Methotrexate & severe fatigue

Options

Hi...just been diagnosed with Rheumatoid & started on Methotrexate on Friday..Sat it was like I was hung over with a headache & tiredness (no sickness)..sat night took folic acid..Sun was the same...Monday (yesterday ) the fatigue was so bad by tea time I didn't have the energy to chew..today (Tuesday)tried to log on to work from home & had to leave as I couldn't think straight. Is this normal? I have spent most of the day in bed. I'm glad I don't have any tummy upset but this draining fatigue is awful - had anyone had it this bad & does it get better?

Comments

  • GillH
    GillH Member Posts: 8

    Hi

    I really struggled at first - similar to what you describe. I started methotrexate in April. I would say that most weeks, but not all, I still have a reaction to the injection but not as bad and not always the immediate next day.

    My dise was increased 5 weeks ago and I was worried the reaction would increase too but I wouldn’t say that has been the case.

    Wishing you the best as you continue with treatment.

  • Arciere
    Arciere Member Posts: 131

    Hi @Lindjemp

    I hope what I’m about say helps.

    The fatigue is the worst part of this disease (for me at least). Do you know what type of RA you’ve been diagnosed with?

    Here is my list of fatigue busting things that may, or may not help.

    - Oral steroids. prednisolone. I found these effective but they will usually give them for short term. Your inflammation may be raging and this might help. Talk to your GP or RA Nursing Team.

    I am of the view that my gut is linked to inflammation. So I have been following a very different diet to help manage the inflammation which in turn causes my fatigue.


    - no gluten, artificial sweetener, reducing sugars ending in “ose” as much as possible, I.e no honey, glucose etc. No deadly night shade veg, so no white potatoes, tomatoes, aubergine, peppers etc. lately no red meat - not sure about this one.

    I spent lots of time and money trying to find a supplement or quick fix for fatigue. It was only when I bought an RA cookbook that I tried excluding things from my diet. This worked a treat.

    Microbiome. I do try and look after my microbiome. I do this through pre and probiotics. E.g lots of fibre through varied veg, and fermented foods like kefir sauerkraut and things.

    Emotional stress. I definitely attribute emotional stress to an inflammatory reaction and fatigue. So try and distance yourself that causes worry or emotional stress.

    Finally an easy thing to say, but hard to do - is staying hydrated. Water doesn’t cut it for me and since I don’t consume artificial sweetener it’s hard to know what to drink. So I go for sparkling water or those flavoured sparkling waters that claim to have no sugar or artificial sweetener.

    Basically I had a classic Mediterranean diet (ex Jamie Oliver fan) that consisted of: French pastries and bread (gluten), pasta (gluten), potatoes and tomatoes (deadly nightshade), Diet Coke (sweetener), Guiness (gluten) etc Since making these changes I do feel like it’s [fatigue] in check, although I do still experience fatigue flares.

    This all comes with the caveat that I do take a biologic medication which will likely be contributing. However, I made the changes to my diet about two months into my biologic medication and definitely felt better as a result.

    I hope this helps. The fatigue will get better but it might be a long road. There is a fabulous poem by Stephen Fry that tries to describe what you might be feeling like the weather. It’s very real and may not improve tomorrow but the season will change for you.

    hope this helps

  • olivia_b
    olivia_b Moderator Posts: 108

    Hey @Lindjemp

    Welcome to the online community. I hope you find it a safe environment to support you through this tough time.

    I am sorry to hear you are going through a rough patch with your treatment. I was on MTX just over a year ago, and I felt the same side effects. Unfortunately, I couldn't find much to combat it before I came off the medication for other reasons, but I did notice that over time, the side effects calmed down once my body adapted to it. Everyone's body is unique with this kind of treatment, so you may potentially adapt quickly and the fatigue may wear off soon; however, my recommendation is that you keep your specialist in the loop about how MTX is affecting your day-to-day life and if it becomes unbearable, then they may begin to look at the options of biologic medications.

    I am sorry that I can't offer a more comprehensive solution. I hope this brings some reassurance that things will be alright either way.

    Best wishes, and please do keep us updated with any changes or questions, Olivia x

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm