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1. I've tried Dexamethasone in Day 1 of my treatment, but it didn't have any impact on my platelets count, it had side effect on my liver after a month, so my doctor stop it immediately.weirdjack wrote: I'm simply trying to encourage you to read up on ITP treatments, to better understand what your doctor is giving you and the alternatives which are currently available.
You keep asking us what drug will put you into remission....
If anyone on the planet knew the answer to that question, we'd all be taking that drug and we'd all be in remission.
The unpleasant truth is, we are all different and we all respond to treatments differently. IIRC; I've never had a count over 62k on 75mg of Promacta, yet others have zoomed to 900k on 12.5mg (which is a tad dangerous IMO).
Revolade/Promacta is a very good drug...as is Nplate. But neither work the same for everyone....and neither is 'designed' to do anything other than maintain a count of around 50k. This is in the manufacturer's information. I would encourage you to read their information...especially if you are considering being treated with one or the other.
It also can take a little time to determine what drug works or does not work. That determination can become nearly impossible when some doctors insist on prescribing cocktails of several drugs at once.
It appears that there are some fairly standard treatments that you have not tried yet. Have you used Dexamethasone for a quick platelet boost? It works for quite a number of us as an alternative to IVIG and keeps us from those 'hospital trips' when counts get really low.
Are you having bad symptoms? Or are you okay with lower counts? A lot of us live well with counts in the 10k-30k range. Personally, I would have no reason to go to the hospital with a count of 16k. My count two weeks ago was 19k....I'm fine with that, so is my hematologist.
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DeeDee Marie wrote: You didn't mention how your symptoms were? Do you have signs of bleeding or blood blisters? Do you get bruising and petachie--not just a couple but more obvious?
These are more of the symptoms that I would worry about. When I get to the point that I don't have that many symptoms, then I start to relaxe a little more.
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Sandi, I have bleeding when I brushed my teeth and having several unknown injuries in my lips when my platelet count is 3Sandi wrote: How much bleeding in your mouth? Was it just when you brushed your teeth or was it more than that?
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Although it wasn't a serious bleeding, it really goes on for a long time to stop bleeding (>15 mins)Sandi wrote: Bleeding after brushing teeth isn't serious bleeding unless it goes on for a long time and there is a lot of blood.
Promacta takes some time to work....a few weeks usually. The dots (petechiae) can be a sign of low platelets but I wouldn't worry about a few.
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Thanks, Sandi.Sandi wrote: You should not be taking Tranexamic acid with counts that high. I'd call the doctor and really question that. Tranexamic acid helps blood clot. Your counts are really good. I don't think you want to risk a blood clot.
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Marie, thanks for your support. I didn't found any bruise in my arms and legs, it may be a good signal.DeeDee Marie wrote: It sure sounds like you are doing great! I really think you'd know if you had any serious problems. Are you still taking all the other meds? Good luck on your blood test!
Dee Dee
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