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Anyone have ET and on Pegasys instead of Hydroxyurea?
Blood Cancers & Disorders | Last Active: Oct 16 7:24pm | Replies (6)Comment receiving replies
Hello @loribmt - I have labs every 4 weeks. I am going tomorrow so we'll see what's up. There have been times over the past 2 years when I have felt great for long periods of time but my blood work didn't look so good, so it's a little disheartening to not feel good and my blood says I should be ok. I expected it to take a while to get the balance right between strong enough to kill the bad stuff in my blood and not too strong that the side effects made me miserable. I'm sure we'll get there. The hard part is like I've seen on other posts - the doctors seem to think with ET that our symptoms should go away once we're on meds and I felt kinda crazy when they didn't.
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@chocolategirl
Hi there chocolategirl, hang in there. It is very hard when the docs think that your symptoms should just go away once you're on meds. It just is. When we feel bad, we are looking to people we trust to validate us and accept what we are saying about how we are feeling as truth, not something to be doubted. Unfortunately, whether these people are docs or family members, they often fail us in this regard. They either don't get it, or they are misinformed. That does not mean they are 'bad'. They just don't know. So, it comes down to trusting what you are feeling and taking that into account. Remember, everyone is different. Even if 99 percent of the people did well on a drug, does not mean that you will or have to as well. Docs who make you think that your symptoms 'should' be gone once you are taking the drug that they prescribe, so if you are still feeling them, well, what does that say about you???? and then you feel gaslighted ---think again. No better time to start validating your own feelings then the present. Your feelings don't lie. You are feeling what you are feeling.