Extreme fatigue caused by Methotrexate.

[Campaigner]

Is there anyone who has experience of extreme fatigue possibly caused by Methotrexate.

I am 73 years of age and previous good health.

I was diagnosed with acute Rheumatoid Arthritis in March 2018.

Have been on high dose of Prednisolone and trying to reduce - now on 12.5 mg

Began MX beginning of August 2018 - I now have fatigue which is getting worse. I know RA itself causes fatigue also reducing Prednisolone.

I am lucky to not have any pain, possibly because of the steroids.

Any advice or help would be very much appreciated, as I struggle to find the energy to leave the house when the fatigue is at its worst.

I have had to buy a tri walker to help me walk and share the weight onto my arms and shoulders.

I should not complain as compared to others I am very lucky.

[Jacey15]

It's such a coincidence that you have posted this as I was just googling methotrexate and fatigue. I've been off methotrexate for 8 weeks because of a tonsillectomy followed by a prolonged ear infection. My fatigue levels have reduced enormously. I start methotrexate again tomorrow but am not looking forward to it. I've also had iron deficiency anaemia and a number of other conditions that cause fatigue. I agree fatigue is very debilitating. At its worst, I've considered peeing on the sofa because I haven't had the energy to get up to go to the loo (I didn't 😊).

[Campaigner in reply to Jacey15]

It is good to see that you have kept your sense of humour.

One thing I hate also was the bloated face etc from Prednisolone. Tried to make a joke of it, but it really hurt when people did not recognise me.

[daisychains58 in reply to Campaigner]

I hear you...my GP asked if I had put on weight, hadn’t seen her for about 6 weeks, I’d been in hospital for 3 weeks on high pred and my face was fatter. In fact I had lost near 8 kg since I had last seen her. 73 kg down to 65 lol. I’m down to 5mg pred now and I think I have some cheek bones reappearing. 😊. Gotta try and keep happy somehow.

[sylvi]

I aven't heard of that,but nothing surprises me with the disease and the drugs that go with it. I have trouble with my eyes and my chemist looked it upn and yes RA was the cause.xxx

[Campaigner in reply to sylvi]

I have an eye test and new specs 3 months ago and need a retest as my eye sight has definitely got much worse in that short time. Everything is blurry.

[daisychains58 in reply to Campaigner]

Mine did too, I’m off it now.

[oldtimer]

Is your fatigue worse just after your methotrexate and gradually improve towards the time for your next dose? If so it might be that, but fatigue is so common together with Rheumatoid Arthritis flares that it may just be making the problem worse?

Usually as the inflammation settles down with treatment the fatigue gradually improves - but it can be a real problem and something so difficult to explain to people.

I found the 'Spoons Theory' helpful to understand that I only had so much energy each day and if I used it all up in the first hour then the remainder of the day has to be spent resting. If you Google it you should find it - if not ask as someone on here will have it!

I try now not to plan to do more than two things in a day as I have found from experience that three things mean I have to rest all the following day.

[Campaigner in reply to oldtimer]

This has just struck a chord with me. I think you are right, I do get worse for a few days after the Methotrexate. Take it on a Wednesday night and for some reason Friday and especially Saturday is worse. I always feel absolutely 'lousy' in myself too.

I shall mention this to Consultant when I see him tomorrow.

Brilliant to have these responses - thank you so much.

[daisychains58 in reply to oldtimer]

Yes, yes I agree. If we overdo it when feeling ok you pay big time for days later. Very wise advice oldtimer.

[Hidden]

I am exhausted all the time, but I was like that before being on methotrexate so I don't know if that is the cause of it or not. The trouble is that like most of us, you are probably on many other medications as well and maybe they might be the cause of it or it could be that certain mixes make you extra tired. I wear morphine pain patches and take oramorph as well as tramadols and paracetamols so it could be any of them that are causing fatigue in me. I know how you feel though. I am falling asleep so much and it gets me down. I am 67 and feel that I am wasting my life being asleep. I fall asleep watching TV programmes that I really want to see and as soon as I start reading I fall asleep. It is all so frustrating. If you get any answers please do let us know.

[Jules13 in reply to Hidden]

Are you on Tramadol because of the pain??? How long have you been on it because it is not a great long term drug to be on, sorry to say. I was on it for 4 months after knee surgery and my surgeon kept telling me to wean myself off asap, and sent me to a pain clinic to get alternative pain help. Do you have pain medications review often because you are on quite a cocktail, I hope you don't mind me saying that. xxx

[Hidden in reply to Jules13]

Hi Jules, yes I am on tramadols because of the pain. I try to keep them down to taking 2 x 50mg twice a day with two paracetamols, but have been told that I can take them up to four times a day. I am worried about the amount of tablets I am on, but when I go to see my rheumatolagist, my GP or go to the pain clinic they don't suggest doing anything else. It is getting me down now.

[Jules13 in reply to Hidden]

That’s still quite a big dose of tramadol I hate to say, especially with morphing patches and oral morphing. That’s 3 types of opioids.

Where is your pain? Or is it all over body pain?

Im surprised the pain clinic says nothing about the tramadol? They haven’t suggested ibuprofen patches or a codeine based painkiller other than tramadol.

I was changed to slow release diclofenic after I came off the tramadol. And I now have good success with the RA drugs enough to come off the diclofenic. I now just take paracetamol. And also have steroid injections in my knee 3 times a year.

I cannot advise or shouldn’t, because I don’t know your medical history or how long you’ve been on medication. But it’s very unusual to prescribe 3 opioids for RA from what I’ve read. You are still in quite early diagnosis so maybe your medical ream has a longer pain plan for you. X

[Jules13 in reply to Hidden]

I’ve just noticed you say in your post that you aren’t in pain because you’re taking steroids. So are the morphine based medications for other pain?

[Hidden in reply to Jules13]

Hi Jules, thank you so much for replying and for your interest in me. I didn't say that I am not in pain, at least I don't remember saying that. I am in pain all over but the worst is in my arms, shoulders, knees and lower back. I can't take ibuprofen as it is aspirin based and I have asthma and also an hiatus hernia which means it is not safe to take anything aspirin based.

I was prescribed Tramadol by the pain clinic when I went there about fourteen years ago. At one point, probably about ten or so years ago, I managed to get off Tramadol for a few months as the pain was getting a lot better. I do have occasional steriod injections in my knees but only if I keep on asking for them, there is no plan to it.

I was diagnosed a long time back and things have only got worse over the years and there doesn't seem to be any plan to help me in any way. I have seen several different doctors at the rheumatology clinic that I attend and they all say the same things to me. I have asked if I can try biologics many times and the answer is always no and they say it is because I have mainly OA more than RA, but I don't think it is fair to say that as if one condition improved it would help. I am only taking 5mg of steroids a day just as a maintenance dose. When I have been put on a higher dose (usually if my asthma gets bad due to a cold) the pain gets a lot better, but I can't remain on a big dose of steroids like that.

[Jules13]

The steroids made me very very tired but unfortunately the chronic fatigue is a symptom of RA. I'm now on methotrexate (for a year) and even though I have most symptoms under control I still get floored by the tiredness. You have to adjust your lifestyle a bit. I know, for instance, that if I have a very busy day, then the following day I have to not schedule too much. If I go out for dinner one night, I stay in the following. Pace yourself, and rest when you can. Once you are off the steroids, you might feel better x

[Hidden]

Oh yes. I remember feeling completely floored on methotrexate. I tried injections to see if that would improve things. It was just as bad. I gave up in the end because it made me depressed too.

I hope you feel better soon.

[Jules13 in reply to Hidden]

The steroids are also a big depressant. As soon as I came off the steroids my mood significantly changed. The occupational health team always told me to be very aware of my low mood and that steroids are the main cause. I’m sorry the methotrexate didn’t work for you. It took a good few months for me to get used to them.

[AgedCrone]

You have only been on the Mtx for 6 months haven't you? It does take different people very different times to get settled on that Dmard.I found the fatigue never completely went away, but it did get a lot better.Let's say I preferred to feel a bit tired to having the awful painful symptoms it controlled. I was on Mtx very successfully for 7 years.

Do talk to your Rheumy nurse about getting off the Prednisolone ASAP. The longer you take it.....the more difficult it is to stop. You could ask the nurse about having a long lasting steroid injection, which as I could not take Prednisolone I relied on for quite a while.

I do hope you find the best treatment regime for you very soon.

[Rheumagal]

I have Ra fatigue daily but for me it did get worse, much worse on methotrexate.

Hope you feel better soon. Maybe it will resolve itself with a little time?

All the best ❤️

[Lina282]

Hi, I am on Methotrexate 15mg every Monday and Hydroxi 200mg every day. I have seronegative RA and Fibromyalgia. I also have some congenital heart disease and syringomyelia.

I am fighting with very bad fatigue and nausea every day but it's definitely worse at the beginning of the week when I take my dose of MTX.

I don't smoke and don't drink any alcohol but the fatigue doesn't leave me alone so really feel for you.

My occupational therapist said that a healthy diet can help but I didn't notice anything.

Sorry if I wasn't any help but I really understand you.

Gentle hugs xx

[Jules13 in reply to Lina282]

Have you tried injections for mtx? Stops the nausea.

[Lina282 in reply to Jules13]

I mentioned this side effect to my rheumy but he didn't offer this change from tablets to injections. Or do I have to ask for it?