Prognosis and onset - are they linked?

Hi everyone,

Just want to hear about the experience of everyone with regard to their onset.
For example, was your onset slow and insidious, with a bit of stiffness in one or two joints gradually (over years) increasing in intensity and number of joints? Or acute, with severe pain starting quickly and spreading to most joints within a couple of months?
At what stage did you get DMARDS?
Where are you now? How has it changed your life over the last ?? years?

Hi JenAus, I am 58 and this all started a few years ago with a pain and here a pain there, I attributed it all to getting older. I had pains in my wrists and fingers and was diagnosed with carpul tunnel and had the surgery. It helped some, but then I just started hurting in different spots like my arms, elbows, shoulders, hips, the arch on my left foot and my left big toe. Eventually I was sent to RH who said I had fibromyalgia and then several visits later PSA. It is a very frustrating disease. I think stress plays a major role in this for me. I started methotrexate four months ago with prednisone and my pain got so bad I had to take a medical leave from work. I started Enbrell and was feeling much better after about three weeks. I had a very stressful situation come up the other day and had a bad flare up the very next day. I have a question, I would like to see what other answers you get, how do I view them? Good luck! Pam

Well my PsA came on very quickly, I begain having lower back pain and some stiffness in the mornings last June which I contributed to out very old mattress, then in August my index finger on my right hand swelled up and got stiff, at the same time I started to notice my back pain getting worse, then the soles of my feet got very tender and sore, then I started noticing my large toenails changing, then my middle finger on my right hand, then my neck and entire back and the morning stiffness was horrible all of this within about a week then my knee started to swell and become extremlly sore as well as my jaw and I began getting more and more skin legions so by early September I was in complete agony and pain, my whole body hurt I could barely walk or sleep and I knew something was seriously wrong. I was diagnosed on October 18th and started methotrexate that same day, I have been taking 8 methotrexate pills a week for the last 3 months and they have been really really hard months my condition hasnt become much better at all my jaw, back and knee are worse and now my right foot and toes are swollen all the time. But because I had so few results I began Humira yesterday and I am really looking forward to seeing results from that I am praying that Humira is my answer to getting better. Goodluck with everything!

Hi JenAus,

The onset of PsA was very subtle for me and began almost 10 years ago, when I was 36. First thing that cropped up was what my doctor thought was a fungal infection under my thumbnail. Nothing else noticeable happened until I was about 40, when I developed tendonitis in my achilles tendon, then my elbow and forearm. At 42 I started getting pain, stiffness and burning in my fingers on both hands. After 2 years of that, with the pain and stiffness getting progressively worse, I got a referral to a rheumatologist. The first thing he looked at was my fingernails and sure enough, there were a bunch of pits in my nails, as well as the one semi-deformed thumbnail. I had noticed the pits before but never really paid any attention to them but that was what led to the diagnosis of PsA. I should note that I've never had any skin lesions. I did spend the first year of diagnosis in denial, telling the rheumy that it wasn't bad enough for me to want to take drugs, but by Nov. 2010, I finally accepted the diagnosis and started methotrexate. After 8 months on MTX with little relief, I was put on Enbrel. It has helped but the disease is still progressing. I now have PsA in both my ankles, both wrists and have constant sacroiliitis. For many years, I took lots of ibuprofen, almost more of a habit than a need, which I think blunted some of the pain. But because of that over-use of ibuprofen, my stomach/intestines can't handle it, which is unfortunate because it is the one thing that always helped the pain. I do take Tylenol now which helps only slightly and frankly, don't find the Tramadol that effective either.

So *really* long story short - it has been an odd, slow journey to diagnosis, but compared with some folks that I've talked with, I've gotten off pretty easy so far. I've had to give up some things I love, like playing darts, and have figured out ways to continue doing other things that I love, like cooking (I use my food processor a lot more now than I ever did). Someone in this group said something along the lines of "It is something new every day and you constantly have to make adjustments". I find that *so* true. And I also find the folks here so helpful in making those adjustments!



Hi Pam, I really appreciate your feedback. Seeing responses is usually straightforward, let me know if you have any problems.

Hi, really appreciate you sharing your story. I had a number of minor symptoms that may or may not have been associated within the year before; but the speed of the joint involvement and pain since definite onset has been breathtaking (literally at times); 2 months from zero to “the only major joint group that doesn’t hurt is my jaw” I must admit that it can be pretty daunting, but it’s great to hear how others do :slight_smile:

Hi Andrea, I’m pleased to hear that the disease progression appeared not to be too quick for you, though it is always hard not to know for how long things happen :slight_smile:

I had Psorasis for 25 years before any PA symptoms showed up. I was diagnosed because of a swollen knee and hand joint hurting- last March-right after a traumatic experience. I took Nabumetone for a few months and the swelling went away. I had to stop that med. tho cause it was hurting my stomach and I have celebrex now, which is not helping me. I am having my a second flare up with my knee as I write this adn again, just went thru a stressful expereince. My doc wants me to try steroids to stop the flare up for a little bit and it if comes back, he wants me to try Methotrexate and I am totally scared to try a DMARD. I am terrified to shut down my immune system. I have a discussion up about that med, actually. My life has totally changed. It kinda sux now, to be honest with you. I am 45, I'm still young and cant walk today-in a few weeks maybe, but not today. I went into a remission from about July to now. Just tiny, tiny flare ups. I stopped eating dairy, and started meditating. It helped a lot. Had to give all the anger away to a higher power. I start the steroids tomorrow. We'll see. Good health to you :)

my onset was slow. I have had psoriasis since I was 18. The first time I noticed any stiffness in my joints was when I was 22. I used to joke about how it had to be arthritis cause it was just in my knees. Then about 5 years ago all the joints in my body swelled up. I woke up one morning and I could not move cause I was so swollen and stiff. When I went to the dr she said I had tick disease. We did a Lyme test and that was negative so she said it was just some kind of tick born illness. Two months later it happened again and they decided it was reoccurring tick disease. All the while my psoriasis was getting worse and spreading. They also decided I was depressed and that was why I was in so much pain even when I was not swollen. About two years ago I moved to Tulsa. 6 months later I had a major flare in my knees. I could not walk and my shoulders swelled up real bad. I was told again that I was depressed. Back in August was the first time I was told that maybe it was something else. I went to see a new dr and she recommended me to the rheumy that I now see. I started treatment on November but so far I do not feel like it is helping that much. On a side note auto immune runs rampent in my family. Every female member has some form of it and up until October we all thought I was the one who escaped it.

Hi, I started at around the age of 14 with arthritis then at age 22 nail problems, then suddenly at the same age had a trama and that is when my first patch came, which was also a year after having my first child, My first major flare was one year after I had my twins, I was 26, I could not walk much, getting up from a chair was pain, and getting out of a water bed(what I had back then at the time) was impossible, my husband would have to get me out before he would leave for work, I remember some days my hands hurt so much and were so week that I used my teeth to undo my childrens diapers. That major 1st flare lasted about 6 months. I had already been dignosed, but had not had any major flares until then. Then in 2001, I was diagnosed with the fybromyagia !!!! Now I am 48 and still standing, but it is a daily struggle and without prayer and faith, I would be nowhere ! I have good days and bad, but I have a great husband and wonderful children, who make living with this worth the effort. When I am having a bad day one of my adult children will just do something crazy to make me forget my problems. time I was at a walmart with my oldest son who at the time was about 19, now going on 27. He got bored really fast because mom was in the ladies department, so like a kid he threw himself on the ground and started to have a hissy fit (silly one that is) right in the aile, I burst out laughing so hard it hurt, my son has always told me, be silly or loud mom and look at peoples faces, they go into shock, it is soooo funny and he is right, so now I try to laugh more then I cry! My kids have taught me that life is to short and people to outward bound! Amazing what we can learn from our children.

I first noticed weakness, pain, and stiffness in my knees, hands, wrists, and fingers about 15 or twenty years ago. My lifes work has been extremely strenuous so I was in pain all my life as a consequence of hard work. But it finally dawned on me that my pains and stiffness weren't normal. Because of my work my Dr. treated me for years for osteoarthritis. A year ago things got so bad that I was no longer able to do my work. It was about then that my research took me to PsA. I convinced my Dr. to refer me to a Rheumotologist and he feels that I have had PsA for many years. I feel that my active lifestyle may have slowed the progression of the disease. The last several years were pure hell to get up every day and go bust my butt. I will be 60 in a few days, so I feel blessed to have made it this far while leading a fairly normal life.

I’ve had minor psoriasis most of my life (I’m 48). I’ve had pain and stiffness in my joints for about 10 years and was always told it was osteoarthritis. My mother has severe Rheumatoid so I always feared that. My rheumy finally called it PsA when I was so exhausted and miserable.

Mine was slow and insidious as a kid. Now that they can do MRIs to see inflammation that isn't obvious to the doctor, I would have been one of those kids labeled JIA that turns into PsA for some people. I had a couple of very small patches of Ps in middle school, but nobody realized that it meant anything. My dad had the rash severely, so it wasn't surprising that I had the occasional patch the size of a quarter. When I was finally correctly diagnosed (one dr had tried to treat me for Lupus, and others had tried to treat the endocrine system since I had female probs related to the inflammatory symptoms), it was a fairly easy diagnosis for the rheumy b/c I had finally had a big flare of textbook symptoms while on my honeymoon. Not only was it the stress, but we were married in December and took a honeymoon to NY city...cold and wet.

I started my first DMARD after a year of NSaids that helped but not enough. The Sulfasalazine was intolerable b/c of side-effects for me, so my dr. started me on this great "new" therapy called Enbrel that had just been approved for PsA! (That tells you how long ago it was. 13 years.)

I have had drs. who swore that I had fibro myalgia also, and those who found reasons for the "fibro" pains and symptoms. I can't decide if I really have fibro or if I just always have unrecognized symptoms that they want to throw into that category. I'm not sure it matters as long as we are working to treat them. I've learned that the best thing you can do is learn. The fact that you have looked at the criteria for diagnosis says that you are arming yourself with info. Keep going! The years when I let that knowledge slip and become out of date, which happens quickly with the rate of research right now, were the ones when I felt the most hopeless. The years when I kept learning about it were the ones when I felt some control over my disease even when we were searching for treatments that worked well.

I've had psoriasis most of my life. Nothing too bothersome. I've had joint pain most of my life. The kind of joint pain that causes a child to writhe in bed and cry all night. It was on and off ... doctors chalked it up to growing pains. I had surgery for chondromalacia patella, both knees, when I was 16 after five years of knee pain and other joint pain and stiffness. For years I was told by doctors that it was all in my mind, or that I had a minor sprain, or tendonitis, carpal tunnel, or any number of things. At one point I could barely walk, but was told there was nothing wrong with me. Then I got pregnant and all the joint pain and stiffness vanished, only to return within weeks of giving birth. Then I'd get pregnant again, and feel better - give birth, pain and stiffness would return. After five kids, my husband and I decided we were done. The pain and stiffness returned. A few weeks before my youngest daughter's third birthday, I woke up with an ankle that barely moved. I went to the doctor, who was (finally) concerned enough to refer me to a rheumy. The first available appointment was in April - it was February. By the time I got to the rheumy I was in extreme pain and could barely manage to walk. The rheumy examined me and asked how I got to the office/exam room. I replied that I drove myself and walked in. His response was, "You can walk???" He couldn't believe I was walking on ankles and feet as bad as they were. After tests and x-rays and such, we now know I have arthritis in my feet, ankles, knees, hips, lower back, neck, wrists, hands and fingers and most likely in my elbows and my jaw, which we didn't x-ray. I also have partial fusion of my sacroiliac joints, worse on the left side. Eventually I'll get an MRI or whatever of my neck and spine to see what's fused there, as we think I have major damage throughout. It's been a rough year - I now use 2 canes or a wheelchair to get around. So, although we assume I've had PsA most of my life, my recent flare has been the worst of it, and my PsA has gotten much more aggressive. My rheumy wants me on Enbrel (which I'm on) and high dose Mtx, but I have liver problems, so the mtx is out for now. I've been on Enbrel for seven weeks and have some improvement, but my SI joint is KILLING me and making it very hard to get around, so I'm going to call the rheumy on Monday and see if there's anything that can be done. I have anywhere from five to ten kids in my care every day, so mobility is a must. :)