Originally Posted by
me2
What is more certain is that WG untreated is very much worse than the side effects of the drugs. It is easy choice really. The statistics for untreated WG are terrible. The statistics for todays modern treatment of WG are very, very good. A person can lead a normal and productive life on these medications. There may be complications but then someone without WG and no medications can have complications with their health too. That's just life for everyone.
Quoted for truth. The side effects of the medications can be a challenge, but (at least in my case) I don't have an alternative if I want to stay alive. Also, as Me2 mentioned, many side effects are temporary. For example, I have had to take high doses of prednisone (a steroid that many of us take) for a short time, and then taper off. As I start to take lower doses of prednisone, the side effects disappear--I got to a dosage last month where I didn't notice any side effects at all anymore.
In spite of these side effects, I've been able to continue to work full time, go swimming and hiking, and in general enjoy my life. It's not the same life as I lived pre-diagnosis, but it's still a good one. I was diagnosed less than a year ago and am still getting used to my "new normal"--it takes time to wrap your head around the disease and how it affects you individually.
Best of luck to the two of you going forward! It's great that he has a supportive partner in this.
"Drink your tea slowly and reverently, as if it is the axis on which the whole earth revolves—slowly, evenly, without rushing toward the future. Live the actual moment. Only this actual moment is life." -Thich Nhat Hanh
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