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?