TOPIC:

Bean,

Good to hear about your counts! I was in a similar boat, where I would be in a high range, the doc would skip the Nplate and I would crash to single digits by end of the week. You kind of have to consider risks vs. rewards. I am young, not over weight, don't have a history of blood clots in my family so I will take the higher counts rather than have single digit counts and risk bleeding and feeling like I can't move. I have been on Promacta for a month now.....my count was 258 two weeks ago so I'm guessing the doc will drop my dose this week or maybe in a few.

Vdeutsch85 wrote:

Bean,

Good to hear about your counts! I was in a similar boat, where I would be in a high range, the doc would skip the Nplate and I would crash to single digits by end of the week. You kind of have to consider risks vs. rewards. I am young, not over weight, don't have a history of blood clots in my family so I will take the higher counts rather than have single digit counts and risk bleeding and feeling like I can't move. I have been on Promacta for a month now.....my count was 258 two weeks ago so I'm guessing the doc will drop my dose this week or maybe in a few.

Many thanks for your message.

What you have experienced is our concern, that's why our plan is going to step down Cyclosporin and prednisolone before we step down promacta.

I was on cyclosporine as well and have been completely weaned off of it. I had a lot of side effects from it including high blood pressure. I was at 258 with just Promacta a week and a half ago so I'm glad your doc is taking a similar approach. I'm wondering who is your doctor because his theory seems very similar to mine.

Just be careful, guys. There have been at least two people here who have had strokes (blood clots) while using TPO's. One woman was in her 20's. You don't have to have a family risk of strokes, be overweight or old; ITP itself can be associated with clotting risks.


www.pdsa.org/join-the-community/discussion-groups/7-treatment-general/27483-a-word-of-advice-about-promacta.html

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.hematology.org/Publications/Hematologist/2011/7179.aspx

www.medwirenews.com/62/76600/Thrombosis/aPL_predict_ITP_thrombosis_risk.html

Vdeutsch85 wrote:

I was on cyclosporine as well and have been completely weaned off of it. I had a lot of side effects from it including high blood pressure. I was at 258 with just Promacta a week and a half ago so I'm glad your doc is taking a similar approach. I'm wondering who is your doctor because his theory seems very similar to mine.

I didn't have side effect on high blood pressure, but cyclosporine caused acne on my face, its really hurt.

Sandi wrote:

Just be careful, guys. There have been at least two people here who have had strokes (blood clots) while using TPO's. One woman was in her 20's. You don't have to have a family risk of strokes, be overweight or old; ITP itself can be associated with clotting risks.


www.pdsa.org/join-the-community/discussion-groups/7-treatment-general/27483-a-word-of-advice-about-promacta.html

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.hematology.org/Publications/Hematologist/2011/7179.aspx

www.medwirenews.com/62/76600/Thrombosis/aPL_predict_ITP_thrombosis_risk.html

Many thanks for your information

What I've experienced before was a crashed in a week with the same dose of the medicine (without prmoacta)

This time, my treatment seems on track, it's a good news that I didn't find any petechiae on my skin when I have taken 5mg prednisolone alternate day for a week.

I was diagnosed June 26, 2013, with a count of 1. Sent to hospital & started on Prednisone & have been on Prednisone ever since. Started on 60mgs. & my Hematologist has been trying to wean me down. What I absolutely hate about the Prednisone is the puffy face & neck!!!!! I am also seeing a gastro Dr. because I have a live condition & they are concerned about my taking the Prednisone for extended periods. I am down to 10mgs. & I go for my bloodwork once/week & am tired of stressing over what my count will be. I am just tired of dealing with this crazy condition!!!!!!
I am afraid of the alternative meds. But most of all I can't get beyond my outward appearance!!!

Dolores,

Hi there! And Happy Friday! Sorry you had need to find us all hiding here! I too was on prednisone and I gained about 50 pounds plus while I was on it. I was diagnosed about a year ago. Don't sweat it! The weight will leave, and you will be fine. I am making some gains against my gains, so to speak! I also did not sleep much while I was on it. I think I also got a little cranky. I know, soooo hard to believe! All will be fine! You just focus on getting the ITP under control and do not add any stress to it! I just went through a little bout of putting myself through some that was needless.

Now, I too, hated what the prednisone did to my appearance. But it will pass and fade away. You just hang in there and smile! Nothing is better looking than a smile!

Remember you are the same person you have always been, and if someone does not appreciate you for that in itself then that is their loss! I mean, like me, whats not to like?????

I hope I have made you smile and forget the ITP for a bit! You will find more information here than anywhere. Some of the folks on here will know as much as more about ITP as a lot of Doctors. Just fire away with your questions and you will get answers. Be informed! Be your own advocate! And remember, YOU ARE THE SAME YOU HAVE ALWAYS BEEN! You have just misplace your platelets! If I see them, I will let you know!

Stay in touch!

Jeffrey

Ha Dolores! I know *exactly* what you mean. It was the fat face I hated when I was on steroids. I lost my sense of taste which was a blessing so I didn't over eat and the fat face was purely steroidal. The good news is that when I got down to 5mg the fat face just disappeared almost overnight.

The latest platelet count is 255 (as at 16 November 2013)

My doctor step down the treatment again

a. 2.5mg prednisolone alternate day (step down 50%)
b. 50mg Cyclosporin per day (step down 50%)
c. 25mg promacta per day

I'll meet my doctor one and a half months later to see the progress of the treatment.

Drbean!

Good for you! I would require 6 cbc's added up to get to that number! I am happy that you are doing so well! Enjoy!

Jeff

Bean,

It really seem like you are on your way!! The doctors have been taking you slow and easy and it does seem to be working!

Good luck to you and hope you are feeling good.

Dee Dee

Happy New Year

The latest platelet count is 268 (as at 24 December 2013)

My doctor step down the treatment again, prednisolone was removed this time.

a. 25mg Cyclosporin per day (step down 50%)
b. 25mg promacta per day

I'll meet my doctor one and a half months later to see the progress of the treatment.

Bean that sounds positive. Maybe you could end up on just Promacta. Happy nye!

Vdeutsch85 wrote:

Bean that sounds positive. Maybe you could end up on just Promacta. Happy nye!

Thanks, it still one more time to remove Cyclosporin completely. If everything goes right, our ultimate objective is end up with no medicine support.

Bean,

So glad that you are going well!! You are getting there. It would be nice to ultimately end on no meds. Good luck to you!

Dee Dee

Hey guys, I just met my doctor this morning, here is the result;

My platelet count is 256 (as at 8 February 2014)

Cyclosporin is removed, but promacta didn't step down this time. I'll meet my doctor two months later, hopefully they will step down it next time.

Bean,

That is awesome news. I think I've said this before but I think our docs have similar approaches. My count was 257 today so I'm expecting my doc to lower my Promacta when I see him in march.

This is really awesome for both of you!! Sounds like you both are on a very good treatment plan--and one that works for you. It's always good to hear good news.

Wishing you both all the best!

Dee Dee

Vdeutsch85 wrote:

Bean,

That is awesome news. I think I've said this before but I think our docs have similar approaches. My count was 257 today so I'm expecting my doc to lower my Promacta when I see him in march.

It's seems like that.

I am so happy with the result, even the treatment was last for one and a half years.

We have tried different alternatives before, but the effect wasn't as our expected. Taking Promacta is the last option before splenectomy.

At this moment, I'm still not sure whether my platelet count was supported by promacta or my immune system back to normal?

I'd be willing to bet that Promacta is the reason for your counts.

The latest platelet count is 126 (as at 4 Apr 2014)

My doctor said the reason of dropping may be due to flu. At this moment, my doctor didn't have any further action on my medical treatment, I'll see my doctor three weeks later to see any changes on platelet count.

Taking Cyclosporin again is the further action if necessary.

That is a great count, Bean!

Sandi wrote:

That is a great count, Bean!

My doctor said it's sufficient and may be a normal fluctuation, but I am afraid of another crash even I am taking promacta.

If it is going to crash, some symptom will appear this weekend.

Bean, try not to worry so much. You are doing great!! You should try to enjoy it! I know my platelets are probably fluctuating a lot since I had my surgery, but I try not to dwell on it too much.

Best to you!

Dee Dee

Dee Dee, thanks.

I will stay positive:)

I found some purpura on my arms, legs and chest this week, it may be the signal of the platelets crashed again and due to flu in the beginning of April

I will hand-on until this Saturday, since I'll have a blood test this weekend and follow up consultation next Tuesday. I've prepared the worst situation that I need to be hospitalized and the medical treatment back to the starting point after the follow-up consultation.

I am hoping the promacta still effective in my body, so that the platelets count will not decrease too much at the blood test.

Its crashed again，I need to stay at hospital again.

Sorry to hear that Bean
Hopefully the Drs can get your count up soon. Take care.

Jac

I'll have a treatment of ivig for 5 days