Ask the Experts – How did you Feel When you Started Treatment?

Our experts help us paint a picture of what it felt like when they first started treatment.

Kelly Mack

Because I was diagnosed at such a young age, I do not remember myself what it felt like to start treatment. My mother had to coax me into taking my medications. I gave her a really hard time because they tasted terrible and I didn’t want to swallow them. I’d also hide the pills in the chair cushion while she wasn’t looking! When I was a little older and could understand more about the importance of my medications, I took them willingly. In fact, I remember in elementary school a substitute nurse tried to give me the wrong pills one day and I corrected her because I knew the difference. Later, as I tried different treatments I felt a variety of emotions: Hope that the new medication would help alleviate my symptoms and slow the disease. Fear that the treatment would not work and sometimes fear because some of the treatments were injections that gave me pain or discomfort. Anxiety because of the uncertainty around if my medications would work and how my disease might progress.

Monica Sengupta

I was a bit scared. I was placed on steroids, methotrexate and pain killers right away. I was resistant at first because the side-effects were so intense as my body got used to the medications. I felt so good after my first flare (which led to Dx) that I didn’t think I needed them. I didn’t understand that I needed to take these medications to control and prevent further symptoms.

Leanne Donaldson

When I finally started my first treatment, I was so hopeful. We get so used to taking medicine and feeling almost immediately better that it is easy to forget that it doesn’t always work that way. That is certainly the case with RA. Everything takes much longer than you think it would. At the beginning of treatment, I really didn’t know that was the case so I went in, blindly hopeful that I would finally feel better.

How did you feel when you first started treatment? Share in the comments below.

Comments

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  • Connie Rifenburg
    10 months ago

    I was so surprised because I was feeling fine one day and the next day my feet hurt, then they became swollen, and I couldn’t imagine what was happening. I went to my long time primary Dr. and she said, it “could” be gout, but I suspect it’s Rheumatoid. She sent me for blood work. My RA factor came back at over 500!

    No question I had it. But now what? It was in immediate need to be able to walk on my feet again for work. I went to a Rheumatologist and she started me immediately on Methotrexate and prednisone. Within a few days I was fine. Well… I figured that was that. Healed.

    Nope. That was 15 years ago. RA changed my life dramatically and within 5 yrs, I went into a 2 yr flare that kept me bedbound and placed me on LT disability. At age 57, I was a liability to my employer and so I was let go from my job. I went on S/S disability and was placed on it without issue thank goodness, but it was not enough to live on and I lost my home. Then I had to begin early retirement from my state pension which reduced it by about 1/3 and all the medical bills and cobra for 28 months used up my 401K.

    My health has never been the same since then although I’ve been managing my flares better with each year and now they seem to affect me only once or twice a year, but rather than a comfortable retirement that I had planned for as a single woman, I now must live in subsidized housing instead of my home. Oh, I’m grateful for the help and safety of my “independent living” apt with security and intercom help if needed, but I’m now 67 and I’m living with mostly 70-90 yr old neighbors in a 16 story high rise overlooking a parking lot.

    I guess RA proves that “Man plans and God laughs”.

  • Monica Y. Sengupta moderator
    10 months ago

    Hey Connie, thank you so much for sharing your story! I am so sorry that you faced so much difficulty because your RA but this (unfortunately) is a sentiment many of our community shares. You are definitely not alone and please know that you can always reach out if you need to! Thank you again for sharing! ~Monica (RheumatoidArthritis.net Team)

  • Tich
    10 months ago

    I was disappointed that my Scleritis didn’t clear.

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