So my name is Jennifer and here goes my story! I was first diagnosed with an autoimmune condition at 15. The first thing that struck was Posterior Uveitis. It was really bad and i almost lost my central vision in my left eye. After all 3 of my eye specialists got that under control i followed up with a rheumatologist as they said this could be the first symptom of a condition to follow. Then came the diagnosis of Juvenile Spondyloarthritis. I had a few frustrating years of not getting a clear diagnosis even though i had been seen by the head rheum of Schneider’s Children’s Hospital and all. I was put on methotrexate and prednisone and various not so fun meds. Eventually i went off them all because i was a kid and convinced i didnt need them and i was going to be fine and i didnt like how sick they made me. Well, turned out not so fine. At 17-18 i started seeing a new rheumatologist who quickly diagnosed me with Ankylosing Spondylitis and i started treatment. He set me up on a biologic and methotrexate. I left that rheum for my current doctor and for about another two years i went on and off treatments that never worked so i once again gave up. From 18 to maybe 22ish i felt as though i tried everything never got any relief. I had tried what seemed like all the biologics with methotrexate and i dont even remember what else at this point.
Without any treatment i just put up with the pain as the flares came and went until it got unbearable and my whole life changed. I am currently 25 and about two years ago the more severe symptoms started. I used to work two jobs (one bartending & one managing a corp restaurant) and i loved being efficient and productive, i lived for it. I was always moving! Now i work 3 day shifts a week as a bartender and it seems to be too much. When the symptoms got REALLY bad i went back to my rheum and she again started me on biologics and methotrexate. Upped the methotrexate till she couldnt put me on a higher dose and eventually switched me off the Simponi and started me on Remicade infusions. I hadnt seen and progress and to top it off i was having a weird reaction where when i had my infusions (i got them once a month) my ammonia levels and liver enzymes would spike and i would be admitted for a few days till the leveled back out. After about 6 months she decided that was it she didnt feel it was safe for me to continue especially without any response to the remicade. She then decided that IVIG treatment may be the way to go. Came off the remicade and methotrexate and waited and WAITED for my insurance company to approve the Gamunex home infusion therapy. During this waiting period more and more symptoms i hadnt experienced started to show up. Thats when the diagnosis of Psoriatic Arthritis came. My pain is mostly located on the right side of my body and i have sausage fingers and toes and allllll that fun stuff. I dont sleep much. My feet ache like i dont even want to touch them to the floor. My right hip, the thoracic area of my spine, sacroiliac area are really the most excruciating, sometimes i cant walk. My right elbow and shoulder pick their days too. Im sure i dont have to list everything, as your all suffering from this disease too so im sure you get it! Finally after 3 MONTHS of no treatment and being on the edge of how can i live my insurance approved it. So, this past week i had my 3 day infusion of the gamunex-c and on day 3 i wound up with aseptic meningitis as a result. I was taken to the hospital and obviously got through it, not without being scarred for life…starting about a week ago i began Otezla and yesterday Stelara… so the hamster wheel keeps turning… i have tons of support in my family, boyfriend, friends and honestly i dont struggle to pay bills my boyfriend is very good to me and takes care of everything and supports me for the most part. But im emotionally spent and im frustrated and angry…scared…over it… you name it i feel it. I guess im looking to find some friends who really know what im going through rather than those trying to support me from the outside looking in on what it “looks” like im going through. Ive begun to HATE that word btw. Im curious about alot of things like maybe holistic things… everything really! Any and all information and opinions would be super appreciated! Thanks for reading/listening!
Hi Jennyfaa and welcome!
Firstly, what word do you hate? I couldn’t work it out … I’m a bit scared I might use it lol!
Secondly, oh wow, oh wow. You-have-been-through-a-lot. And obviously you still are up against it. What I love is that you are still crystal clear about the good things in your life, despite the battle with PsA.
So Otezla and Stelara eh? Oh let’s hope they really make a difference, that would be wonderful.
It’s great you’ve joined us, yep, we’re in there with you.
Hey Sybil! Thank you for such a quick response! Hah the word i hate is “look” as in “oh you dont look sick”…
Thank for you saying that i seem positive still! I try to be, like you said i still have a far way to go but i do try and keep a positive mind because to be hoenst i dont know how id survive if i didnt! My grandma always told me if you dont laugh you will cry and she was so right! I always keep that in the back of my mind and keep moving forward hoping for a better day! Dont get me wrong i have my moments where i break down and cry myself to sleep and complain and get frustrated but i do try to keep my chin up because even though im suffering all the time i have a pretty good life outside of this disease!
I am still super hopeful that the stelara and otezla will help, i figure somehing has to give eventually right? Thank you for welcoming me here! Im definitely excited to keep in contact with people who get what im going through!
Hi Jennifer (nice name btw 
) and welcome.
It sure sounds like you have been through the wringer!
I find it is really nice to have people who understand here - regardless of how supportive family and friends are, it can still feel really, well, lonely, without people who have been through and are going through some of what you face, so you have come to the right place!
For the holistic stuff, make sure you look at the complementary threads - whilst you need to persist with the meds to get the disease under control, most of us wouldn’t cope without all the other little things we do to manage it. My personal favorites are well designed exercise and heat and cold packs - especially wheat (and I have a dodgy tummy that we often get with spondylarthopies, so for me the right food - which in my case includes nice, high quality chocolate 
).
It’s 4.45 am here, and I’ve gotta go now because I’ve got to start my shift soon, but I just wanted to say welcome!
Hi Jennyfaaa, and welcome–glad you found this site. Your hope and optimism are great and it’s so nice to hear you have such supportive people surrounding you! Good advice from your grandma–it’s nice her message stays with you–sometimes it’s those little reminders of the love people have or had for you and you for them that makes the challenges in life a little more bearable.
You will find friendship and understanding here–we know it’s not at all how we “look” on the outside–if only our disease would show how we “look” on the inside! But then, maybe we wouldn’t really want to see “IT” or have others see it, either!
HinJennifer, so sorry it’s been such a tough road…i so hope the meds work. Sometimes its so hard to get the right combo of meds. I hope these ones are your magic combo
Thanks for the feedback everyone! Have any of you taken the otezla or stelara? Im curious how long its going to take to kick in or how soon results can be possible… i feel like i wake up ever day lately and something hurts where it didnt before. Have any of you had success with diet? My rheum told me i should not have ANY carbs, refined sugars, processed foods… i have no problem eliminating those in hope itll help im just curious what i CAN eat hah…seems like those three things are in everythinggggggg
I haven’t tried Oztela or Stelara, but other biologics have been very quick for me (significant improvement in <4 weeks), and many others say similar.
I think not eating ANY carbs is a bit extreme (after all, it is what are bodies use for fuel), so perhaps if you minimize added sugar and highly processed carbs first, then work your way up to what you are comfortable with, that might be a better strategy.
You certainly need to work with your Rheumy, but I haven’t so far seen any real evidence on the carb debate, and most Rheumy’s either don’t weigh in on it, or are ambivalent about it.
I think it’s also individual. I get very sick without carbs (my body doesn’t digest most fats or proteins well at all), though some people swear by going gluten free, or grain free, for example. With diet it seems there is not a good one-size-fits-all (or else we’d all be doing it!), so do the trial and error for yourself and see what works.
I haven’t heard too many other cases like me, but for example, I can eat carbs till the cows come home (though they are usually whole grains), but need to be very cautious of red meat protein and saturated fats. (And capsaicin - found in the skin of capsicums).
There’s very few of us who wouldn’t benefit from reducing over-processed foods with lots of preservatives though!
Hi Jennifer, I’m new here too and I can’t imagine what you’ve been through. It sounds like you just started a new round of medication, and hope that Otezla and Stelara work out for you! I personally am about to start Enbrel for the first time so I don’t really have much to share about that. I too have really good support system at home, an amazing husband, my mom, in laws. I came here specifically because I feel very alone going through PsA. We look fine, therefore we should be fine right? Anyway, I also recently started a modified vegan diet. I definitely agree almost everything in the grocery store is pretty much processed or high in sugar. However, I think baby steps are key. Eventually we will get there! lol.
Hi @Jennyfaaa
I take Otelza and just recently switched to Stelara. Otezla took 4-6 weeks before I saw any results. Until then I just, let’s say, “appreciated” the side effects (toot toot!). Stelara is taken on week zero, week four then every twelve weeks. I took my second shot a couple of weeks ago. I do think it is beginning to take hold but I’m not completely certain yet. I’m still not dancing all night or jogging to work in the morning. But I’m sleeping more soundly (which means I am experiencing less hip and leg pain at night) and my joints are appreciably less swollen, particularly my fingers and toes.
So glad to hear you have a crowd of supporters in your corner. It can make all the difference in the world. Hang tough! 