Early Days Ramblings

Hello friends…I was diagnosed four months ago. I am 51 years young. I was/am struggling a lot with having to take Methotrexate. My GP put me on Prednisone while I awaited my consult with the Rheumatologist. When I took that first dose of the steroid I felt amazing! Hmmm…what does that mean? I felt warm…calm and almost pain free. The steroid had a weird effect/affect on me. I felt like ‘everything in my world was okay’. I just had a sense, all over of ok-ness.

My Hesitation

I was so scared to take the Methotrexate. The specialist gave me a couple of options re: medication. One of the meds could possibly have adverse affects on my kidneys and liver…the second option for meds…it could cause blindness.I opted for the possible adverse affects on my kidneys and liver. I kinda thought….well if this goes ass up at least I could get a kidney and or liver transplant….blindness? ….well that’s a no win situation. Seriously though I was so scared of taking the ‘Chemo drug’.

I am sure you all know how it goes….googling side effects..then that leads one on to googling the side effects of the side effects that leads one on to googling the side effects of the side effects of the side effects!

My already lowered mood was becoming lower so I figured I had nothing to lose. I swallowed that little Methotrexate pill…(oh did I mention that the chemist where I got my script filled looked at me with one eyebrow raised and asked..’Have you had this medication before’?…whereby I, on jelly legs, trying to look unaffected by his question answered….’Ahhh, no?’…He replied…’Ok, well just ensure you wash your hands thoroughly after taking the Methotrexate as it is a toxic substance’. To which I replied….looking all brave and unaffected…’ yes, yes, ok!)

It took me 7 weeks to find bravery to swallow it. I have only had one dose….followed by the Folate. It is too early to tell of the possible positive effects. Yet I can say that so far….even though I have only had one 10 mg tablet….I have had no adverse effects. Understanding this disease has been and continues to be a major learning curve. It is so hard to explain how RA affects me day to day to people who have no knowledge of RA.

RA’s affect on me

Some of the things I have noticed that may be as a result of the RA are;

  • An all over feeling of unwellness
  • A foggy brain
  • Feeling like every movement takes a monumental effort
  • Feeling like I am walking backwards over sand
  • Feelings of hopelessness due to pain and knowing this is a progressive disease
  • Headaches
  • Exhaustion from doing very little
  • A very sore jaw
  • I could list a load of things yet I am remembering I am posting this on an RA site….thus you all will ‘get it’! The one comment that has stuck with me that I heard from three friends was…’ Well it could be worse…you could have cancer’! To which I replied ‘ Yes, that would then be easier for you to understand’. On hard days I wish I did have cancer. Sorry for saying that as I am very great full I don’t. Just some days are sh*t.

    Thank you to whom ever read my rambling post. Go gently, be kind to yourself. Love from me.

    This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

    Comments

    View Comments (7)
  • Ed Burgoyne moderator
    6 months ago

    Kathy,
    Thank you for sharing your story and reaching out for help on what you are now having to go through. As you noted in the title of your story, Early Days, these are your early days of RA.
    Take notice of what your body is telling you, don’t let anyone feel sorry for you, make the best of your Rheumatologist visits and never stop fighting no matter how much of a bad day you are having.
    Having RA does not mean the end of the world, but surprisingly the lifestyle changes you may have to make may open a door to new experiences that could change you in interesting ways.
    Hang in there and good luck!
    Ed B.

  • Richard Faust moderator
    6 months ago

    Hi Kathy. So sorry to hear about the diagnosis, but glad you have sought out a place you can get information and support. Your concerns about treatments in general and methotrexate in particular are completely understandable, but know that there are many in the community who take it successfully. My wife, Kelly Mack (a contributor here), was diagnosed at two years old and took methotrexate for many years to good effect. Of course, everyone’s RA is unique and, thus, how they will respond to a treatment is unique. This article from our editorial team gives an overview of methotrexate: https://rheumatoidarthritis.net/treatment/methotrexate/. Also, in this article one of our contributors looks at some of the concerns with methotrexate and his experience with it: https://rheumatoidarthritis.net/living/methotrexate-the-ra-drug-many-love-to-hate/. The decisions on treatment are truly personal and, for your protection, we cannot give medical advice over the internet. Hopefully other community members will chime in with their experiences. Wishing you the best and keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  • Kathy Costelloe author
    6 months ago

    Hi Richatd,
    Thanks for your reply and the article links, its much appreciated.
    Now I’m off to read them!
    Take care,
    Kathy.

  • Monica Y. Sengupta moderator
    6 months ago

    Hey Kathy, thanks for reaching out and sharing your story!! I am glad you finally tried the Methotrexate…Have you noticed any difference? I’ve been on it for eight years (since my diagnosis) and even though I’m not too keen on it, I have to admit it has really helped me.

    I definitely understand your hestitation as these are really strong medications with even stronger side effects but I think as long as you voice your concerns with your doctor and do your own research I think everything will work out.

    I thought you might enjoy some articles (the one of brain fog I wrote earlier this year). You are not alone in feeling some of these symptoms as many of our community members also liken RA to feeling like they have the flu!

    https://rheumatoidarthritis.net/living/all-about-the-brain-fog-all-trouble/ https://rheumatoidarthritis.net/symptoms/fatigue-and-weakness/

    Have you spoken to your doctor about your symptoms? S/he may be able to help you find some relief.

    Thank you again for sharing and being part of this community. Please reach out whenever you need to!! ~Monica

  • Kathy Costelloe author
    6 months ago

    Hi Monica,
    Thanks for your reply and all the i fo and links you have included its much appreciated.
    No unmanageable effects from the MX as yet. Due for an increase in two weeks so Im crossing everything that doesnt hurt!
    Go Gently,
    Kathy

  • Iwillsurvive
    6 months ago

    MRx caused extreme fatigue in me. I still work 40+ hours a week and had to change meds. Finally after 20+ years I am on Enbrel.

  • Kathy Costelloe author
    6 months ago

    Thanks for your comment Iwillsurvive. Sorry to hear about your fatigue. I’m super impressed that you still manage to work 40 hours a week!
    I will go and research the Enbrel now. I’m still learning about the RA thus I’m taking on anything and everything others suggest.
    Thanks again,
    Be kind to yourself,
    Kathy.

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