Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club undeferential spondyloarthropathy in early 20s

Hi everyone,

I'm new here and was wondering if anyone has the same condition as i do. I've had on and off pains in my knee since i was a teenager, but my knee would never swell then. It would randomely hurt really bad that i could not bend my knee. I had two meniscus surgeries few years ago and since then i've had a swollen knee every day. I'm 25 now and a year ago i was diagnosed with undeferential spondyloarthropathy, when my orthopedic doctor sent me to a rheumatoid doctor because he didnt know why the swelling in my knee would not go down. I'm pretty upset right now and really worry my disease can differentiate into something really bad. For now im taking salfasalazine and mobic every day. My knee is constantly swollen and achy and few times a month it gets extremely swollen and i can barely walk, which usually lasts around 5 days. Except those times its swollen just a little and i can do everything i want to, including vigorous exercise, except running. I don't get the pains i used to get when i was a teenager in my knee, just swelling and associated pain. Sometime after that my achilles became swollen and really hurt. Although pain went away with drugs, it is still swollen. My doctor is recomending Enbrel but im very hesistant to take it becuase of the side effects and i heard it worsens your disease if you stop taking it.

I am very interested in hearing from people with undeferential spondyloarthropathy, especially in my age, what medications you are taking and whether your disease is changing in any way, progressing or improving. Also i would appreciate your thoughts on Enbrel.

Thank you all very much!

Anya

Hi Anya, welcome! Sorry you need to be here, but you've found a great group of people and a wonderful support system.

I was diagnosed with Undifferentiated Spondyloarthropothy (USpA) at age 21. I've had USpA to some degree since I was 16 or 17. Since my initial diagnosis, it has really distinguished itself as Psoriatic Arthritis (PsA). It was already leaning that way when first diagnosed, but further supporting symptoms have since arisen.

Before and after diagnosis, I was initially treated with a whole slew of different NSAIDs (ibuprofen > naproxen > meloxicam > indomethacin > flector patch > voltaren gel > celebrex > relafen) and kept having to try new ones due to side effects or lack of effectiveness. Relafen has been the most tolerable and most effective for me, but we all have unique body chemistry. Just don't be afraid to try a different NSAID. The effectiveness of one does not predict the effectiveness of another!

I was diagnosed while I was on Celebrex, and we added Sulfasalazine (SSZ) at that time. It never worked for me, but I tried it for 6+ months anyway. During my SSZ treatment, we finally found Relafen, and added Plaquenil (another Disease Modifying Anti-Rheumatic Drug (DMARD) or immunomodulator like SSZ). That combination helped. We finally added Humira (same drug class as Enbrel) 6 months after my diagnosis. Humira is my hero. It takes a while to kick in (often 3+ months), if it does, but it's worth the wait. It has made me feel like a real person again, if that makes sense. It killed my fatigue, knocked out my morning stiffness, decreased my pain/inflammation exponentially, and put several of my secondary conditions into remission! <3

thanks so much for your reply! Sorry to hear you've been diagnosed with the PA. Luckily i dont have it, at least for now. Are you able to exercise, do you get any relieve after if yes?

Thank you so much!

My son was diagnosed at age 11 and is now 16. His heels were the first to have symptoms, then the ankles started to swell- they were the size of golf balls. His knees had some swelling but not as severe. He started off with NSAIDS and then added MTX. Neither one helped a lot. They next put him on Enbrel. It was like a miracle drug for him- swelling went down within a few weeks. He could walk normally again. He went back to heavy duty soccer at that point. In high school, he even started running cross country. After about 2 years, the Enbrel became less effective and he switched to Humira. Again, it has worked miracles. He plays soccer at least 5 days a week and does great. We do think it is becoming less effective and he may soon switch to Simponi.

Enbrel and the other TNF drugs can be highly effective for AS. Yes, there can be some side effects, however, the inflammation caused by AS can cause permanent damage to your joints. So far my son has had no side effects from Enbrel or Humira, and the drugs have allowed him to lead a normal life. When he has tried to taper off TNF drugs, or even misses an injection for a couple of days, he starts having obvious stiffness and inflammation. Before these drugs took effect, he had a hard time moving normally, and he ached all over. We have weighed the risks and opted to use the drugs to prevent further damage to his joints.

There is no evidence that AS gets worse if the anti-TNF's are discontinued. Rather, the drugs keep the AS under control; the symptoms just return if the meds are stopped.

I know it's pretty scary to receive this diagnosis and to start these medications. EVeryone reacts differently to anti-TNF drugs. Some people see relief immediately and some take several months to react. You have to weigh the risks/benefits for yourself and decide what course to take. I can say that in my son's case, these drugs worked very quickly and have allowed him to live a fairly normal life. He never forgets his shot and even reminds me that he needs it- he knows that he will notice it very quickly if he doesn't take it! Gook luck and best wishes!

Hi there, thank you so much for your response! Its such a bummer your kid was diagnosed in such an early age. I appreciate your comments on the Enbrel, i am at the point where i am ready to give it a try. I stopped taking Mobic every day for few weeks now and my knee is terrible, i ache all over and especially in my knee, in addition to a really bad swelling in my knee. I did not know that the swelling will cause damage to my joint in the long run and was considering just sticking with the swelling and not using Enbrel to avoid the side effects, but i guess that's not a good idea.

Thank you very much again!

I am 25 and I was diagnosed with USpA in September of 2011. It took almost a year for me to be diagnosed. I am taking 2500mg a day of Sulfasalazine, I was on Prednisone which did keep me from having any swelling, since I've stopped taking the Prednisone I have started swelling again. Mobic never worked for me. I have significantly changed my diet and habits since I got diagnosed. I eat healthier now than I used to, I stopped drinking alcohol, and started exercising. It really does make a huge difference.

I've also recently decided to start looking into more natural remedies. I'd like to get with a nutritionist and try to add foods to my diet that will help reduce swelling and inflammation, As well as strengthen my bones and joints.

hi, thanks for replying to my post.... im on 4000 salfasalazine a day and i think its been helping me.... exercise makes a huge difference for me too... the more i work out the better my knee feels.... i thought i had it all under control.. but 3 days ago my right eye became red and hurts like hell, sensitive to light..... i went to see a really good ophthalmologist and was diagnosed with iritis/uveitis and scleritis... which are associated with my auto immune disease and my rhumatologist said she expected it... this really sucks now, it hurts so bad and i have blurred vision in my right eye (typing with one eye closed)... i started taking pred forte so hopefully it helps.... the doc said he thinks it will go away in few weeks but most likely be coming back every so often...... agghhh..... im only 26 and feel like im 60 or something.... wondering whats gonna be next.....

Anya, I'm sorry eye inflammation has joined the club for you. How awful. I'm hopeful that I'll never gain that aspect of the disease - I have more than my fair share of genetic predisposition for eye diseases at it is! I sure hope your iritis/uveitis/scleritis (all 3 at once?!) clears up quickly!

Exercise is helping me a lot too. I'm glad SSZ is helping, and surprised you're able to tolerate such a high dose. I never went above 3000mg (though I think we were titrating up to 4000 when I had to cut back) and barely tolerated 2000mg. You must be lucky enough to not have the side effects I did.

thanks for the support, i hope nobody get this stuff its absolutely brutal....sorry im actually on the 2000mg a day... made a typo...i was on the 1000 a day but that wasnt really helping..... what were yr side effects from ssz??

I had diarrhea and nausea from the SSZ predominately. I also got mouth sores if I forgot to take my folic acid, but that was never too big of a deal. Unfortunately it also never did anything discernible for me in the ~9 months I took it. My peripheral symptoms may have gotten a tiny bit worse once I went off, but if they did, it's wasn't significant enough to keep dealing with the side effects, y'know? That's really the only medication I've gone off of against doctor's orders, but he was actually fine with it when I told him I had. I wished I had done it sooner when he didn't react!