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(23 Mar 2024) My platelet count was 174
- dru
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- I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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- DeeDee Marie
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I'm so sorry to hear about your platelets crashing. You've been doing so well. It seems the culprit could have been the on-set of the flu. Hopefully, once your body gets rested up, your platelets will start to come back up.
Hopefully, the IVIG will get you back on the right track. Good luck to you and please keep us posted.
Dee Dee
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- drbean7218
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- Winnifred
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Keep the Chin up!
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- Ann
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Can you tell us more about your friend's ITP history? What has his lowest count been?
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- drbean7218
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The latest medical treatment is
a. Cyclosporine A - 200 mg daily
b. Promacta - 25 mg daily
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- drbean7218
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- drbean7218
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My platelets count crashed again, it may due to the effect of ivig disappeared after a week
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- DeeDee Marie
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So sorry that you are back in the hospital. Sometimes we cannot control all the things that
happens around us and it takes a while to get our platelets stabilized. As long as your symptoms are not bad, you should start to stabilize. Wishing you the best and hope that they get your platelets under control real soon.
Keep us posted.
Dee Dee
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- drbean7218
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We have increased the dose of Cyclosporin A from 100mg bd to 125 mg bd
Bean
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- Vdeutsch85
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I'm sorry I haven't responded sooner. I haven't been on here for awhile. Are you feeling ok? Any symptoms? Hang in there! I'm hoping your counts go up ASAP!
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- DeeDee Marie
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I sure hope you are doing better, too. You did so well this last year and the doctor got your platelets up. Does he have any reason for them dropping? Sometimes when mine drop, I can figure out the triggers--though, sometimes there is nothing we can do about it.
Hope your symptoms are doing fine. Please keep us posted.
Dee Dee
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- drbean7218
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Dee Dee,DeeDee Marie wrote: Bean,
I sure hope you are doing better, too. You did so well this last year and the doctor got your platelets up. Does he have any reason for them dropping? Sometimes when mine drop, I can figure out the triggers--though, sometimes there is nothing we can do about it.
Hope your symptoms are doing fine. Please keep us posted.
Dee Dee
At the end of April, my doctor attributed the dropping to the stoppage of Cyclosporin A, he suggested two ways
a. Keep the dose of Cyclosporin A at the min level, even the platelets count become stable
b. Splenectomy
I don't want to take option b, since it's too uncertain and I don't want to induce other problems.
When I back to hospital on 6 May 2013, the purpuric rash weren't too much. The doctor said that it may not an other relapse, but the blood test result wasn't as their expected.
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- drbean7218
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Looking forward, it depends on the effect of Cyclosporine A. I'll have a blood test next weekend, it will give us more information about it.
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- DeeDee Marie
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You are right about the splenectomy. I would never go that route. Sometimes the IVIG helps to settle the platelets (at least it did for me, along with Decadron). I sure hope you are doing better and that your platelets are stabilizing. If you do not have a lot of symptoms, that is what is really important.
So, are you staying on Cyclosporine A? That has been helping your platelets? Try to rest up until you are feeling better--the rest does help, too.
Dee Dee
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- Vdeutsch85
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- drbean7218
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Yes, I will stay on Cyclosporine A for a long time and we are doing in two ways;DeeDee Marie wrote: Bean,
You are right about the splenectomy. I would never go that route. Sometimes the IVIG helps to settle the platelets (at least it did for me, along with Decadron). I sure hope you are doing better and that your platelets are stabilizing. If you do not have a lot of symptoms, that is what is really important.
So, are you staying on Cyclosporine A? That has been helping your platelets? Try to rest up until you are feeling better--the rest does help, too.
Dee Dee
a. Using Cyclosporine A to compress the attack from the system
b. Using promacta to boost more platelets for the system destroy
I tried to rest after discharge from hospital last Saturday, but I still busy on my work, also the blood test and follow up consultation on last Thursday and yesterday.
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- drbean7218
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He decided to check it more frequently, but it seems that nothing he can do at this moment.
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- drbean7218
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The latest medical treatment is
a. Cyclosporine A - 200 mg daily
b. Promacta - 25 mg daily
It seems that cyc-A become effective and we are going to keep the lowest dose of cyc-a in long term, that's the conclusion of my doc's
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- Vdeutsch85
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Yay I am happy that your counts are back up! I was on cyclosporine for a while. Is cyclosporine different from cyclosporine a? It didn't do anything for me except make my stomach hurt and raise my blood pressure.
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- DeeDee Marie
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I, too, am glad to hear that your counts are back up!! The combination of Promacta and Cyclosporine A seem to agree with you.
Vdeutsch, sorry that it doesn't work for you. That's the way it seem to go. One med will work for one ITP'er and then not for another person. That's the I am, too.
Good luck to both of you!
Dee Dee
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- drbean7218
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cyclosporine = cyclosporine a, the character "a" is used for differentiating another type of cyclosporine, which is called cyclosporine GVdeutsch85 wrote: D bean,
Yay I am happy that your counts are back up! I was on cyclosporine for a while. Is cyclosporine different from cyclosporine a? It didn't do anything for me except make my stomach hurt and raise my blood pressure.
The effect of cyclosporine takes time. For me, it takes 1.5 months become effective.
Thanks, Dee DeeDeeDee Marie wrote: Hi D. Bean,
I, too, am glad to hear that your counts are back up!! The combination of Promacta and Cyclosporine A seem to agree with you.
Vdeutsch, sorry that it doesn't work for you. That's the way it seem to go. One med will work for one ITP'er and then not for another person. That's the I am, too.
Good luck to both of you!
Dee Dee
It's seems that one big step closer to the destination
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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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- drbean7218
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The latest medical treatment is
a. Cyclosporine A - 150 mg daily
b. Promacta - 25 mg daily
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- DeeDee Marie
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I've been to the PDSA conference here in Manhattan, California. I live near by and couldn't resist going for only $90!! (for 2-days).
It's always interesting listening to the doctors give their presentation and how much things can change in 3 years. I also like listening to the stories of other people with ITP. Some of us have very similar stories.
I was wondering if you doctor knows if the Promacta keeps your platelets up or is it the combination with Cyclosporine A? I am glad to hear that you are doing very well!!
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- drbean7218
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We are still looking for the answer.
My doctor tried to stop Cyclosporine A before and with promacta only, but my platelets count dropped to 6 after 1.5 months. On the other side, my platelets count wouldn't rise to 2xx without promacta before.
It really takes time to find out the answer and the combination of the treatment.
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- DeeDee Marie
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You are right about that. I think that Cyclosporine A is an immunosuppressant so it might suppress the immune system so that the promacta works. It's hard to figure these things out. If you think about it in a couple of months, you might want to get the DVD from this year's conference as there were a lot of interesting details discussed about ITP. I might go ahead and purchase it as it so hard to remember every thing!
Just glad to hear that you are doing better! Hope those platelets stay up.
Dee Dee
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