TOPIC:

Sorry to hear your counts went down again. Hopefully the IVIG will help.

Dean,

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

I have injected 2 rounds of ivig, 3 more rounds to go

Here's hoping for a quick and speedy uphill with the counts and they say get out of here and go home!


Keep the Chin up!

You can try papaya leaf extract to help increase your count I referred my friend and he called last week to thank me since it his count went up from 120 to 140 after two weeks of trying it. You can get the organic papaya leaf extract from Herbalpapaya.com.

Do you sell the papaya Beneza?

Can you tell us more about your friend's ITP history? What has his lowest count been?

I have dispatched this afternoon, even I have a blood test this morning.

The latest medical treatment is
a. Cyclosporine A - 200 mg daily
b. Promacta - 25 mg daily

His lowest count was 50 and I spoke to him last week and he said its at 120 and he was going to purchase more of the papaya to help get it up. He has been suffering with platelets for a few years and his dosage of steroids was been increased so he did some research and found out that papaya helps with low platelets. I have a friend who sells papaya products and I buy it from her and from Sprouts, I do not have ITP but I use a lot for papaya. The cream, soap, tea and the leaf extract. I am originally from a tropical island where papaya is very common its just a fruit I love and its extremely health. I can't go into to much details about my friends history cause am not sure if it ok with him I have sent him and email with the link asking him to join and am hoping that he does. Cause I have learn so much more about ITP by just reading through some topics, also the support given to each other on there is awesome.

It seems that my platelet count crashed again, I'll back to hospital today/ tomorrow morning.

I am hospitalized.

My platelets count crashed again, it may due to the effect of ivig disappeared after a week

Bean,

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

Dee Dee, thanks.

We have increased the dose of Cyclosporin A from 100mg bd to 125 mg bd

Bean

Bean,

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!

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

DeeDee 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

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.

When I was discharged on 10 May, the count was 98. That figure was the result after 4th injection of ivig, we don't know the actual figure when the treatment was completed.

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.

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

Please get some rest and keep us updated

DeeDee 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

Yes, I will stay on Cyclosporine A for a long time and we are doing in two ways;

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.

I just met my doctor this morning, the platelet count dropped again in a week and my doctor is afraid of crashing again, but that count was insufficient to make me stay at hospital.

He decided to check it more frequently, but it seems that nothing he can do at this moment.

The latest platelet count as at 7 Jun 2014 - 169

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

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.

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

Vdeutsch85 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.

cyclosporine = cyclosporine a, the character "a" is used for differentiating another type of cyclosporine, which is called cyclosporine G

The effect of cyclosporine takes time. For me, it takes 1.5 months become effective.

DeeDee 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

Thanks, Dee Dee

It's seems that one big step closer to the destination

Now I wonder which one I was on. It's so true one thing will work for one itper and not another. When I went to the local pdsa chapter this one woman brought up the fact that she believes there are many different forms of itp. I think she's on to something. There are so many variations with all of us.

I think that the different 'forms' depend on which antibodies a person has. There are several antibodies linked to destruction and several linked to production.

The latest platelet count as at 5 Jul 2014 - 229, but hematin dropped more than 3g/dl become 9.6g/dl

The latest medical treatment is
a. Cyclosporine A - 150 mg daily
b. Promacta - 25 mg daily

Hi Dr. Bean,

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!!

Hi DeeDee,

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.

Dr. Bean,

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