HELP! 20 years old with Reactive Arthritis.

Hi Axel,

I'm 20 too and was diagnosed with what the doctors intially thought was reactive arthritis when I was 19. I had loads of pain and stiffness in my left knee. It sounds like you have more classic symptoms than me as after about a year the pain spread into my heels, hips and back and I was rediagnosed with peripheral spondyloarthritis. I took sulfasalazine for around 5 months before being switched to methotrexate. Ask your doctor to prescribe you naproxen for pain relief as this helps me alot. I'd also recommend you try and take up swimming as the more you exercise the joints the better you feel. Reactive arthritis typically takes around 6 months to go away so hang in there, it is extremely frustrating but you will get better. I've been told that I will get biologics in 2 months time if I have not improved and I am going to take them as I've been suffering for over a year now.

Good luck!

M

Not had ReA as bad as you, but I have had it running for 6 months now (Campylorbacter kicked mine off), sometimes it sets up in my lower back and that's me unable to get out of bed for 24 hours, or it may go for my feet, meaning 50 meters is the most I'll manage to walk, or the hands in which case cannot drive or open jars.

 

Bottom line, most of the treatments you have listed are long term medications that stop the symptoms occurring rather than giving you short term pain relief. Some take as long as 4 weeks to kick in so you need to be patient and give them time to kick in (I know, it sucks). Many have side effects if you take them longer term (e.g. the steroid Predisone can cause obesety)

As per other poster, I really find that Naproxen helps, as it kicks in within 15 minutes and gives relief for around 12 hours before dropping off. just remember to always take it with food, and ideally a protein pump inhibitor (Omazerpole) to protect the stomach from the Naproxen.  After the Naproxen has got me moving, moderate exercise really does help reduce the overall symptoms.

insofar as I can tell, there is no #cure# for ReA, only management of symptoms during a flare up. So this may well keep coming back every time you get ill (as soon as my kids start sneezing I know i'm going down in the next day or two). there's a test for a gene (HBL27 I think) which is a marker to show if your are more likely to suffer from ReA.

Anti biotics won't do anything for you if the original infection is gone.

I am 44 years old and got ReA from chlamydia. I had the worst possible diagnosis beeing HLA B27 positive and getting this from chladmydia. I was in a wheelchair for two months, and at my worst i lost 10 kg’s of by body weight and puked from pain on a daily basis.

After 3 months however, i woke up one morning beeing able to move my knee joint and with a lot less pain. In the following weeks my recovery was noticeable from day to day.

You need to stay strong and remember you will get better.

Biologics are not dangerous. Welcome the treatment if suggested by your doctor. Bilogics are used by a lot pf people, including those with Chrons disease and in general they will have less norticable side effects than for example Sulfa.

Antibiotics won’t hurt to try,  but it might not help much in your case as they have been effective only for some parients  getting ReA from std’s.

Regarding  my experience, i was told by doctors i would have to brace myself for chronic problems. But within 3 months i could walk again and quit medications. You need to stay positive.. with my genetic makeup and the triggering disease i was told this might never improve, but it did.  5 months in, i am now only having pain a few days a week, and though i still limp a little bit i am able to work, study and work out.

Axel, Well, join the boat!!! I have had Reiter's Syndrome for sixty plus years. I am HLaB27 positive. At first my parents, who really didn't care, said I was having "growing pains". My ankles would swell if I walked on the concrete streets of New York City for too long (usually with my mother as she went shopping). It was not until I was about 15 or so that I got a stomach bug during the summer while skiing at altitude (probably giarardia). Anyway, about two months later I got stiff. It lasted for two years off and on. I experienced irregular swelling on both sides of my spine plus some lethargy. When Sonny Liston and Ali fought in Lewiston, ME I was in the infirmary with German measles. I was taking lots of aspirin to reduce the fever. As soon as I got out of the infirmary, I did a cross-country ski race; the coach said if I did not race in the practice I could not ski for the team that weekend. I raced faster than another boy for one loop who went to the Junior Nationals, but tired somewhat on the second. The coach was impressed; however, the next day I was back in the infirmary with the flu. I was able to stay in high school (not that big a challenge).

I had a more significant attack during my junior year in college. My hips and lower bag started to hurt so much that it was difficult to ski, especially on ice! Each chatter of the skis sent some pain shooting through my hips. I spent a few weeks on crutches when it got bad but taking some aspirin seemed to help.

Two years after I left college my girlfriend's son gave me strep throat. Within two months my body started to ache, slowly at first. First, it was the ankles swelling (I thought it was a long bike ride). Then, the rest of the body tightened up. I started taking Indocin and aspirin for several months. Since that did not provide much relief my doctor (an internist) sent me to his med school rheumatologist. He tried sulfasalazine, butazolidine (banned for many years, but banned first in horses). Gradually, the attack subsided.

Two more years later I got cellulitis in my left knee. I went to the hospital for IV anti-biotics. Two weeks after that I woke up with incredible pain throughout most of my body. My rheumatologist put me on methotrexate (MTX), 9 tabs, 3 mg each, weekly). That gradually brought my sed rate down from over 100 to about 75 in maybe two months. That rate gradually diminished over the next four months. Its side effects were nausea, headaches, and sores in my mouth and nose. I put an anti-biotic cream on those sores to prevent infection. I also smoked some week to reduce the nausea and help my appetite. I had lost 14 pounds in two weeks following the initial infection. The attack lasted about nine months.

I tried Enbrel without MTX for about nine years. That was a BIG mistake as the Enbrel hid the progression of Reiter's Syndrome (RS). Its effect was that I had to get my left MCP replaced, my right ankle scoped, and my right shoulder scoped. Then, six years ago I had both TMJs replaced.

I have tried Humira, Cosentyx, and Simponi. None worked. I tried Otezla; it didn't work as expected but I got somewhat depressed (one of its side effects). I tried prednisone again (after a thirty years hiatus). I got very angry with my dog so I stopped that. I am now taking Remicade every four weeks at an intermediate level of dosage. I started it after I had had my most recent attack that lasted about 15 months (my neck got terribly inflamed; muscles and tendons swollen and tight). After the third treatment I noticed some improvement; I could walk much better without feeling every bone in my spine jarring with each step.

Until 2016 I have been able to keep a somewhat active lifestyle although very diminished from what it might have been. The last two years have been a real "downer" as the anklylosing spondylitis became severe; C3-C5 are fused, C1 only exists as a shadow, several back vertebra are close to fusion; however, my spinal canal remains "OK" although somewhat narrow in one place.

I credit my good fortune to a few good doctors, to an active lifestyle (even when it hurts), and to avoiding infections. My social life is abysmal as people are all too quick to notice my stiff posture and lack of flexibility. Women, understandably, do not want to be with someone who has an inherited disease and, honestly, I don't want to pass HLAb-27 onto anybody. On the bright side, I have not gotten any STDs that increase the risk of another arthritic attack.

Bottom line: do as much research as you can, take personal notes (e.g., blood pressure, heart rate, temperature, weight via spreadsheets) especially when you have attacks; the doctors love 'em; the documentation drives them "wild" and after you start a new med (I didn't think of that until recently). Stay as active as you can; walk, swim, bike; avoid running but try hill-bounding (see: https://cxcacademy.wordpress.com/tag/bounding/).