Long term medication funds

Update posted by Alex chian hon Choo On Sep 06, 2016

Hi everyone. It's been 5 days since I launched this drive and I am thankful for all the support and encouragement I have received thus far. It will go a long way in helping me to deal with my condition.

Now, some of you have expressed concern to my immediate well-being and my fiancee has suggested that I share more about my condition, as well as keeping all of you updated. I also hope that you get a more thorough understanding as to what it means for people who are afflicted by this illness.

Ankylosing spondilytis (AS) is a chronic inflammatory autoimmune disease that affects the axial skeleton. I first started to feel pain in my lower back area about 6 years ago. At first, I dismissed the pain as my usual sports injury, as some of you may know, I was an avid badminton player. Thinking that it will go away with rest, I took no notice of it. Bad idea. As the days went by, the pain got worst, especially in the mornings when I wake up, not that I had much sleep anyway. It started to affect my daily routine, the pain made me grumpy and hot tempered and visually I became a hunchback. I did not get officially diagnosed until a year later in part because of my own delay, but also because it is hard to diagnose in the first place (I had to see 3 specialists). When the news finally sunk in, I went through a rough patch of depression and self loathing culminating in a deep sense of anger and dissapointment. Fortunately, there was always someone by my side, supporting me and listening to me. She is my fiancee today.

Part and parcel of dealing with AS is regular pain medication and exercise. Being a former athlete, you'd think that exercising would be my forte, but to be honest, I was quite lax in that respect. It was precisely because I was an athlete that was made it so hard. To be only able to do simple stretches and back strengthening exercises was agonizing to say the least. The routines that I was taught by a physiotherapist were what I would usually do before I started to actually play badminton. That was my first casualty.

As for medication, i am regularly taking celebrex. All I can say is the drug is a lifesaver. But as with all drugs, the better they are, the deeper they dig into your wallets. It has gotten better the past half year as generics has started to flood the market which I guess is due to the expiry of the patent holder by Pfizer. I have also slowly felt the reducing effects of the drug as I have been gradually taking increasing dosages to deal with the pain. I started at 50mg, and I am now at 200mg. Occasionally, on really bad days, I turn to tramadol, which is a kind of opioid. I don't take tramadol regularly because of its strong tendency to cause addiction. But as it stands, you can.say I am reliant on these drugs to keep my days going. My second casualty.

I mentioned a new treatment in my first post. To be exact, it's called anti-tnf drugs. While I don't understand fully the science behind it, doctors are confident that this new treatment while still not a cure, will significantly improve my standard of living and reduce my usage of regular painkillers, if it works. Of course, there is a chance that the drug will simply not work(apparently there are documented cases where the efficacy was not as reported), will cause other complications (secondary infections such as TB, or other bacterial/viral infections). And of course, it costs through the roof. Under Hong Kong's public medical scheme, anti-tnf drugs are classified as self-financed items, for obvious reasons. The treatment is also not covered by insurance because it is an outpatient procedure.

Some time last year, I took the treatment 3 times. Against all odds, each dose lasted for a month on average before the effects started to wear off. Unfortunately, I could not continue the treatment because the funds had to be channeled to a more urgent need, which consequently dried it up. I have struggled for some time before finally agreeing to set up this drive, and hopefully, you now have a stronger understanding of my condition. The fund will help me in paying for my long term medication needs, and potentially enable me to seek this treatment option again.

Thank you all once again. I'd also appreciate it if you could share the news by linking this page.

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