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My RA Journey

I’m 57 years old and this is my RA journey.

4 years ago I was training for a 40 mile one day hike. Seemed to be in the best shape I’d been in for many years. 10 miles of hiking 4 days a week. Pushups, chin-ups and squats for training.

The symptoms began

Suddenly got neck and shoulder pain. Pain become intense so that I couldn’t sleep. Had a day or two of chills, sweats and flu-like symptoms.

Went to orthopedic doctor and he gave me a tens unit and meloxicam. Broke out in an all over body rash that night so I stopped the meloxicam. Thought this was an allergic reaction.

Within a week I started getting ankle and leg stiffness overnight. I was still trying to get in shape so I thought it was normal from training and being old.

Two weeks after the neck pain and chills I developed two classic Lyme rashes and was confirmed with Lyme. I remember the tick from several weeks before.

Started Doxi, the neck stiffness and rash cleared up but the stiffness and pain increased everywhere else. Shoulders, hips, finger, knees ankles were stiff and hurting. Hands would be curled if I didn’t keep moving them. Couldn’t sleep much and I only felt good while walking. Bilateral carpel tunnel and shoulder pain got pretty bad.

Two months after this started I finished the 40 mile hike. It was hard explaining to doctors and others that everything was falling apart even though I did the hike. I did therapy for my shoulders and had injections but it didn’t help. Hip injections did not help. I had carpel tunnel surgery on both hands.

After seven months on antibiotics and pain meds the Dr took me off antibiotics and put me on anti inflammatory meds. He said I need to find another doctor starting with a rheumatologist. At this point I had trouble brushing my teeth, taking a shower and dressing myself.

RA was finally confirmed

Rheumatologist confirmed RA and started me on prednisone. Anti CCP – 79 , RF was normal, ESR was normal , CRP was very high.

Prednisone worked amazingly but after two courses my Dr. Said that was all I could take I started plaquenil and Nabumetone. After six months or so I was good. Dr asked how much better I was than my worst. I’d say it was about 95 %

Six months ago I had to reduce Nabumetone from 1000 per day to 1500 per week. I don’t feel so well with out the anti inflammatory’s. Ankles, wrists, fingers and hips are often stiff. Hips are very painful but they believe it is osteoarthritis? My middle fingers are clicking and locking a lot. I go from feeling like I’m “healed” to tired, achey and flu-like symptoms a couple times per week.

Now what?

I’m still 75% better than my worst and it is not horrible but I don’t want to wind up like I was 4 years ago.

Should I be concerned or look into changing meds? Will the finger issues ever resolve if I don’t address it? Could hip issues be RA even though MRI’s show no RA issues?

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

  • David Advent moderator
    2 months ago

    Hi @dp4321, thank you for sharing your journey with our community. As other commenters have noted regarding your questions, you should definitely check with your rheumatologist and PCP about them. I can tell you from my personal experience that my hips were the first two joints to be affected by RA; my first flare, in fact, involved my right hip.

    I hope this helps. I’m wishing you the best along your journey, and thank you for being a member of this community!

    -David (RheumatoidArthritis.net Team Member)

  • Lawrence 'rick' Phillips moderator
    2 months ago

    Your questions are difficult to answer but I do suggest you touch back with your doctor. These are legitimate questions.

    If it were me I would ask about starting a biologic medication and if it is appropriate at this time to do so. I hope you are able to get these important questions answered.

  • Franki King moderator
    2 months ago

    What a journey, @dp4321! Thank you for sharing. I am amazed that you still ended up going on the 40 mile hike even after you were experiencing painful symptoms!

    As far as your questions, it’s hard to say. I trust my rheumatologist to know what is best when it comes to my medication. Have you had open discussions with your rheumatologist about trying something else?
    Feeling tired and achy all over is pretty common and something I’ve just learned to live with but I don’t experience flu-like symptoms weekly. Definitely share this with your doctor and see what they say.
    I do experience RA inflammation in my hips sometimes but if your doctor is saying that it could be osteoarthritis, they’re probably right! I’ve definitely heard of people having two types of arthritis at the same time.

    Hope this helps!

    Wishing you the best,
    Franki, RheumatoidArthritis.net Team

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