Hi all.I had an annual (18 months in truth) review with rheumatology yesterday.
I wanted to discuss experiencing constant brain fog and chronic fatigue and whether this was a side effect of MTX. I also have ongoing low level pain, especially in my knees and a few other places.
I wanted to know if changing to another medication might help with these symptoms. I'm finding working particularly hard due to brain fog, difficulty with concentration and memory and chronic fatigue.
The rheumatologist examined me and looked at my latest blood tests. CRP was below 1. I've no swelling or heat in my joints so he said no signs of active disease. He could hear my knee joints when moving them.
Because he thinks there is no active disease, he said the MTX is working and didn't want to change it. He didn't think the brain fog and fatigue was due to the MTX.
He thinks the knee pain is possibly osteoarthritis and wants me to have an xray.
And he thinks the brain fog and fatigue is fibromyalgia. Fibromyalgia was suggested t my last review but without any physical exam and I thought it just a convenient way of explaining away symptoms without proper investigation.
This rheumatologist was much more thorough. I don't know what to think about the fibro diagnosis. The idea of continuing to feel this unwell and tired and struggling at work is miserable. Hence I had hoped it was the MTX and a change of meds would fix it. How naive.
I wondered if anyone had any advice or thoughts about the fibro diagnosis, or advice on coping and living with it, if that is what I have to do.
I guess I should add I frequently dont sleep well and suffer from depression and severe anxiety, which he said was relevant to the fibro diagnosis.
Thanks.
Seb
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I’m no medic but metho made me feel awful. You could try stopping it for a few days to see if you can identify cause and effect. But please that is not medical advice but is what I would (did) do. It’s your body.
I think if you are not sleeping well and have severe anxiety and depression you need to address these easier said than done have you try some hypothesis or meditation apps I started using these and found can reduce anxiety aid sleeping do you take meds for depression? afraid rheumatology if there are signs of methotrexate dismiss other issues so you need to try and address these.
Thanks. I agree totally. It is possible the brain fog and fatigue are being caused by my mental health issues and not tye MTX or fibromyalgia.I'm not currently taking meds for depression but have in the past been on anti depressants and other drugs to help control anxiety. I came off the drugs after years of taking them because I felt increasingly disconnected from reality, and my family.
I have repeatedly accessed therapy, mostly self funded, but couldnt afford it long term, which apparently is what is needed. Therapy through the NHS is dire where I live, especially if it's for more complex and long standing mental health problems. A few years ago I was on a waiting list for 18 months with the NHS, and then told the service couldn't help me because I needed more specialist help.
I've gone back to the NHS recently asking for help again and am on another waiting list....
What a lousy diagnosis. A lot of people think that fibromyalgia is a 'catch all' diagnosis when no other reason is found for our distress. Unfortunately, I have the same symptoms as you plus a few others and my diagnosis the same. I take duloxetine 30mg in the morning and 60mg in the evening and it seems to help me.
Thanks. The rheumatologist didn't mention any treatment, drugs or otherwise for his diagnosis of fibromyalgia. He said he'd put links to info in the letter following my appointment. So it seems its for me to go back to my GP if I want help with the fibro diagnosis. It just feels like another battle.
Well I have to say that out of all the very many drugs I’ve had over the past 34 years Methotrexate was the one that gave me brain fog, fatigue, woolly thinking, nausea and just general grottiness for four days out of seven at least. I put up with it for four whole years as there was very little else on offer but eventually refused to have anything more to do with it - tablets or injections.
I have never felt like that before or since and you might want to stop it for a while to see if your miseries subside. Of course you may risk a bit of a flare but if your brain starts functioning properly again there’s no contest! Like madmusiclover says it’s your body and it’s a two-way conversation with your rheumatologist as to what you dose it up with. Best of luck and hope you get sorted soon.
Thanks. I'm definitely giving a break from MTX consideration. I got the sense from the rheumatologist that if the MTX was working on the RA, any side effects were secondary and basically to be tolerated. Their priority was managing disease. I understand that. But as there are other drugs that work without side effects why can't I be offered these. Perhaps they don't want to mess with something that from their perspective is working.
Methotrexate is well known for causing depression etc. It made me feel absolutely awful. I simply couldn't function. If it were me I would push to have a change.
Stopping methotrexate was a good decision for me, much resisted by the rheumatologist. I had brain fog, my family thought I had early onset dementia. I was struggling to work. It also had considerable effects on my gut - large oral ulcers, nausea, morning sickness, and intestinal hurry (4-5 times a day despite taking codeine).
Because of the enormous ulcers, my dentist wrote to the rheumatologist saying he strongly recommended changing to some other DMARD. (My dentist was the regional dental tutor at the time, so was listened to.) I had previously had allergic reactions to sulphasalazine and hydroxychloroquine, and raised BP on leflunomide.
I changed to azathioprine. It was like a blanket was lifted from my mind, and my gut gradually healed. My daughter-in-law said tactfully that it was 'as if I had regained my previous self twenty years previously'. I was able to write and give talks again and function intellectually again and continue to work.
It is worth a trial of stopping methotrexate for three months at the very least. If your symptoms persist by the end of that time, it isn't that!
Your experience sounds worse than mine. I'm fortunate not to be having gut problems. But the blanket analogy is perfect, it's exactly how I feel. And interesting you say rheumatology resisted your request to change drugs. That's my experience too.Why, what is going on. If there are other drugs that work with less side effects why not prescribe them?
Unfortunately, there are still many rheumatologists who won’t budge from their ingrained prescribing and the patient’s view becomes secondary to saving money and doing the same thing……I have worked with many different doctors as a senior practice sister and believe me there are still the old timers around though fewer of them I’m glad to say.
Mtx is cheap, effective and works for many but when it doesn’t it is a living nightmare for those of us who can’t tolerate it. Like we’ve said, it’s your body and you have a right to request a different drug. The consultants are the experts but they don’t live with the pain and brain fog! Do what you feel is best for you within reason and all the best for a good outcome.
Interesting, you feel more pain when tired or you are depressed. This is my opinion, but I have found it to be so. Speak with GP re your sleep, they will be able to help, I take Amitripyline it helps with sleep, relaxation, side effects it an anti depressive. Do you exercise? I walk the dog everyday it helps.
Thanks. I do wonder if my mental health is causing at least some of the symptoms I experience. I tried amitrip once, I had an unpleasant reaction so couldn't take it, I've had similar with some antidepressants.I'm trying to get therapy again, but if this fails I will have to consider going back on antidepressants, but I'd rather deal with whatever is the underlying problem.
I do exercise, walking mainly. I used to be very physically active in extreme sports, but the RA prevent me from that now which hasn't helped my mood.
Not one to preach but push yourself to exercise even if you only make 15 minutes, it is a mood booster and it makes strong muscle which we must strive for. I now exercise with weights. RA and fibromyalgia are difficult beasts. I would still consider talking to GP with regards to the anti depressants they are a useful tool.
Totally agree with others who replied. Very sorry to hear that you've received what sounds like a somewhat dismissive diagnosis of fibromyalgia with no plan for treatment or relief. MTX definitely can cause those symptoms, as can depression, anxiety and insomnia.
From personal experience, all I can say is that I also experience fatigue, brain fog and nausea as MTX side effects and it negatively affects my cognitive function as well. It was worse when I first started MTX, at which point I was prescribed the tablets, but after taking 25mg injections for two years it still makes work and daily life harder. I'm even more sure it's the MTX since having covid-19 a few months ago because I had to stop all DMARDs except HCQ, and despite being unwell my head felt significantly clearer for those few weeks. It has a short half-life so is out of your system pretty quickly once you stop taking it. When I re-started the MTX, the side effects were worse for a couple of weeks until they settled back down to usual levels.
Are you already prescribed other DMARDs? As you probably know there are lots of alternatives out there that perhaps could be options for you, or even if the MTX were continued alongside at a lower dose, that might reduce side effects. I'm about to start a biologic and one of my aims is to substantially reduce my MTX dose when that (hopefully) kicks in, because of the side effects. I really hope you find a way forward that helps, medication side effects can be absolutely brutal.
Thanks for your thoughts. The more I think about it the more frustrated I am. I don't have the pain symptoms for fibro so the diagnosis must be wrong. Having read about fibro the doctor didnt follow any diagnostic process in order to come to that diagnosis. Had he, fibro would have been ruled out.
From what I've read It's more like chronic fatigue/ ME which would be equally disastrous.
I've decided to stop the MTX for a bit and see what happens. I'd rather it was the MTX than a syndrome that is impossible to treat. I'm not on any other DMARD.
If it isn't the MTX at least I'll know for certain.
Best wishes. I hope your change in meds improves things. Seb.
That is intensely frustrating. I don't know what your rheumatology team is like, but in your shoes I think I'd be phoning or emailing to request a review appointment to express concern about the fibromyalgia diagnosis and discuss whether other DMARDs could be considered. It's not good that DMARD side effects has been totally dismissed as a possibility and alternatives not even discussed with you. Lots of us take sulfasalazine, hydroxychloroquine, leflunomide... they're not right for everyone of course like any medication but I'm taking two of those with no discernable side effects whatsoever. I don't understand why you've not even been given the chance to try something else and instead are having to contemplate going without medication altogether which could cause a flare. Is there any chance of getting a second opinion?
I don't know what to do about a second opinion. It's my second day of missing my usual MTX dose. If I see a dramatic improvement I'll get in touch with rheumatology. I don't know how long MTX stays in your system, but hopefully the RA won't return for long enough.
It is a risky strategy but at least I'll know one-way or other and hopefully fairly quickly.
Maybe I'll contact my GP about the fibromyalgia diagnosis and ask them for a second opinion. It's not a rheumatological illness as far as I can tell so a GP should be as competent as a rheumatologist when diagnosing it. You'd think!!
interestingly I was just coming on here to ask about side effects of methotrexate, salazophine and steroids mixture. I’ve been told also that I have fibromyalgia- but I have specific pain in my leg, when my knees hurt.
I’m exhausted. Especially the day after my
Methotrexate injection. Does anyone else find this? And I’ve been using this medication since last August. Don’t get me wrong, it’s no longer every day - but it’s still half the week, even after all this time.
Don’t get me wrong, there is other stuff in my life that could be causing me to feel depressed, anxious and tired. But I only started feeling this way after the methotrexate started. And the exhaustion was after not so much before- and I had significantly swollen joints at the point too and was as happy as.
I’m really not sure that it’s worth this and I’m going to speak to rheumatologist soon.
Well your situation sounds very similar to my own. The pain i experience is in my knees, which rheumatology suspect is osteoarthritis. So I dont have the scope of pain associated with fibromyalgia, which I why i think the diagnosis is wrong.
Like you after feeling very unwell after starting MTX it improved, after I had increased the folic acid. But I take the tablets, never been offered injections.
And like you a more general malaise has come on slowly, which for me is brain fog and fatigue. At times these are bad enough to make me feel i can't carry on working and its effecting my quality of life. But my rheumatologist doesn't seem to appreciate this.
So I've stopped the MTX and am waiting to see if this helps. I accept it could be caused by something else. And I do wonder if its the depression and relentless anxiety attacks. But maybe the mtx has made that worse...
It's Important to say lots of people are fine on MTX and have been on it for years.
You definitely should discuss it with your rheumatologist. I hope you have more success in getting them to take it seriously than i have.
I have Ra and when some of my symptoms were not typical RA saw a private consultant and he said I had the double whammy of both. Worth a trip to GP my RA consultant does not do anything about fibro says not his dept but my GP helped a lot and walked me thro it and confirmed diagnosis and treatment ideas.
Thanks. I'll take your advice. I do wonder why rheumatology haven't referred me back to my GP about the fibro. They didnt say any such thing to me. So I have a diagnosis with no follow up.....Increasingly I am learning you have to be a strong self advocate. I'm just not very good at it!
Thanks for your thoughts and advice. I'll arrange to speak to a GP I think. I've had no contact from my surgery since the diagnosis, or advice from the rheumatologist about managing the fibromyalgia. So even if the diagnosis is correct I've just been left to accept and deal with it on my own. It makes me question the point of the diagnosis if there's no follow up.
Theres usually no follow up from rumatologist on the fibromyalgia and diagnosis same again gp wont contact because of this diagnosis
your usually just left and left to gp and rumatologist discharges you from fibromyalgia
Bring to attention of gp and gp will look at notes
and hopefully rumatologist has told your gp
rumatologist department bad for letters like this to yourself if the case
contact rumatologist secretary and ask for letter of this diagnosis and keep it for future reference
And ask gp about the diagnosis if gp thinks for 2nd opinion
Gp s give more diagnosis than rumatologist on fibromyalgia
Treatment wise
1st line Usually before meds
Self help
Cbt
Pain courses (good )
Wellbeing courses (good)
Tips
Exercises from physio
Phycologist
Sleep sorted (possible meds )
If fails
2nd line
Medication
There's lots and lots of medication
Can take years to find right treatment for fibromyalgia and balance and dose important for lots on 2nd line lots combination of meds and low dose ,helps lot Then not to be interfered with if helps a good gp helps and important to get on and work with gp as long term as no cure
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Diagnosis confirmed a year after onset of symptoms 
fibromyalgia?
Please can someone help me or give me advice I am desperate.
Still no diagnosis 
