel. I feel less guilty having heard your story.
😅 so true and rather arrogant.
RachelJDH if it's of any help, I had the exact opposite reaction to MTX. After 2 years or so of barely moving from the couch on just Pred, adding 10 mg of MTX was the thing that gave me energy and life back.
I don't know if it will improve for you, but most likely if I experienced what you are going through, I'd abandon the MTX, and certainly NOT up the dose.
My rheumy fed me the same story re Pred having more comorbidities than MTX.. If you look at the comorbidities lists for both, I suspect this is very person specific, ie our overall health and what each of us is more susceptible to. Hope it all improves for you.
Thank you that was helpful. Everyone has been very supportive which really helps when you hear from people who have experience of the disease and the treatments. Xx
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