Hi all.I've an annual (actually 16 months) review next week. First one since being diagnosed and I want to try and get the most out of it.
I take MTX, 20mg weekly (orally) and folic acid 6 days a week.
The MTX seems to be working in terms of joint pain and CRP is usually close to zero. I get mild pain, but that might be unconnected to RA.
My difficulty is the constant fatigue, brain fog, mild headache and tired, almost achy eyes.
I work full time and really feel these things are effecting my work and ability to function. I'm 60, and work as a senior manager in a role many would consider quite stressful. At times I feel i just can't continue to work for much longer. My concentration and memory also feel impaired.
I don't know if it's the MTX, the RA or something else. Can you have these symptoms caused by RA, if the RA is under control?
I don't know how much to push it when I speak to the rheumatologist next week. Is it just something most RA sufferers live with or is it reasonable to expect to feel better than I do?
Be grateful for any thoughts and advice.
Seb.
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Sebastian247
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Hi. Aeons ago when I first was on MTX I couldn’t function four days out of seven due to the brain fog, malaise, fatigue, lack of everything that made life bearable. I persevered for four years as thirty-odd years ago there wasn’t much else but in the end rebelled and stopped it. My rheumatologist was fine -he’s known me all this time - and started me on something else (can’t remember what) and all the horrible symptoms described disappeared as soon as MTX left my system.
Many people get on well with it though if you read all the posts relating to MTX you’ll find many complaining about your problem. It may well be working in terms of your joint pain but there’s now many, many drugs which can be prescribed which don’t mess with your head the way MTX does. I loathed the side effects and was working as a senior clinician in the NHS but couldn’t concentrate on my job.
Talk to your rheumatologist at your next appointment and tell them what you’ve told us. People are often prescibed MTX initially. It’s cheap and effective but def doesn’t suit everyone. It’s your body and you don’t need to take anything that makes you feel worse! Best of luck.
I really find it hard to tell if it's the drugs, the RA something else or just me getting older. So thanks for sharing you're experiences. My symptoms are so similar to what you and others have experienced it seems unlikely to be coincidental. I'm not good at speaking up when it comes to doctors, but you've given confidence. Many thanks.
It’s really difficult to challenge doctors but they do a job like anyone else and you’d certainly challenge your builder if you thought the outcome could be better on your house!
I have worked with doctors all my long career as a senior nurse and I know patients who are perfectly articulate find it hard to talk about their health the minute they get through the door of the consulting room. It’s an old hangover to when nobody dared to question what they were given and mostly didn’t understand the disease process or its ramifications. Get clued up, talk to NRAS team if you need help to formulate a list of questions and preferably take someone with you to your appointment so amid the brain fog you don’t forget what you’re asking or are told!
Any reasonable doctor will listen to why you're having problems andhelp to find a solution. If they don’t, and you’re not happy, go back to your GP and get re-referred.
I'm one of the lucky ones for whom Methotrexate works well without too many side effects but if I were you, I'd definitely be pushing for a change. I've found that any mention of struggling to work has met with a real effort to help - I suspect that ability to work is something they're encouraged to deal with! This is despite being 63 (diagnosed at 59) so hopefully your consultant will be helpful.
Hi, at my annual review with the Rheumatology nurse this week the one thing I highlighted was fatigue. I told her I felt like I could just lie on her floor and go to sleep! She said studies have shown Methotrexate can cause fatigue and the only way to tackle it could be to reduce my dose (I'm on 25mg subcut). However I don't want to reduce as my RA is controlled at the moment and when I tried to reduce previously my old problems came back. She said, Hobsons choice really!! Could you reduce your dose to see if that helps? We're all different and a reduction may well work for you.
Thanks, the fatigue makes me feel exactly the same, which makes working really tough at times.
I started on 15mg but that didn't work so I'm on 20mg now. I'd be prepared to reduce it to see if it helped. But I'd also hope I could be offered an alternative. Cheers.
When Methotrexate -25 mg subcut - and Hydroxychloroquin weren't controlling my RA, Sulphasalzine was added which made a big difference. As the higher dose of Methotrexate meant that my "hangover" was lasting longer (2 or 3 days rather than 1) I asked if I could reduce it to 20 mg which I did without any problems. Recently, I asked to reduce again to 15 mg as I felt that the Sulphasalzine was doing a lot of the heavy lifting and my consultant agreed; she did ask why and I explained that I'd like to reduce the side effects if possible although I COULD cope with them and would be happy to increase the Methotrexate if my joints complained. So far, so good 🤞I'm not suggesting that Sulphasalzine is right for you, just pointing out that other DMARDS are available and that it's always worth asking if there's something else to be tried or if a dose change is practical.
I do feel that RA has affected my energy levels - friends of a similar age are able to do much more than me without feeling wiped out - but I also know that Methotrexate adds to my fatigue, I'm just lucky that it's short-lived and manageable.
Thanks. It's heartening to hear you were listened to and it worked out better. I feel the same about energy levels compared to others. Most days when I get into the office I just want to lay down on the floor, even if I've had a decent night sleep.I appreciate your advice about other dmards. I'm open to anything that may change how I'm feeling. Sulphasalzine didn't work for me, but hopefully something else will. I'm feeling better prepared for this Tuesday thanks.
I’m exactly the same. I had to reduce my days at work from 5 to 4 because of the fatigue. I’m also on sulphasalazine and the combination of that and Mthx have been very effective so I’m loathed to start tinkering around.
It depends. I found injectable MTX to be better in that I stopped being sick and I just felt it worked better than the tablets for me. However the level of fatigue was/is the same on both for me.
fatigue and all symptoms you have I get and unrelenting and any work stress won’t help either. It’s how to manage it. Eye drops might help as many of us get very dry eyes. I was useless on MTX slept most of the time.
Hi. Sebastian. If you were a woman. I would have said those symptoms definitely sound like the menopause!!! I know. Because i’m going through it. Bloody awful. But you’re not a woman. So i won’t suggest it! It’s probably the MTX. I was on that yrs ago. I have an Infliximab infusion every 6 weeks. Fantastic drug. Fatigue comes with RA i’m afraid. That’s one of the main symptoms. I’m sick of being tired! Your job sounds very stressful. Any chance of you going part time? A stressful life can really take its toll on your joints. Treat yourself more. Good luck x
Things would have taken an unexpected turn if it was the menopause! My partner went through it a few years ago so I really feel for you.I am unclear if RA still causes fatigue if the disease is under control.....It it didnt it would be obviously the MTX causing it and I would feel more certain changing drugs was the answer.
Sadly reducing my hours isn't an option, either financially or practical for my employer. I've suffered from anxiety and depression from childhood, but its become a much bigger problem over the last decade. So my tolerance to stress is very poor these days. Great to hear you've found the right treatment. Best wishes and thanks.
Hi again. I’m sorry you suffer with depression. My ex partner has always suffered with that. It can be very tiring too. Have you thought of yoga? Or swimming? Swimming’s very gentle on the joints. I get fed up. That’s when music helps me. I love to sing jazz & soul. It takes my mind off my crap. Cheers me up. (But so does a slice of cake & some wine… ) Good luck again. X
Definitely wine! Then the blood tests said too much! So I've cut right down. Luckily i live near the sea and find cold water helps my mind and mood. It's too cold for me over the winter, unlike some hardy souls. But maybe in another month, something to focus on and look forward to. Cheers!
I agree totally with your menopause comment and thought exactly the same, if Seb were female. I'm the same age and at the time of starting mtx two years ago I was changing my hrt around to find the best for me. It's impossible to know if fatigue and brain fog is hormonal, auto immune disease, general age and also a big one ...needing a life change such as career. I worked in a psychiatric hospital and I think the emotional exhaustion was a big one. I'd say to Seb experiment with meds , also I take lots of vitamins and minerals and avoid gluten and many other foods...but think about a life change in career. This disease makes us reavaluate our lives and forces us to become more confident in what we need. That's got to be a good thing hasn't it. It's also brought us together as a great community.
Hi Impie. I totally agree with you. I’ve had RA since i was 21. (52 now). I started the menop about 5 yrs ago. I hate the mood awings, hot flushes, dizzy spells, emotional outbursts. My lovely mum died 6 yrs ago. She was fantastic when i first became ill. She was actually a nurse. Very well thought of. Worked so hard. I miss her all the time. She would have advised me about HRT. I’m not on it. I have high blood pressure. I’m already on Losartan. My gp (who’s lovely). Told me HRT can put your pressure up. So i’m a bit frustrated. My partner’s very understanding. He knows when to give me ‘space’. We don’t live together. I’m glad we don’t. Sometimes i just need to be alone. If i can’t sleep. I love getting a cuppa, a naughty treat. Put my earphones in & watch something funny on my tablet. Even if it’s 2am! I’m glad i won’t be waking anyone. I can laugh if it’s late. I live with a funny, chunky little hamster called Sidney. He’s usually in his wheel at that time. He wouldn’t be bothered if i woke him up!!He just stops & stares at me, like i’m a nutter. Pets are great.
During lockdown. I was so glad i had a pet. Some people were panic buying. Imagine being desperate for a goldfish??? Then after lockdown. They were dumping them. Very sad. I’m rambling on again. This forum’s great. I don’t come on here all the time. But when some people’s stories get to me. I have to reply. Pain is awful. It can drive u mad. But as i’ve said. Singing helps me. It just helps me think of something else. X
I agree and relate to everything you've said Vixen and I miss my mum and gran more and more as time goes by. I go to the Newson menopause clinic because it took a while to get my dosage and type of her right, testosterone was a game changer for my joints. It's terrible we have to go private for all of this but for me it was worth it. And yes pets and plants are a life saver xx
Hi Sebastian. I had the same signs that you have whilst on MTX. RA was controlled perfectly but I was finding it harder to work due to the brain fog and headache. After 18 months I discussed it with my consultant who changed the meds to leflunomide and sulphasalazine. These continued to control the RA but with no side effects. It would be well worth discussing a change with your rheumatology team as there are now many more drugs that may help. Good luck.
Talk to your rheumatologist at your next appointment and tell them how you feel, they might drop the dose and you could see some improvement, it's 2 way thing trying to get the right balance.
Definitely questions and comments written down for reference. Majorly stress your unable to function in your role and how it will effect your life if you cant continue to work. (Methotrexate was a no for me it tried to damage my liver) There are so many choices for drugs now it's not acceptable to have such bad side effects impacting your life and it's not just your work life. I'm also a senior nurse but drs are the same as us they have lives outside work and can appreciate the fact that you are majorly struggling. Don't leave the appointment without feeling that they are doing something positive for you. Can I also say well done you for putting up with those symptoms for so long, I would have been on the phone to my nurse specialist many months before😂
Thank you for the kindness, and thanks for all the insights and advice. I am inclined not to say how it really is when it comes to talking to doctors. But I'm feeling more confident thanks to all the amazing support I've received. Best wishes.
Hi your symptoms sound very similar to mine (but I dont have the headaches). Ive been on 20mg mtx for 7months, together with hydroxychloroquine. I was feeling ill/tired the whole time, unable to do my usual activities as I felt so bad. I also had very dry eyes. However my joint symptoms were under control (no swelling etc)
I spoke with the rheumatology nurse and she suggested we see if it was the mtx causing the issues. We agreed I’d skip a week of methotrexate. Its been 2 weeks since my last mtx dose now and I feel quite a lot better. That dreadful continuous ill/dog tired feeling has improved. I think I must have been reacting to the mtx.
Now I need to find out what happens next as want to keep the RA under control. Maybe I need to reduce the mtx dose or try a different dmard?
As others say, highlight this at your next appointment and see what they suggest. Maybe you could adopt a similar approach to me to find out whether its the mtx that is making you feel this way?
I have undifferentiated connective tissue disease with inflammatory arthritis. I was initially put on MTX 15mg. I soon discovered a pattern of exhaustion after injecting. It would last for about 2-3 days, utterly debilitating, so much so it is the only time I seriously pranged the car trying to park!! I soon banned myself from driving on those days. I held out for 8 months. I saw a lecture once by a professor specialising in Lupus - fatigue driven my MTX is recognised. I came off it and felt immediately better. OK I still get fatigue / brain fog days but it is different in nature to the overwhelming fatigue of MTX. As others have said - there are other drugs available now and unless you mention your difficulties they will assume all is rosy. Hope you find some resolution.
That's really helpful. Especially hearing there is a difference between RA induced fatigue and side effects of MTX. It's down to to speak up. Best wishes.
I also had headaches and serious fatigue on MTX. In my case, these escalated over six months to a dramatic spike migraine that landed me in a hospital for three days. You are certainly justified in asking for an alternative. I couldn’t tolerate any of the DMARDs but am doing ok on a biologic (minimal disease activity tho not remission). Everyone is different, and we need to be reasonable but proactive in finding a treatment that works.
I'm sorry you are suffering this. I was put on MTX and had serious fatigues. Wasn't sure if it was the RA or the drug. I told my rheumy who then added Leucoverin (Not sure I'm spelling it correctly) which is used to address the side effects. MTX is a strong drug. In less than a week, my fatigue lifted. Everyone is different, but this worked for me. I hope you are able to resolve this. Good luck.
Hiya, I've had RA since 2014 and started on Hydroxychloroquine. However I had a few bad flare ups so I agreed to go onto Methotrexate as well.
I've been on 10mg Methotrexate/ Metoject since Dec 2018. It's controlling my RA as I've not had a flare since starting it. I stopped the Hydroxychloroquine in 2020 due to gut issues. I take Folic Acid twice a week.
I get brain fog, fatigue, very dry eyes and nausea - it comes and goes and I've learnt to live with it. It is obviously side effects from the MTX...
I have to use eye drops around 5-6 times a day.
I'm quite active at 65, now retired, and still go to the gym twice a week so don't do too bad.
At my next consultation appointment (not arranged yet) I'm going to discuss the fatigue/brain fog/nausea and see if I should come off MTX and try an alternative.
Yes do discuss it with your consultant, don't leave it as long as I have!
It could be either the RA or MTX , but you might ask for thyroid testing. I have a Hashimoto’s hypothyroidism and RA, and I’ve been told autoimmune diseases like to travel in pairs
I also have more energy on the days I walk for 30-60 minutes. Hope you get answers soon.
Hard to know, though somewhere on here you may find info about the inflammatory aspect to RA effects the brain. Suggest you discuss with the RA team your concerns about inability to cope at work due to these symptoms. As others have said maybe change of meds would help?
Do you have a HR dept that would be sympathetic to the situation ? Once you have discussed with RA team you maybe in a better situation to know what HR could offer?
Just a final update. I had my telephone appointment yesterday and stuck to my guns (not in my nature when it comes to doctors). The doctor said he'd need to discuss with a consultant. I've just received a face to face appointment for end of April. Hopefully the begining of something changing. Thanks so much everyone for the brilliant advice and encouragement, I wouldn't have got this result without your help. Seb.
Hi maybe this is a late reply, but I am on methotrexate & find that I get all the symptoms you mention - when I am under stress. Maybe the methotrexate makes us more sensitive & less able to cope. Good luck with your review !
Thanks. Things have moved on a bit since I posted that. The review wasn't helpful. So I asked my GP to intervene and I had another review with a different consultant. He diagnosed neurotoxicity to the MTX as the reason I was feeling so unwell and getting worse.
So I've been switched to Leflunomide. But having had no flare up when I stopped the MTX for 5 weeks I've delayed starting the Lef, to see if my RA symptoms return, and to have a break from taking drugs which is so nice. I feel so much healthier being off MTX.
Its been nearly 4 weeks now. No obvious sign of RA returning yet but its still too soon to tell.
I know it's very unlikely I'm magically cured but I'd rather be certain than take drugs I don't need for the rest of my life.
Anyway sorry for the long explanation!
I wouldn't be surprised in the least if stress made you feel more poorly, whether its the RA or side effects of drugs. There's clearly a connection because stress and trauma can trigger RA in the first place.
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