Symptoms & Age

[amy.r.kahl]

As I read the forums on here I noticed some of you say you have had this since your 20s or 10-20 years. My question is has your flare ups gone down with age? Or is it you've finally just found the right treatment? I've only been dealing with for almost 3 years this June and really started accepting I am sick within the past 6 months. It took over 9 months to diagnose and I'm on my third type of chemotherapy. And I'm guessing I'm just secretly hoping it will disappear as quickly as it came into life. I know I've always had it but I lived a long time without knowing it. I guess I'm asking if I will ever have that pleasure of not having to look over my shoulder again ? I just miss my innocence. I feel like my life was taken from me and I was transformed into a lab rat. I go to therapy but I feel no one understands my loss.


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[im so blessed]

I have had it for 13 years now. Since i was 16. I dont know ur age but for me i say i never couldve accepted this disease if it had come later in life. There is something about being dxed so young that it just becomes who you are. Like THIS is the only real me i no. My flares are pretty consistently every other year. Im sorry i dont have much encouragement. I wish this disease was a little kinder!

[Pete]

I'm 68 now and have had the disease for four years. I had a flare about a year after diagnosis that was a doozy. I think the flare was coupled with an adverse reation to immuran and led to pneumonia. I was sicker with the flare that I was a disease onset. Having said that, I had a minor flare in August-October 2013 that I initially wrote off to aging because the symptoms were aching joints. The giveaway was that the pain moved from one joint to another - a couple of days pain free, then another would act up. I had two infusions of rituximab in October 2013, and within two months, everything had cleared up.

To answer your question, I'm not sure age has anything to do with the frequency or severity of flares. I believe it's a function of compliance with doctors' orders, medications, and paying closer attention to your body. I'm fortunate. I lead a life that's very similar to what I had before disease onset. But, I do look over my shoulder when I notice anything odd about my body...