Sunday, July 13, 2008

Palindromic Rheumatoid Arthritis

I'm 54 and was just diagnosed last November (2007) with PR. I am sero-positive, but my doc feels my symptoms are "still PR, not RA".

I'm really not sure exactly when my PR started, but I know it was at least 2 yrs ago. For many years I've had osteoarthritis and of course any aches or pains are attributed to the osteo getting worse. I think the initial symptoms started in my feet and knees. There were times that my feet would hurt so much it was hard to walk. My feet/ankles would hurt for a few hours or days and then all would be good for a few weeks. Other times it would be my shoulders, or my wrists, or fingers. Initially I had little swelling and no redness, no matter what joint or how severe the pain was.

Since I didn't have a primary care doctor (PCP), I didn't do anything about the pains for several months....until my shoulders really flared up. Both shoulders, over a matter of a few hours, became very painful and any movement made it worse. I could lie on my shoulders (I always sleep on my side), but the least movement sent sharp pain down my arm. I went to see an orthopedic specialist about my shoulders and was diagnosed with bursitis. The day I saw the doc my pain was only about a 2 or 3 (not the 7-8 it could get to!) and I could freely move both arms. I had an ultrasound done and, since there was nothing abnormal seen, the doc declared that he was right, it was bursitis! (HUH?) The only treatment offered to me was cortisone injections, which I refused.

After a few months the shoulders suddenly were back to normal. If this was bursitis, it was certainly atypical!

A few weeks after my shoulders improved my ankles started to hurt. Most of the time it was just a bit painful to walk or move my feet, but every once in a while they would ache enough for me to take an over the counter (OTC) pain med (Acetaminophen, ibuprofen, etc), but got little relief. Again, I ignored the ankles.....I was still overweight (obese, bordering on morbidly) and figured with my age and weight it wasn't surprising that my ankles hurt....but wondered why there was no relationship between the amount of pain and the amount of walking I did.

One day last March (2007), my right ankle started to hurt and within a matter of hours it was so painful I could barely walk. Since I still didn't have a PCP, I went to urgent care and was told first it was gout, then it was "just an injury", even though I was positive I hadn't injured it! I was given a prescription NSAID (non-steroidal anti-inflammatory drug like ibuprofen) and the pain, swelling and redness was gone the next morning...completely! Either that was one heck of a medication or something else was going on.

This was the first time I noticed redness and swelling of a joint that was hurting....but it wasn't the last. Most of the time, if I get redness and swelling it's one of my fingers or my wrist. My shoulders and knees will be hot to the touch, but no redness and little swelling.

About 3 months after the ankle incident I finally had my appointment with my new primary care doc (PCP). This is a doc I've seen in the past, but had to go elsewhere because of insurance. I liked him, and after going to 3 different docs and not being happy with any of them, I decided to try this guy again. Initially he wasn't accepting new patients, but after a few months I found out he was and was able to make an appointment.

Of course the day of my appointment nothing was inflamed, so my doc told me to call for an immediate appointment the next time i had something flare up. About 2 weeks later my right wrist and index finger flared up and I was able to get an appointment. My doc looked carefully at my hand and wrist, declared I needed to see a Rheumatologist and ordered some blood work (Rheumatoid factor, sed rate, etc).

When I went to the rheumy I again had no symptoms, but he listened to me and diagnosed me within a few minutes. My rheumatoid factor (RF) was positive as was my Anit-CCP. Inflammation markers (CRP, Sed rate, etc) were normal or very close to normal. I don't have any nodules.

My pain varies...one day it may just be a twinge or stiffness in a joint or two....other times it feels like I've been beaten. Sometimes the pain lasts for just a few hours, other times it lasts for days or weeks. Most of the time I have no redness or swelling in the joint that's bothering me.

On the recommendation of my rheumy (after I told him I didn't like the idea of the newer RA meds), I've been taking Doxycycline, an antibiotic, I started the Doxy in January, and I think I'm getting good results, but I'm told it's too soon to tell if it's the Doxy or I'm just in a natural remission. I think it's the Doxy as the amount of joints involved and the amount of pain is MUCH less that what I'd had prior to starting it.

I am also trying to stick with a natural unprocessed diet that is low in carbohydrate, but lately that hasn't been going too well. I've had a lot of stress over the past 8 - 10 months and I'm a stress eater....and of course it's always the food that are the least healthy I reach for. I take probiotics and am going to look into digestive enzymes to see if they will help.

Unlike others, I have no real idea of what might have set my PR off. I've had plenty of infections, including urinary tract, intestinal (diverticulitis), and respiratory, but cannot link any of them to the onset of my symptoms. But, I firmly believe the theory that this is a latent infection, so will continue to use antibiotics to treat it. If one doesn't work I'll try another....and only go for the "heavy duty" RA drugs if all else fails. Maybe I'd feel differently if I had joint destruction, but at this point I am taking medication to relieve pain and inflammation.