My experience with reactive arthritis

I wish I could already tell you more but up till now I'm only having symptoms for a month. I had no treatment so far because it took a while for the diagnosis as well. Are you experiencing any pain in other joints or is it just your knee? And does it keep swelling up again after the drainage of fluid? For myself it's only in my foot so far which makes me completely unable to walk on it for now.

Hope you're feeling better by now

A

Mine started in one ankle after a severe cold and throat infection ten years ago.  Ballooned up hugely, could hardly walk, sent for X-rays in case I had injured it, knew I hadn't. After a few weeks my knees then blew right up too, hips followed and doing anything was almost unbearable . After numerous GP trips with them not knowing what I had I was sent to the rheumatologist who straight away told me I had ReA. Tried various drugs, Sulphazaline, Methotrexate and eventually Quinoric which helped plus oral steroids. Only survived to this point due to injected steroids which temporarily relieved the pain. Lost almost three stone in a few weeks. Problems continued up to my hips which were both destroyed now need replacing but trying to delay it till I can't manage any more. Must say my rheumatologist did not believe in draining joints as in his opinion they just filled up again almost straight away. Stayed on drugs for about 21/2 years now just take prescription painkillers. Have had no major flares but have had episcleriis (eyes) which is related and sadly just feel I have never really got rid of it and my affected joints are all damaged to differing degrees. Sadly this disease affects us all differently. Hopefully you are one of the lucky ones who gets better in a few months and isn't stuck with it long term.

You started with ReA (aka Reiter's Syndrome) later in life than I did. I first noticed it when I was about six years old. My ankles would hurt and swell after walking too much on concrete sidewalks. Later, when I was fifteen, I got a stomach "bug". About six weeks later I began to lose my flexibility. It took several months before it subsided. A year or so later I got the flu and then German measles. While battling the flu, I took lots of aspirin. It worked so well, that I went in a cross-country ski race the day after I left the infirmary. The next day I had German measles. The cross-country ski coach had "issues" because he said I could not go in a race that weekend unless I took the time trial.

The next big attack occurred after I got strep throat from a girlfriend's one and only son. I don't know where they went but I noticed black and blue ankles after bicycling on the roads. It took about six weeks before I really started to hurt. I went to a local ER because I thought I was in trouble. The docs thought I might have a block vein in my leg but I didn't. I started on Indocin for about eight weeks before I went to that doctor's med school professor, a rheumie from England. That seemed to work for that attack.

A few years later I got cellulitis in my left leg. It began with an infection on my left knee that morphed about two weeks after the initial infection. My sed rate went over 100. I had to be in the hospital for two days on IV anti-biotics. My rheumie said he was considering removing my left leg! That attack lasted for nine months. I lost 14 pounds in the next two weeks. The rheumie added methotrexate to my drug regimen when the sed rate seemed fixed at 45 or so. That brought my sed rate to normal within eight weeks. I also developed psoriatic arthritis; both my feet had pustules that looked like poison ivy blisters. Walking was "itchy". My socks showed the "drips" from the pustules. It was unpleasant!

I have had several attacks in the past thirty years. I have continued with methotrexate (subcu).

About two years ago another attack started after I spent some time with my dying mother in a rehab center. I must have gotten some type of "bug" there. A few months later my sed rate went from ten to 85 before it slowly returned to normal. My rheumie prescribed Remicade (infusion) because even though the sed rate had returned to normal, my neck and back were stiff. In fact, I have fused vertebrae in my neck, lumbar, and sacroliliac.

You should do some personal research on the web and elsewhere on forms of arthritis, especially Reiter's (ReA). Be careful where you eat, you walk, you drink, and with whom you have any form of bodily contact (kissing, intercourse). If in doubt, don't. Use protection always!

I have done all of the above, plus trying to keep as physically active as possible. I have biked (mountain and road), skied (downhill and cross-country), kayaked, canoed, swam, run, hiked, hill-bounded, and plain walked. Until I was in a bus accident seven years ago I was very successful in spite of my Reiter's. I got a nasty concussion in the accident that lingered for three years. I could not do much exercise because I got nasty migraines. I am now in much worse shape.

My drug regimen now is gabapentin, methotrexate (subcu weekly), Remicade (infusion every four weeks), folic acid, COQ10, clopidogrel (I used Vioxx and got a few TIAs), and a few other drugs for asthma and allergies.

I hope you don't lose hope at your young age! You really don't have many other alternatives but if you are willing to bear pain and to hope for the future, you can live with the disease. Two final thoughts: do NOT let yourself gain weight (it'll destroy your weight bearing joints) AND since you most likely are HLAb27 positive, don't think of having children. But then if my life and my observations of many arthritis support groups are indicative, you probably will have very few significant sexual relationships. Most of the people I saw with arthritis were already single or divorced. It's just the reality.