Denise Ladelia, 37
Diagnosed at: 19
Currently taking: Remicade infusions every six weeks
The backstory: Denise has had severe psoriasis since she was a teenager. The arthritis started in her right knee and spread quickly.
A word of warning: The first drug that works may not work forever.
A word of encouragement: Going from one drug to the next isn’t always a bad thing.
In her own words:
I went to work one day when I was 19 and my knee was hurting and felt like it was filling up with fluid. I had it drained, then went to my general practitioner, who remembered I’d had psoriasis when I was 15 and [noticed] some pitting in my nails.
I went to a rheumatologist who diagnosed [psoriatic arthritis] right away. At that time, we knew nothing about psoriatic arthritis. I went back to my dermatologist and asked why he never mentioned this to me. He said, “If I told everyone who had joints ache about psoriatic arthritis, everyone would think they had it.” That made me pretty mad.
It was in remission until I was 25. Then one day I woke up and could barely stand up and my hands were locked. The arthritis came back and had moved to different joints.
I started methotrexate pills, then injections. That worked for a while. Two years ago, though, I woke up one morning and felt like I’d been hit by a car. I couldn’t move at first and everything hurt. I eventually [saw] Dr. [Christopher] Ritchlin, who put me on Remicade. Within a couple of weeks, I noticed a huge difference in the skin condition, which is 99 percent fine now. A large portion of the arthritis is gone, too.
As great as the Remicade has been, I’m afraid I’m building up a tolerance to it. At first I was getting infusions every eight weeks. Now it’s every six weeks, and by week five or so the symptoms are getting pretty bad.
We’ll try the next drug when this one doesn’t work anymore. It’s frustrating, but there are people out there who have it worse than I do. It’s all about perspective.
I started having joint pain about 2 months ago. It started in my hand and wrist and them moved around until from my waist down I hurt so bad, I knew something was wrong. I went to the rheumatologist who ruled out ,MS, Lupus, Lyme's (we live in WI), Sorgjens, rheumatoid arthritis, and fibromyalgia. Whew! Anyway I am going to start on Humira and am worried about the side effects. He says not to start on Methotrexate because it's not approved by the FDA???? Any advice on Humira?
I work full-time, part-time, go to school, and have 4 kids and a husband. My life is rush, rush, rush and there is not time to relax. I fear if I do nothing I may end up in a wheelchair. My family is not supportive at all because I have been complaining of so many aches and pains over the last years due to my other problems that noone cares any more :( Noone understands the pain I am in because I just keep on going everyday because I have to. What else can you do right?
Anyway I have to stay positive so I can be treated and hope that god helps me through all of this and at least now I have answers.
I'm not sure where in CT you live but the New Canaan YMCA has an arthritis aquatic exercise class. Most YMCA's that have pools offer aquatic exercise. Instructors should welcome you to join their class even if you move more slowly. Finding a convenient class time can be a challenge but keep looking. Check for adult lap times. Frequently 1 lane is dedicated to waterwalking/aqua exercise. I am an aquatic exercise instructor and have taught the arthritis class. Best wishes.
The problem of meds stopping their usefulness is well known to me. I've been on methotrexate, methotrexate and embrel, methotrexate and humira, and now methotrexate and leflunomide, and I'm not sure about the leflunomide. Never have been able to give up the methotrexate.
Wish the arthritis foundation would be active in my state. Can't find an arthritis water class (despite the pain I work full time days)in Connecticut. Folks assume that if your arthritis is that bad you aren't working, or that only seniors, who can go to class at 10 or 11 am, need water classes. I think there is one arthritis org group in Rocky Hill. Too far for someone who works full time, has a family, and is a part time grad student.
My joint pain started a couple of years later, but there is a history of OA in my family, so i chalked it up to that. It wasn't until I found a new dermatologist in 2007 that anyone suggested Psoriatic Arthritis. I was diagnosed at 30 years old, but I was having symptoms for about 5 years before that. Fatigue, stiffness, aching pain in my hands, feet, ankles, knees, etc.
She put me first on Methotrexate (+folic acid). Then added Enbrel, which I took for about 1 1/2 yrs, but never got significant relief. I have been on Simponi for about 9 months now and still don't have significant relief, but am much better than when I first went to see my Rheum and I don't have as much fatigue as I did before.
My worry is that it's summer now and I'm feeling pretty good, but I so dread the rainy season and the cold! I love Cincinnati, but we should all live in a climate controlled environment year round. LOL.
I have 2 kids, a husband, 2 cats and a dog and I'm in nursing school. This took a lot of courage for me to go back and attempt to finish nursing school with PSA, but that has been my plan since before I was diagnosed. I know it's hard on me, my kids and my husband because he picks up the slack for me when I'm feeling bad, but it's worth it in the end for everyone. I am trusting God to guide me through it. I don't want to let this condition rule my life. And I don't want my children to think their mother is letting her PSA defeat her dreams. I hope my body cooperates with me during the next three years of school. I just want to prove that you can still enjoy life and pursue your dreams despite this awful condition.
I did find it interesting that your knees are what bothered you most at first...me too(along with my hands). I went to the podiatrist the other day and he was inquiring about my PSA and said it might not be that because it usually only affects the small joints like hands and feet...Usually doesn't usually apply to PSA sufferers thought, does it? It can attack anything it wants to.
Good luck to you. I hope your medication keeps giving you relief. I am feeling much the same that I am going to have to switch to something else this winter too. Ugh. Such is the life of a PSA sufferer though. God gives us strength. Remember that.
Thanks for sharing your story.
Unless someone actually suffers from inflammatory arthritis I think it's very hard to relate. Shame on that dermatologist and good for you for forging ahead and finding the right doctor. You have a wonderful can-do attitude!
Wishing you wellness!
i explaned to your mom that "ginger" is good for artheritis,nerves and gas!!! try it, it comes at the gracery store in small bags( about 8 pieces to a bag and is only $3.00 or close to that.it is like eating candy and good..........try it!!! i am sorry that you have that lousey arther-idis, aunt carol has it bad too, i have told her about ginger and she says her dr is doing a good job, of course he only has two houses in each state ha ha
i hope this makes you feel better and write to me so i know how you are doing and give the big girl a kiss for me
i love you uncle rick
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