Methotrexate funk

Hello everybody.  I am new here.  I was diagnosed with RA a couple of years ago.  I can deal with the pain of RA pain.  It is the extreme fatigue that I get periodically.  I used to have episodes before I was diagnosed.  Now almost every time I inject methotrexate I am sick and fatigued the next day or two.  The fatigue is terrible.  I either sleep or sit in my recliner until I recover.  Has anybody experienced this?  Is there an alternative to methotrexate?  I am also on Remicade.  I have had 4 infusion so far.

30 Replies

oldestnewest
  • Morning Trimiec

    This seems to be a common theme with mtx users.My personal experience is that I used to inject on a Thursday morning and come Saturday I was sick,tired not just tired but dog tired couldn't drag myself out of bed and my joints would ache terribly.This often continued into Sunday as well.My weekends were a total washout .I asked My GP about this and he explained that it was probably due to the fact that the drug is at the height of its toxicity at 48 hours .Although when I asked my rheumy  he thought I was making it up.

    I cannot comment on temicade as I have never used it and I have been stopped taking mtx jabs as it had other effects on me.Speak to your they you or rheumatoid nurse if you have one and explain what's happening and they may suggest an alternative drug for you if this is not suitable.

    It can be quite a lottery getting meds sorted often trial and error until you find one or a combination of drugs to suit you,we are all different.What works for one doesn't help others at all.I came off mtx and am now on steroids but other folks on here really get on well with mtx.

    What you are experiencing is quite a common reaction.I found that I just had to give in to it for a day and just rest.If I really pushed myself on the Saturday it would get me on the Sunday and I had to concede to it then but it got me one way or the other in the end.

    Hooefully,someone else on here has alternative suggestions on how they deal with this but I just had to rest.

    Best wishes.

    Crusee

    XX

  • Oh how I understand! I couldn't stay on methotrexate but even on Humira I still had fatigue. I agree that for the most part I can bear the pain, but the fatigue is awful. For example, I have 2 of my grandchildren here this weekend (teenagers) and I had to lie down yesterday afternoon and go to bed early. It's frustrating and ridiculous! I hope you find an answer, but if you do pleeeease let me know.

  • I promise that I will.  be well, and thank you for the response.

  • Hi Tniemiec,

    I recognize your story. Unfortunately it is part of the disease. I experience it too, the extreme fatigue, personally I find it the most difficult part of this disease because it give you so many limitations.  The only thing i do is sleep a lot and wait till the fatigue gets less.

    It is hard to live with it, but I hope you can deal with it.

    Wish you all rpthe best.

    Bas

  • Hi. As the others have said, fatigue is part of the disease. I don't get it as much as I used to but when it happens, there's nothing you can do. Be gentle with yourself! However, I gave up MTX after years of either different doses plus alternating oral and injection.  I hated the stuff. I couldn't bear feeling awful for two days a week. Eventually, even the thought of taking the tablets made me feel sick. So, I stopped. I'm on Rituximab now and that works for me. I had to try a few meds though, and maybe you should too. Hope you get it sorted out soon. 

  • You really need to call your rheumy nurse ...there's lots of other drugs you could try ...fatigue goes hand in hand with RA ...I was diagnosed with CFS^ME in 2008 ..in 2011 I was diagnosed with RA ...in 2014 I was diagnosed with Hypothyroidism ...and now I've just been diagnosed with Fibromyalgia ...now that's fatigue! ...In just over 6 years I  went from having a great job and a great life and lifestyle to having nothing but fatigue and constant pain ...good luck and gentle hugs ..x

  • Hiya Tniemiec & welcome. Fatigue can be difficult to deal with & a common problem for us. Are you well contolled at the moment & still have fatigue do you know or is it something that been worse since starting your current meds? Sometimes it's due to not being well controlled but it can be due to management, diet, excercise (or lack of), any number of things. Maybe having a look at this & the additional links at the bottom of the page would be helpful, you may recognise something which you relate to nras.org.uk/news/is-your-ch...

    I've been taking MTX 7 years. I just have less appetite & I'm a little more tired the day after I inject which I've accepted for a good while but an SpR I saw the other day didn't think that was acceptable, particularly as I take 5mg folic acid every day except MTX day & keep well hydrated. He started me on an additional DMARD & suggested if I respond well that my MTX dose is reduced at my next appointment in 3 months time, I'm currently on 17.5mg but he's suggesting it's reduced to 15mg. Until recently I've been taking 20mg which worked on the disease but left me feeling iffy for 4 days, now that wasn't acceptable & so the dose was reduced but of course that left me less well controlled & I started with inflammation & pain in my feet, I was more tired too, I can't say fatigued but a marked change from my norm. One thing I do though is give in if I'm tired, I've learnt over the years not to try to push through & even if I don't recognise it my h does & packs me off to lie down, if I fall asleep then I accept that's my body telling me that it needs to rest.

    Have you spoken to your Rheumy or nurse about how you feel & have you been given any help or advice on how to tackle both your fatigue & side effects of MTX? I think that's your first step, if they're unaware of how you feel then do talk to them about it. Many do well on MTX, of course a site such as this isn't a good representation of how many because the nature of them is of people struggling & seeking help but if the side effects outweigh the benefits, the dose is correct & you're repleneshing enough lost folic acid then it should be considered if it's suitable for you. I'm not on infliximab but being here I realise MTX is a DMARD often used alongside it to enable it to work better. I don't know if any other of the DMARDs have the same effect but it's something your Rheumy team will be able to answer.

    I hope some of this helps & enjoy being here with us. 

  • This disease has really thrown me for a loop.  My Rheumy told me that my Sed rate was in an acceptable range and did no understand why or how I could be having so much trouble with joint pain and fatigue.  I know she thought I was a being a baby, but told me she would have me take a different type of blood test to back up her theory.  She sent me for a Vectra VA blood test.  When the results came back she apologized.  It seems that even though my Sed rates are acceptable, the Vectra test shows that I am in the high range.  Meaning that the disease is not yet under control.

    I will try the lemon water in the morning.  I will also push myself to exercise. That is the one thing that I do not do.  At age 62 exercise is not one of my favorite things.  Especially after working all day.  When I get home,I am pretty much toast.  Exercise is the only thing I don't do that I should.  So I will get started.  

    Than you so much for the advice,

  • I'm similar to you in that my inflammatory markers don't represent my actual inflammation accurately so I'm pleased your Rheumy has access to the Vectra test. I take it you're not in the UK, it's not something that's been taken up here but we have had our US members discussing it. Another difficulty I find is having gone from the DAS 44 which includes all the joints affected being performed abroad to here in the UK where it's the DAS 28, fine except when the feet are your most problematic joints. Fortunately the SpR I saw took this into account, agreed that it's not acceptable the feet aren't included & chose to not take my DAS because he appreciated I wouldn't make the correct score on the joints included to warrant another DMARD being added. A quick examination of all my toes provided enough information to confirm disease activity in them.

    Exercise certainly helps, I omitted that, but again don't push through pain. Even basic stuff like exercising your feet & legs on the most basic of pedal type exerciser whilst sitting helps, before you know it you've done 50 revolutions. Keep posting, I'm sure it will help being in touch with others who appreciate how things can be.

  • Hi Tniemiec, are you in the States? I don't think we have access to Vectra DA tests here in the UK. It sounds as if it might be a useful addition to our standard teats.

  • Yes, I am in the States.  I had never heard of it until my doctor prescribed it.  I had to google it.  

  • It looks like an interesting collection of tests, but is only available in the USA, and costs about $1000!

    'The MBDA score is based on the following 12 bio- markers: vascular cell adhesion molecule 1, epidermal growth factor, vascular endothelial growth factor, interleukin 6, TNF receptor I, matrix metalloproteinases 1 and 3, bone glycoprotein 39 (YKL-40), leptin, resistin, serum amyloid A and CRP.'

  • This is a useful summary of current blood tests

    healthcentral.com/rheumatoi...

  • Exercise is tough.  Try by talking a walk during lunch break.  While watching TV  at night set an alarm for every 15 minutes and just get up and walk around.  Good luck 

  • This may not exactly answer your question but I suggest trying to hang in there with the methotrexate.  I am on 15mg methotrexate per week, first orally and then because of side effects, by infusion.  The infusion side effects were less but still present.  Perhaps my experience is totally anecdotal, but upon the advice of a friend, I began drinking freshly squeezed lemon juice every morning in a half glass of warm water, and waiting 30 minutes before eating breakfast.  This acts as a detoxifier but also gives you a good boost of vit. C.  I haven't felt so good in years and I continue with the methotrexate infusion without any side effects.

  • I get the same thing, not sure what the answer is.

  • Hello! I was diagnosed 2 years ago and I started with MTX and Meloxicam. I took MTX for about two months and then I just couldn't deal with it anymore because of the side effects. I stopped on my own and told the doctor I'm done with it. I started taking Enbrel only and been on Enbrel for about 1.5 years and it night and day from when I was taking MTX. My fatigue is minimum and for example I did 7 hour long classes at the gym this past week and some included weight training and no fatigue hardly. Exercising definitely helps me with fatigue. My doctor said we would try different meds until we found one that worked for me. Pain is really obsolete for me now.  Maybe you should ask about taking an alternative and be done with MTX. Hope you get to feeling better. We are all in the same boat and know how you feel. :-) 

  • After reading some of the posts I find them interesting on how everyone is so different when it comes to meds for R/A.  I was on Methotrexate for over 20 years utilizing both pill and injection.  It never made me tired or sick at all.  Actually, prior to beginning treatment with Methotrexate I was fatigued all the time, but that is a symptom of R/A.  Once the meds kick in the tiredness should go away, but still it is part of the disease.  Maybe try a different med until you find the one for you.  Blessings!

  • Hi I'm on mtx sulfazalasine and hydrox and this week has been a big struggle due to severe fatigue and burning ankles and feet I've also got swollen hands and my left one is black and blue, I've got RA and oa but it's the fatigue that I'm struggling with the most, I've phoned the Rheumy secretary and am waiting for an appointment because I'm waiting to start Biologics , but it's like walking through quick sand and I've not being able to get up before 10am

  • Hi there, I was diagnosed with RA in 1986 and was given a variety of anti inflammatory pills since then I've had two hip replacements and need new knees, it's in my hands wrists elbows shoulders and back but I refused steroids and methotrexate settling for Arcoxsia which is also immune suppressant, seems to be ok, fatigue levels not to bad no sickness and pain is manageable,might be worth a look, just want to say the very best to all of you keep fighting take care, Mixedmoss.

  • Hiya Mixedmoss, I'm not sure who's informed you Arcoxia (etoricoxib) is an immune suppressant, maybe you'd better check. Like you I've gone through 5 or 6 different anti inflammatories but the one which seems to work best for me is Arcoxia. I've been taking it for about 4 years & it's always been prescribed for me as an NSAID, specifically a COX-2 enzyme cyclooxygenase-2 specific inhibitor which works on pain & inflammation. Just don't want you to think you're treating the disease itself.

  • Hi there thanks for the info, it was the anesthetist (hope that's right) at the hospital who told me Arcoxia works on the immune system but however it works it seems ok best thing I find is keeping positive, still drive a truck all be it part time and my wife myself have lived on our narrow boat for the past 11 years not giving that up ha ha best wishes to you cheers mixed moss.

  • Aargh, all this really takes me back. It's so frustrating and upsetting to feel poisoned by meds or just made to feel worse - as if the RA isn't enough by itself! My experience of MTX was unpleasant too (brain fog mainly and a burning sensation)  and it wasn't anything like as good as the biologic I'm on now. I also have a post-injection reaction after Enbrel which lasts a couple of days - extreme fatigue and often a headache) but having worked my way through most of the DMARDs,  and having had a period off biologics. I now just count my blessings that Enbrel still works for me - that anything works. I agree that often it's the RA flaring that produces the side effects we understandably blame on the drugs. 

  • When I was initially diagnosed with RA my worst system was the fatigue.    Once I got on HDQ (plaquenil) I felt considerably better and then added the MTX.   Following the day after of MTX,  I definetely was not quite right and actually chose not to drive on those days and made it my day to relax.    I'm totally fine now and this is no longer a problem  and would say it took me approx. 6 - 8 months to get to that point, however I'm happy that I pursued it as I feel more like more old self now than ever.

    I understand it can be different for everyone on how there system reacts to meds. 

    Good Luck!

  • I was exactly the same Tniemiec. my rheumy advised me to take it over two consecutive days. maybe if you asked yours you could too.

  • Unfortunately that's not possible with the pens we're prescribed nowadays, could have done it with the syringes but the dose is released by pressing a button, spring loaded so a full dose now. Good idea for anyone struggling with side effects if increasing the days of folic acid hasn't helped to ask if they could do that if on tablets though. When I was on tablets I used to take my dose through the day with each meal, that worked for me, I hope taking yours over the 2 days has helped you.

  • I have been off mtx for three weeks having been taking it for well over a year. Since then my exhaustion has reduced, my persistent cough is disappearing and the awful 'shooting pains' I had going through my hands and fingers have gone completely. I assumed they were the RA now I am not so sure. I had one virus after another and felt like I was wading through treacle. Not good. Now I have been advised by my rhemy nurse to consider other DMARD's.

    Many people have had brilliant results from mtx, others (like me) have suffered dreadfully with it. Unfortunately the only way to tell which group you fit into is to give it a try. I am told that the side effects are usually worse in the first few weeks and months and then for most people things improve. If after that time you are still having problems it might be worth a re-think. There are alternatives but in my opinion you need to give mtx a while longer before deciding it's not right for you.

    Good luck xx

  • To avoid feeling sick, make sure you take 5 mg of folic acid in tablet form, 12 hours prior to your methotrexate. Take the actual methotrexate just before bedtime. In the first few months, I used to feel very unwell the next day, so I started taking a couple of Panadols with the methotrexate. This seemed to help. After a few months I no longer needed the Panadol please persevere because it will help enormously. I refused to start on methotrexate for many months, and ended up spending almost 8 months virtually in bed. Out of desperation I finally agreed to it, and within 10 weeks it worked like a dream. Good luck, it's a tough illness, but I think it makes you appreciate life so much more when you get better!

  • Hi, I was also exhausted when I was taking Methotrexate; its awful! I am currently taking Leflunomide as I couldn't take Methotrexate anymore due to side effects; nose bleeds, headaches, extreme exhaustion, mood slings (you name it, I had it!) etc......

  • My doctor increases my folic acid on the day I take methotrexate and the day after.  That helped.  

You may also like...