Hi there folks,
I've been diagnosed with RA about 9 months now, in that time I've gone from 20mg MTX tablets and 5mg folic acid ( which worked well for the condition but gave intermittent nausea ) to 20mg Metoject pen ( which has been reduced from 25mg due to toxicity but provides 85 -90% symptom relief IMO). My query is now I am encountering more lethargy than I have experienced before and am curious as to what measures people use to address this, any advice is welcomed.
More gets into your system via injection so you're actually on a higher dose than when you were on tablets. I had a similar experience and although I reduced from 25mg to 20mg (with rheumy team's blessing) I still feel more tired afterwards than I used to. I find that keeping well-hydrated really helps. I've also worked out that for me it kicks in 24 hours after injecting so I do it early evening so that the worst bit is the following evening/night.
Thanks for taking the time to reply and you make a really good point re the same dosage being higher when injected. I have also tried taking MTX last thing at night and keeping hydrated but I found the fatigue still kicks in several days later. I was basically hoping as it was a side effect that will diminish as the disease becomes better controlled, that's my hope anyway. Thanks again and take care of yourself.
I wouldn't class mine as fatigue (or lethargy tbh) it's more of a fuzzy head - I've seen others describe it as a hangover. Maybe you're dealing with something more than the "usual" side effect? 🤔 I did find mine lasting for several days (but still appearing 24 hours after injecting) when I was on the 25mg which is why I asked to drop back to 20mg and now it's back to lasting a day or so. It seems strange that yours kicks in after several days 😕 Maybe it is more to do with uncontrolled disease rather than the Methotrexate. Nine months isn't long (although I realise that it can feel like an eternity!) and I was still having joint and energy issues at that stage. Hopefully you'll get some help at your next review but meanwhile, it would be a good idea to keep a diary. If you haven't got a review coming up, maybe a call to the nurse helpline is in order?
Yaaas !! I had tablets and changed to injection felt loads better and side effects massively reduced Them had to stop for about five weeks as was antibiotics for tonsillitis Been back in that and hydroxychloroquine for about four weeks now and I feel dreadful !! Soooo tired ! Really struggling and and brain fog !! Omg horrendous I thought it might be just where it was topping up again after so many weeks. Not having anything and before where side effects were bad moving to injection made me feel better but i feel awful and don’t have an appt til December 😩
Curious if you suspect that the Hydroxychloroquine could be causing lethargy? I'm off mtx now, but taking Hydroxy and have a lot of fatigue...probably from Sarcoidosis. Appreciate your insights.
Hmmm if I could take one without the other I could probably tell xx I guess we just have to try and see what’s what x thanks for letting me know about the hydroxychloroquine making you feel tired xx
Good point & I’ve given my example before now. It was when I had a new Consultant. He asked why I was still on tablets (after a year) & suggested I moved on to injections. I went from 20mg oral to 20mg injection. It sent me bandy so it was reduced to 15mg & then up to 17.5mg after the previous 3 months of not doing quite as well.
I'm not sure you can treat MTX lethargy/fatigue, not in a literal way anyhow. Two things instantly occur to me… the longer you're on MTX the less likely you may have either & the more you're controlled you are the less you should feel like you're walking through treacle. That said I’ve been on MTX a long while & have always been more tired the day after. My solution is to just rest, there's little point fighting it, you‘ll only wear yourself out even more. I appreciate it's not something everyone can do, especially if working but, when you can, rest up.
It's something you could ask your Rheumy or nurse next time you're seen. It could be that a slight reduction in dose could make the difference. If that's a suggestion & you're not doing as well they may add another DMARD (double therapy). It could be a case of balancing one against the other to find the best solution for you. I'm not sure if an increase in folic acid would help, if you're only taking the one 5mg? You can but ask.
Have you ever read the Spoon Theory? If not this is it, it may help? cdn.totalcomputersusa.com/b...
Thanks so much for your response, its really good to hear from others who are also battling this condition.
The odd thing is that when first diagnosed and given MTX tablets I had nausea for the 4 days a week but on the other days I could exercise ( cycle or go for walks ) and that helped to manage the fatigue. Now I'm on the injections and the nausea has gone, but as you say I'm stuck in the treacle.
I think I'm being considered for double therapy as you've rightly stated, I will find out on the next rheumy appt, I'll also ask about the folic acid increase although they normally only make one change at a time. Thank you for the spoon theory, after reading it I thought I'll print that off and leave copies lying around the house ( just to gauge other peoples responses of course! but as we know other people can never really walk in our shoes regardless of best their intentions) But I am glad I read it all the same as it confirms what I have come to believe, which is that having been given this diagnoses the best mental outlook going forward is a positive one. Many thanks and God bless 😊.
Spoon theory is good x
Literally puts things I. Perspective although I have my mum a copy and she never read it 😢
Oh and I have MTX and hydroxychloroquine x
If it helped then I’m pleased. I hope your next appointment is also helpful & your current situation is understood. Will you let us know?
Walking though treacle is right and the spoon theory is perfect describing x I need to revisit this as have t really taken time for myself x I don’t rest since my husband had that bleed on his brain x nd moving house x I need to take stock and actually do what I tell everyone else to do ! That’s why I love this group x someone else is always feeling how you do and their questions hold your answers xx sorry for butting in but you guys have massively helped me to remember about myself xx
You have a lot going on, & your husband's recovery as well, it's little wonder you feel as you do, it's stressful & worrying. I can relate to that, I really can. We're trying to manage ourselves & then we're thrown a curveball, something completely out of our control.
I'm pleased my reply helped, & yes, we do need to to take time for ourself but it's not always as easy as the saying words. If you have need do ask here, we've often more in common than the condition. Take care.
Sadly I just had to come off it. Other drugs are available. I’d shy away from a drug to treat the side effects of a drug…if you see what o mean…even if there were one.
Sorry to hear that Madmusiclover, I know MTX isn't for everyone and I'm well aware of the negative reactions it can have, but as it's one of the go-to treatments it's the first thing they dish out. Maybe you might be eligible for one of the biosimilars that they are starting to issue now, I don't know if that's applicable to you. All the best though.
I’m fine lovely! Worked my way through them over 5 years. Now on a JAK.
I suggest you call it fatigue, not lethargy! The former is induced by the drugs or indeed the RA itself, especially when flaring. In my book the word lethargy implies you have a role in its cause and that's just not true so don't let others tell you differently! Be kind to yourself.
Sorry I can't offer MTX advice as I'm not on it (it made me ill!).
Thank you for pointing that out and you absolutely correct, it is a symptom of the meds or the condition itself. I tend to take it for granted and think the worse aspect is pain, so reduced pain equates to all is well, when that may not actually be the entire case. Thanks for taking the time to reply anyway I've taken something away from all the responses today and that's been a big help. Good luck.
Hi, I inject 25mg MTX and am totally fatigued most of the time, so I don't have any answers I'm afraid. Hopefully someone can give us both some tips!!
When I started on 25mg my legs burst into an odd rash, which itched like mad at nighttime, eventually got it checked and the reduced me to 20mg. It's odd how it works though admittedly, as I don't recall having as much fatigue on the higher dose. RA is such a rotten condition, which minimises other healthy options like vitamin and mineral supplementation leaving us heavily dependent on meds to cure-all when often they work but cause other issues at the same time. Ironically exercise was the one thing that gave me a bit of a pick me up before I became too tired to do it 😁 I agree with you though, and any advice would be a great help right now.
I don’t have the answers, but am in a similar position and hoping to find a solution. I’m in methotrexate and hydroxychloroquine, and last week the rheumy nurse at clinic added sulphasalazine into the mix..... I’m a week in today and actually feeling worse ☹️
I hope that it works for you; adding Sulfasalazine to Methotrexate and Hydroxychloroquine last year was the missing piece of the puzzle for me. 🤞
Thanks for the comment and sorry to hear that you are feeling that way. They are trying to get you regulated I imagine and I know what that means another couple of months wait until the new meds kicks in and takes effect. That's the worst part waiting like that, definitely take it easy on yourself and call your GP or rheumy team if it gets any worse.
I have to admit to being totally taken by surprise by the complete drain in energy after taking the methrojet injection .My RA was in remission for 7 years so when it became active again I asked not to be on the tablets which made me nauseous and instead opted to start the injections just over a month ago .... I was pretty sparko for 36 hours after the first one kicked in ... and its not been much better although taking it early evening has meant I only lose one day of work a week (but I am catching up on Netflix!)
I have had to stop taking it this week due to adverse liver functions but I'm also due to catch up with a nutritionist for suggestions to counter the lethargy.
Wishing you success on managing it !
I think its helpful to recognise the pattern between having the drug and when the lethargy kicks in !
Thank you for the comment Stormwarrior, sorry to hear that you are no longer in remission that must have been a real disappointment for you so thanks for sharing that. I won't ask why it came back as there seems no logic to RA / autoimmune conditions initiating but I imaging the stress of the Covid situation could not have helped. I think you made a good point about noting when the fatigue kicks in, I normally take it late at night with a load of water and go to sleep to miss any immediate effects. I might change that to better not what symptoms pop up where. I'm of it too as it happens as I am missing a week on either side of the flu jab as advised.
I tried both the tablets and the injections. Tablets were the worse for me and intolerable. The injections were a bit better but still... I felt that I had no life, Mtx stole chunks of each week from me and that eventually left me depressed, this happened with both the tablets and the injections and there was a lapse of a couple of years between the two. I wouldn't go back to Mtx and fortunately have found a biologic that seems to do the job of giving me a life, despite the allergic reaction and still having minor flares occasionally.It is my body and my choice, if something doesn't work or makes me ill, mentally or physically, lets try something else.
Thanks for the comments you've summed up my situation very well, unfortunately as I am relatively newly diagnosed I get the impression there is a range of meds I have to go through before I can try biologics. My DAS scores came down quite a bit in a short space of time, which I reckon is a good thing but on the flip side, I imagine the lower your score the more likely it is that you are given sulfasalazine, hydroxychloroquine treatments first. I am glad things have moved forward for you and hope they continue to.
Morning Buugs, iam also on the 20mg Mtx injection and have been since the end of last year. I still find it hard to get myself motivated. I ran and circuit trained every day for years before RA showed up. Now i have to actively make my self get out and run. Dont circuit train anymore because of pain in wrists and shoulders but do try to run a least 3 times weekly but do find it hard to motivate. I find Tuesday's are the hardest day for me, like mentioned above the day after taking the Mtx is difficult. Like today am thinking shall i run or should i go out on my bike, really cannot be bothered doing either but i will do one or the other. Just something i think we have to work around having RA. Am lucky that my RA pain is under control now, when i was flaring i done nothing for months. I have to stay active makes me feel like i have a little control back.
Hi Phil, thanks for the post. Wow, it's unbelievable it's like running into so many people who sound like me, on the one hand, it's good to find the company on the other I would not wish this condition on anyone. I used to work out several days a week before RA, free weights, and cycling for cardio. The very first RA flare was in my shoulders which I thought was a weights injury ( but couldn't figure how I had injured both at once). Since then I've cut back to minimal non-load-bearing exercises ( as I can't imagine a joint injury and RA, it is too depressing). I agree the motivational side is really important I know if I don't get up and do some exercise I really am going to feel worse but gradually the enthusiasm is going. I'm getting this wrist pain now and both thumb joints are achy ( which are both relatively new things ) Are you of the mind that you have adjusted to the 20mg dosage and that has helped manage your condition or do you think your dietary changes have had an effect, I would be interested to know your thoughts on this?
Hi Buugs, you sound like the path i've been on. It does knock you for six, i thought i had gout. My feet were always aching after mountain racing but as i say thought it was gout and almost 50 then, thought its my age too.I was eating pain killers just to finish the last couple.
Anyways after going doctors and having bloods done and x-ray's they found i had RA and had a broken foot from racing which had healed its self.
I had the Mtx tablets at first for a year or so but i was in a terrible way with the flares and tiredness and asked if i could try the injection.
Since then i havent flared really, still get localised pain wrists shoulder etc. But am able to carry on now almost like normal.
I changed my diet, just basic really. Cut out tomatoes and stopped eating red meats. Drink lots of water and take suppliments. Papaya extract and bromine pineapple extract B12, omega 3 and Glucosamine sulphate for my joints.
I am hoping to get back to racing shortly and get back up the mountains but am still a bit sore and achy. But that's my long term goal.
Mtx does work if its right for you and tiredness does ease as time goes by. Think its just a case of us trying to work with the RA and not to expect to much, which i find hard for me.
Hope it works out for you Buug's
I struggled with horrible brain fog and tiredness. They lowered my Mxt to 17.5 and added in hydroxychloroquin. After about 6 weeks on hydroxy I felt much more energetic, but it did take time for the hydroxy to take effect. Also I found I have more energy if I try to clean up my diet. It seems to support my body in dealing with the Mxt. I also wondered if the Mxt was effecting my blood sugar levels, making them on the low side so I try to keep my levels steady without too many spikes or lows. It definitely helps.
Hi ya Cakenomore, thanks for your comment and advice. I think it's been suggested that I try hydroxychloroquine next if MTX by itself fails to manage things. Don't want to speak too soon but brain fog is a symptom I haven't had yet ( so you have my sympathies there). I think diet is the one area I may now have to look into, as expecting the medications to do all the heavy lifting and still eating inflammatory foods maybe not be for the best.
MTX causing tiredness must be fairly unusual because I've rarely heard of that clearly happening to anyone. It's likely that it has nothing to do with MTX. Keep in mind that lots of misc things can cause tiredness such as lack of sleep, some other illness like a cold etc. Also in case no one suggested it, assuming joint pain does not prevent it, get lots of exercise. Perhaps being too afraid of MTX can scare you enough to produce the tiredness. In any case I suggest you talk to your healthcare team about it.
I have change my information after reading a bunch of people (here) experience fatigue after MTX. I guess I'm very lucky that I never had fatigue associated w MTX.
But keep in mind that the illness that we have been diagnosed with is not very precise. Even specialists know very little about the various Rheumy conditions, so we it would be suprising for all of us to respond the same to various drugs.
In any case best of luck!
That's a really good point you have made about RA being a not very precise condition. On the one hand, you have those suffering from it who have varying physiologies, etc when combined with the ranges of treatment of options available to medical practitioners in differing locations, it's easy to see how quite a diverse set of responses to treatment emerge
thanks for your comment though and good luck to you too.
Hello Buugs
Just read your query. and I agree with Boxerlady about the effects of Methotrexate especially how the dosage by metoject can be reduced from the tablet dose, with the same effect. Otherwise, you may well be overdosing. This happened to me.
I felt as though I had been hit over the head with a mallet when I was having the same metoject dose as I had with the tablets. I did read somewhere that with the tablet form only about 40% was absorbed. Once my dose was reduced I felt much better.
Hello Bienassis, thank you for your comment I think you and Boxerlady both have a good point in that the change from tablet to pen may well be something I may need to look into. From what I have briefly read so far the pen increases the strength or availability of MTX which may be a factor ( I don't claim to know the science of this I just use Google like everyone I guess). I have lowered my dosage from the original 25mg injection I was taking but I am getting the impression my current dosage is not managing the condition sufficiently so it may need a bit of a tweak. I'm really grateful for all the advice though as you can always learn from the wisdom of the crowd. Best Wishes.
Hello Buugs
Yes, indeed, a lot can be learned from other sufferers' experiences, as I've discovered .
I was told by one of my specialist rheumatology nurses that the injection method pushes more into the system than the oral route.
You are taking quite a high dose anyway so you certainly wouldn't want it to be unnecessarily high. If the MTX is not "holding" the disease you may need to take something else in combination with it. In which case the MTX could probably be reduced.
Good luck with that; it's all a question of trial and error with this disease - just finding a combination that suits your system. We all react differently.
bienassis
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