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(23 Mar 2024) My platelet count was 174
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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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
Bean - Jack is right. There isn't any one drug that will cause remission. Promacta has seemed to cause remission for some, according to recent studies. That does not mean it will happen for you. If not, it will be an on-going treatment until you decide to try something else. But if it gets you to 50k with few side effects, it's doing the job.
You do have to educate yourself when it comes to ITP. You have the right to make suggestions and decisions for yourself with the help of your doctor. You have to find the treatment that will fit best with your life. I agree, 5 day hospital visits would not have been acceptable for me either every time my counts dropped. I never was hospitalized with low counts (under 10k) and I never had IVIG. My doctor and I found other ways to manage things. Getting to work every day and being there for my kids was my priority. Not that I didn't take care of myself...I just found other ways that didn't take up time. I also kept an eye on symptoms and didn't panic over petechiae or a few bruises. You have to be aware of your body and how it handles low counts. 16k would not have put me in the hospital just because of the count, only if I'd had bleeding. If you are not happy with the direction your doctor is taking you, it might be time to look for a new one.
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- drbean7218
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Also, the doctors in Hong Kong won't let you out with low platelets counts, that's why I have hospitalized for 3 times in last two months
I have done my research, that's the only alternative they can provide in short term
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm not sure how it works in Hong Kong, but maybe a discussion with your doctor about that can avoid hospitalization in the future. Maybe now with Promacta, you will stabilize and it won't be an issue.
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Good luck to you and keep us poste.
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I will leave hospital today and going to buy revolade tomorrow afternoon
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Dee Dee
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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.
.
2. My hospital trips was requested by my doctor, since they believed that
Low platelets count (<20k) = you must stay in hospital for safety
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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
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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.
The serious sysptom was bleeding in my mouth when my platelet count is 3. I only got petachie with low platelet count, just only few spots in my arms or legs
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- Sandi
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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?
Apart from that, I took promacta (25mg) last night, but I found a tiny red dots in my arm this morning and I'm not sure whether it was the signal of low platelet count again?
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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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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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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When my counts are low (single digits) my gums will bleed on and off. Various items can cause you too bleed. Drinking too hot of a liquid, chewing on hard foods, brushing and flossing teeth are just a few things that can make you bleed.
A suggestion given to me was to use a baby's tooth brush when the counts were low. Make sure you use a mouth wash and becareful using floss.
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The first time my platelets went down, it was more gradual and didn't seem as severe. That time they only went down to 7.
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No one ever really knows why this happens to us. I've found that it is important to try and take care of yourself. Try not to stress too much and get enough rest when you can. As we get a little older, I think this is an important part for our healing process.
My hemo told me once that he thought a lot of his patients would relapse because they would go back to work and start stressing too much. Then, their platelets would fall.
Good luck to you and have a great time on your vacation!
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I've taken promacta (25 mg) for 5 days before blood test last weekend. My doctor didn't adjust the treatment, it still
a. 15mg prednisolone per day
b. 250mg Cyclosporin per day
c. 750mg Tranexamic acid per day
d. 25mg promacta per day
I'll meet my doctor 3 weeks later, let's wait and see.
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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.
I asked to my doctor yesterday, but she still need me to take Tranexamic acid.
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I'll have a blood test this weekend and see my doctor next week.
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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
Also, I am still taking prednisolone, Cyclosporin, Tranexamic acid every day. The effect of ivig should be disappeared, my platelet count should be supported by promacta, let's wait and see the result.
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