TOPIC:

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.
.

Very well put, Jack!

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.

Yeah it's def worth a shot

How can you manage with low platelets count without hospitalized?

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

Most doctors here in the US and the UK do not hospitalize unless there is bleeding or it's the patients first time with low counts. Also, once people get used to having ITP, they can decline hospitalization if an ER doctor is unfamiliar with ITP and is not sure what to do. It can be avoided if there is a treatment (such as Decadron) that can be used as an alternative to IVIG. Planing ahead is an option if you know you can get counts up in other ways.

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.

I agree with Jack. Very well said. When I was in the hospital, they released me when my platelets reached 12 (from 1). If you don't have symptoms, you are probably doing just fine. I would not let my doctor put me in the hospital with platelets at 16. My main goal is always to get my symptoms down. Once I am at that stage, I don't worry that much.

Good luck to you and keep us poste.

The latest platelet count is 174
I will leave hospital today and going to buy revolade tomorrow afternoon

That is great news! Keep us updated!

Really great news!! Glad they got them up that high! Please keep us posted.

Dee Dee

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.
.

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.

2. My hospital trips was requested by my doctor, since they believed that
Low platelets count (<20k) = you must stay in hospital for safety

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.

Maybe you should try a new doctor? Or print out some articles to give your current doctor?

DeeDee 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

How much bleeding in your mouth? Was it just when you brushed your teeth or was it more than that?

Sandi wrote:

How much bleeding in your mouth? Was it just when you brushed your teeth or was it more than that?

Sandi, I have bleeding when I brushed my teeth and having several unknown injuries in my lips when my platelet count is 3

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?

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.

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.

Although it wasn't a serious bleeding, it really goes on for a long time to stop bleeding (>15 mins)

Last time I went to hospital was because of my gums bleeding. They started bleeding about 0200hrs bleed on and off by 2000hrs I was feeling punk. Went to emergency at 2200hrs because at that time I had the pain in my stomach like I did years ago when they said I had internal bleeding.

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.

Some toothpastes are abrasive too and can cause bleeding even with normal counts. I've had it happen many times. If counts are low, be careful what you use.

I wouldn't worry too much about the petichae. I was at 85 today and still have a few on my arms.

Last time my platelets crashed, I started bleeding in my gums and even around my lips. It took a while to stabilize every thing--then I started to get better.

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.

I feel so bad for all of you who have horrible symptoms from this crappy disease. I am hoping something new is found that will help everyone. I feel fortunate so far, but I am aware everything could go to hell in a handbasket tomorrow, next month, next year.

Roberta,
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!

I have a follow up consultation yesterday, the latest platelet count (as at 29 Jun) is 267.

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.

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.

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.

Thanks, Sandi.

I asked to my doctor yesterday, but she still need me to take Tranexamic acid.

I never completely trust my doctors 100%. I would check around with other doctors to see if all these meds are necessary.

I've taken promacta for 3 weeks, everything goes fine.
I'll have a blood test this weekend and see my doctor next week.

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

DeeDee 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

Marie, thanks for your support. I didn't found any bruise in my arms and legs, it may be a good signal.

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.