My History of RA
Autoimmune Disease is a family-affair – it includes me (RA), two daughters (one RA & one Fibromyalgia) & my son (Alopecia).
38-yrs ago, at age 36, I used to run 3-5 miles every-other-day, until right foot pain developed. A podiatrist injected Cortisone which gave relief for a couple of weeks, but subsequent pain ended the running, so I took up bicycling until a nasty crash involving lungs, ribs, shoulder, concussion, etc, got into my head, psychologically.
Not long after, my PCP diagnosed RA during an annual physical. I worked out 3/week at a gym for 5 years before a rotator cuff tear (surgery), but continued the gym at reduced weights until tearing the other shoulder (surgery). So bought a treadmill & walked 5 miles/day, now reduced to about 3-1/2 miles daily in Winter & 5 miles/day outdoors in moderate weather. Have had 6 joint/tendon surgeries and am stalling an Ortho who recommended a shoulder replacement 5 years ago. Remicade eased the pain, which never re-intensified, though the joint connections are iffy.
Ive been thru the progressive gamut of meds over the years, with MTX being the worst (rapid weight-loss, fatigue, vomiting, hypotension, etc) and Naproxen, the best, which I took too long, resulting in anemia from intestinal bleeders.
Two years after beginning Remicade, I experienced a series of 10 hospitalizations in 12 months (Feb 2016 thru Feb 2017), for recurrent Sepsis, stopping Remicade after the first admission. Local MDs and those at Mayo Clinic were unable to determine the cause. After the 4th admission, my typical, hospital-visit procedure was to hang an antibiotic (A/B), IV bag for a week, and send me home with a PICC line to use for a few weeks. Testing to find the cause of infection was no longer done, other than initial blood cultures to determine which bug I had.
You may ask ‘what’s that have to do with RA?’ and here’s my answer.
While research points toward a connection between auto-immune difficulties and the gut, my docs now speculate reflux (non-GERD) is allowing small-intestine bacteria to back up into my liver, resulting in septic infection. After the 2nd admission/treatment with A/B-IVs, all RA symptoms ended. In Jan 2017, following the 9th hospitalization, an Infectious Disease doc started me on prophylactic, monthly-rotation doses of A/Bs Cefdinir & Augmentin, both of which are effective treating gram-negative bacilli. I had no more admissions for 18months (Oct 2018) for a liver abscess containing Pseudomonas, a bug not responsive to the two, scripted A/Bs. Cipro, effective treating Pseudomonas, was added to the mix. The A/Bs seem to be keeping me out of the hospital (a good thing), but will eventually become ineffective (a bad thing), which may immediately precede ‘check-out’ time. My point here is the A/Bs seemed to have kept the RA in check.
Recently, after a wrestling match involving replacing a 70-lb microwave with another, my right wrist/hand flared. A Cortisone injection ‘fixed’ it, but within a week the left hand/wrist followed suit. My PCP scripted a Prednisone mini-burst, which ended the flare, although the wrist is still slightly tender. At a subsequent follow-up with my rheumy, who thinks the flare, untreated, will soon return, I was scripted with Plaquenil, which had eventually proven ineffective years ago. Due to liver involvement, he won’t consider biologics. Being hopeful he’s wrong, I’m holding off on the Plaquenil, until when/if the flare(s) returns.
After living with progressive RA for 38 years, I can offer a few pieces of advice:
1. Don’t worry what the future may hold for you in terms of difficulties, pain & effective treatments. Worry doesn’t take away tomorrows problems, only today’s peace.
2. Accept the idea that your RA, a progressive disease, will worsen and you’ll need more potent meds as time goes by. Exceptions? Rare.
3. RA, which is not well-understood, is treatable, not curable. Have faith in your rheumatologist or other MD.
4. Use it or lose it – while it’s important to not abuse tender joints/tendons, it’s equally important to use them to maintain flexibility & strength while you have some. I do daily, flexibility work to keep cervical stenosis at bay. Also, exercise is a great stress reliever.
5. Alcohol is a stress inducer. For me, that meant more than one drink/day. Don’t over-indulge, and don’t drink if your doc says “No”.
6. RA made me drop out of activities with family/friends, a huge mistake. Socialization is a tremendous, psychological help. But don’t constantly complain about your ills or others will avoid you. Being a good listener will help increase your circle of friends who will understand that you’re in pain.
7. Finally, if you’re able, do the things now, you’ve always wanted to. If unable, find something you ARE able to do and do it. RA progression will slow you down – good memories become hard to come by.
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