Hello everyone! I can't believe I haven't stumbled across this board before now! My story with PsA started back in early 2008. It's started typical, but does have a strange twist these day's. I'm gonna just say hello for now and make sure this thread posts. I don't remember choosing a "user name"?? So i'm afraid to type my life's story only to find out it wont post for what ever reason. This forum is structured a little different then what I'm used too. So anyways, hello, and stay tuned! My story may very well give many here a lot of hope!
It looks like you used Chris as your user name. Welcome to the forum, and looking forward to hearing more.
Oh, okay. My name is well...my name lol. Make's sense. Anyways, here's my story. I will try to make it short.
It all started back in the summer of 2008. My first symptom was stiffness in my middle finger on my left hand. I'm an avid video gamer despite my old age lol and figured the pain was due to too much Madden. Then about a month later I started having knee pain. It was all kinda mild then but I knew something wasn't right. The knee pain progressed and I begin to limp. So I went to various orthopedic type of doctors and was basically told I was just getting older and a little arthritis was setting in. No big deal. Was given cortisone shots and NSAIDS and sent home. The cortisone helped tremendously of course as did the NSAIDS. So I went maybe 6-8 months with just mild pain and didn't think much of it. Then one day my feet started to hurt and everything went to hell. My feet ended up hurting so bad I couldn't even push the clutch in on my truck without crying out in pain. Walking was near impossible. So my pcp referred me to a Rhuemy for further testing. So after several test and a negative RA Factor test I was diagnosed with non specific inflammatory arthritis. She rx'ed Methotrexate and out the door I went.
Man, this story is longer then I thought lol. So I will stop for now and continue in a bit. I don't wanna bore everyone to tears with my first post!
Okay, so here goes. I held off on the MTX for a few months because well quite frankly the stuff was just plain scary. During that time I developed a small patch on Psoriasis on my back about the size of a quarter. I knew then exactly what I had. PsA. I was very familiar with the disease because a friend/co-worker I know has had it for decades. So I went back to the doc and was told what I already knew. I had PsA.
So I started the MTX and everything was good. After about 6 weeks I was pain free. I continued the MTX for about a year and had no problems. Well, I had one problem lol. I LOVE beer. And to be quite honest I was not willing to completely stop drinking. I slowed down to maybe 10-12 beers a week and my Rhuemy said it shouldn't really be a problem as long as the blood work keeps coming back good. But after a year I just didn't feel it was safe any longer. I didn't want to ruin my liver. So right when I had decided to stop drinking I had to switch Rhuemy's due to new insurance. So I was in luck and my new doc wasn't a big fan of MTX anyway's.
So, he took me off MTX and started me on Sulfasalazine. He said it likely wouldn't work but he wanted to give it a shot so the insurance company wouldn't balk when he tried to switch me too a biological. So I tried it and of course it didn't work and made me sick as a dog.
Oh and I forgot to mention that right after stopping MTX my Psoriasis went nuts! I went from basically no Psoriasis to covered with plaques in a matter of weeks. It was/is awful. So after the Sulfa we tried Humira. I was on Humira for several months and it was great for the PsA but did nothing for my skin. So from there we switched to Remicade. It also worked great for probably 8 months. It helped the PsA and cleared my skin probably 80% or more. BUT then I had a reaction during one of my infusions and that was the end of that. So that brings me to current day's and this is where the story get's interesting.
So then my doc recommended Enbrel. So I got my Enbrel but decided to wait. I was feeling great, no pain and my skin was clear. So I figured I'd wait until things went south before starting the Enbrel. Not smart I'm sure, but I wanted to be med free as long as possible. So as of today, it's been nearly 9 months since my last Remicade infusion and guess what? NO PSA!!! It did not, has not came back at all! I can't figure out why but as of today I am completely pain free. If I didn't already know i had PsA I would have no idea I had arthritis at all. So I dunno. Maybe I was misdiagnosed? I can run, squat, lift weights, whatever. These are all things I could not do when my PsA was active.
Unfortunately, my skin has not been so fortunate, I'm covered in P. :( And that sucks. I need to go ahead and start the Enbrel and hope it knocks out the P.
So that's my story. Very sorry it was so long.
All I can say is Hi Chris...........when's the next installment? ;)
OMG, thank you!!!!! My doctor and I are also hoping for a remission, and I was starting to loose hope. Thank you so much.
Chris said:
Okay, so here goes. I held off on the MTX for a few months because well quite frankly the stuff was just plain scary. During that time I developed a small patch on Psoriasis on my back about the size of a quarter. I knew then exactly what I had. PsA. I was very familiar with the disease because a friend/co-worker I know has had it for decades. So I went back to the doc and was told what I already knew. I had PsA.
So I started the MTX and everything was good. After about 6 weeks I was pain free. I continued the MTX for about a year and had no problems. Well, I had one problem lol. I LOVE beer. And to be quite honest I was not willing to completely stop drinking. I slowed down to maybe 10-12 beers a week and my Rhuemy said it shouldn't really be a problem as long as the blood work keeps coming back good. But after a year I just didn't feel it was safe any longer. I didn't want to ruin my liver. So right when I had decided to stop drinking I had to switch Rhuemy's due to new insurance. So I was in luck and my new doc wasn't a big fan of MTX anyway's.
So, he took me off MTX and started me on Sulfasalazine. He said it likely wouldn't work but he wanted to give it a shot so the insurance company wouldn't balk when he tried to switch me too a biological. So I tried it and of course it didn't work and made me sick as a dog.
Oh and I forgot to mention that right after stopping MTX my Psoriasis went nuts! I went from basically no Psoriasis to covered with plaques in a matter of weeks. It was/is awful. So after the Sulfa we tried Humira. I was on Humira for several months and it was great for the PsA but did nothing for my skin. So from there we switched to Remicade. It also worked great for probably 8 months. It helped the PsA and cleared my skin probably 80% or more. BUT then I had a reaction during one of my infusions and that was the end of that. So that brings me to current day's and this is where the story get's interesting.
So then my doc recommended Enbrel. So I got my Enbrel but decided to wait. I was feeling great, no pain and my skin was clear. So I figured I'd wait until things went south before starting the Enbrel. Not smart I'm sure, but I wanted to be med free as long as possible. So as of today, it's been nearly 9 months since my last Remicade infusion and guess what? NO PSA!!! It did not, has not came back at all! I can't figure out why but as of today I am completely pain free. If I didn't already know i had PsA I would have no idea I had arthritis at all. So I dunno. Maybe I was misdiagnosed? I can run, squat, lift weights, whatever. These are all things I could not do when my PsA was active.
Unfortunately, my skin has not been so fortunate, I'm covered in P. :( And that sucks. I need to go ahead and start the Enbrel and hope it knocks out the P.
So that's my story. Very sorry it was so long.
Well Chris it certainly sounds like your joint issues with PsA are in remission, shame your skinisnt as well but ill keep my fingers crossed for you. And thank you for sharing your story …it does give us hope 
Hearing such positive posts, does give us hope for better days. Thanks for sharing. Good luck with your skin issued. That is a bummer.
It is so nice to hear ..I'm anxious starting on ENBREL today. Wish me luck
This is great to hear - we all hope for remission and it sounds like you're doing great!!!
I am glad for you. For me, I now appear to have more sausage fingers and toes. No, I am not growing extra toes. You know what I mean.
Wow..really glad to hear that you are PsA free, Chris...
Well, my reaction was just the opposite kinda. I was about half way done with the infusion when I felt hot and sweaty all of a sudden. The girl in the next chair said "man, your face is blood red!". Then they stopped the infusion and took my BP. It was thru the roof (200/115) and my pulse was 160. I was also very itchy and dizzy. Later that night I broke out into hives.
ilika said:
Chris -
What kind of a reaction did you have to the Remicade? I was doing great on Remicade myself (skin clearing, joints healing) until I had a reaction at my infusion. My flesh turned bright red and my blood pressure dropped so low no one is sure how I stayed conscious. What happened to you?
Even my sausage toes went away! I didn't even know that was possible. I thought once they went porky that was probably the way it was gonna be. But I am happy to report I am pork toe free these day's!
Gelita said:
I am glad for you. For me, I now appear to have more sausage fingers and toes. No, I am not growing extra toes. You know what I mean.
Hey Chris, It's great that you feel better.
I started out with P under a couple toe/finger nails at age 19. Over the next 7 years I would get minor swelling in my right big toe and right middle finger. Then, out of the blue (over night) my feet got so swollen and hurt so bad that a bed sheet felt like a Semi-truck parked on them! Long story short...hospital gave me prednisone, 3months I gained 50lbs, quit prednisone, went to Dermo Dr. and was put on Enbrel no questions asked....I think I was 27 by then. I went about 10 years after that with no major problems on Enbrel. I don't and never have had P with the exception of my nails. I'm 40 now and unfortunatly, the PSA has gotten worse over the past 3 years.
My point being...I failed to take my Enbrel on a regular basis due to insurance/moving a lot/blahblah... I smoke, I drink, I beat the crap out of myself... At the time I felt fine and now I'm paying for it! Don't think (like me) it's gone. The better you treat yourself and take your Enbrel(or whatever) the better you'll be in years from now.
Holy crap! I just saw you're in Middletown. I grew up in Centerville!
Awesome! I just went to Centerville last weekend for a Godfathers Pizza! As for the Enbrel, I'm not not taking it on regular basis, I'm not taking it at all. Once I start, I will take it weekly as rx'ed. I just hate the thought ya know. It's scary stuff. And w/ my PsA gone it makes me not wanna take it even more. BUT, I have no choice. No way I can live w/ this P. It's absurd. It's winter now so I'm all covered up and coping well/ But when the warm weather rolls around finally, the P will not do at all. I will do anthing to make it go away.
Funny now that I think about it. When the arthritis hit and I had hardly no P at all. I used to think to myself man I'd trade this arthritis for severe P any day of the week. Now that I have expierenced both, I would trade back in a heart beat. I'd choose the arthritis. This P has changed my life in ways I never thought possible. I felt young, full of ambition, strong, handsome, full of life, and looking forward to the future. I was an impressive man.
Now, literally in the blink of an eye...I feel old, fat, soft, have low self esteme, my skin is beyond ugly, and I'm riddled with anxiety....but, I will keep on keeping on!! Every day above the dirt is a good day...right???
Hi guys... cant believe we all live in the same area.... I live in Fort Madison... I just started Enbrel about 7 weeks ago...
I cannot believe the difference it has made in my life... I feel like a different person... of course I still have quite a few issues with the arthritis.. but nothing like the pain I had before... it was so excruciating... to the point I couldn't sleep, lay down, stand, sit.. anything without crying... I do also have Fibromyalgia... but I take Lyrica with that.. I just wish someday I could get off of the ... naproxen.... because I want to save my liver.. lol...
I just hope the effects of the Enbrel never wears off...
Huggs
Karen