My short story

Hello everybody,

my name is Petra and I am from Germany. I was diagnosed with ITP almost 2 years ago. I was in the hospital for a week and was treated with prednisone (120 mg) and immunoglobulins. Neither of it had any effect on my counts. I tried a homeopathic treatment as well. No effect. My last counts were at 5k.

Next Monday I have the next "date" with my hematologist and I want to ask him about Promocta (in Germany it is called Revolade). I hope this will finally help me to get my platelets back to a safe level. I am, however, a little scared about the side effects. Well, I guess, thats the risk I'm having to take

I will keep you posted on my success.

Welcome to the group. Don't hesitate to ask questions. I've personally never had Promocta, hope that works well for you with little to no side effects. Take Care Rodger

Hello Petra. I like your name Welcome to the boards. Those are the only 2 treatments you've tried? I'll be praying the Promacta is the thing for you. Looking forward to hearing how it goes.

Petra: I think we will all be anxious to hear your results. I tried Promacta (50mg)for 2 weeks before a non-related medical condition forced a temporary suspension of the program. During those 2 weeks, my count topped out at 595k. I am planning a re-start about August 23 but I will start at the 25mg level.....if my Hemo Doc agrees. We know the Promacta works for me but we are not quite sure how to control it. And I did not have any side effects from it.

Good luck Petra! I hope Promacta works for you.

What part of Germany are you from? I'd love to visit there someday!

Hello and good morning,

@ Server:
Yes, these are the only treatments I tried so far. A splenectomy is no option for me and I refuse all medicaments that will suppress my immune system. Nplate is no option too, because I have a phobia of needles of all kinds and even the thought of having an injection every week for the rest of my life (I'm only 32) is quite scary. :ohmy:

@ Sandi:
I was born in Berlin, but now I am living near Munich.

We have a family friend in Bavaria - beautiful there (I've seen pictures)

Ishani - if you are refusing immunosuppressants and needles and splenectomy, you've pretty much knocked out all of the treatments. You could try Promacta if it's available, it's a pill.

As far as N-Plate - don't think of it as being for the rest of your life. Something else may come along that could replace N-Plate, so it could be a temporary thing.

Hopefully, Promacta will give you good results with few side-effects.

Side effects and such? I'm 57, diagnosed 7 years ago. I also have a "love" of needles, so I opted for Promacta over Nplate. I get enough needles in testing.
I've been on Promacta for 7 months now. I started on Promacta after immune suppression stopped keeping my count above the 20k range. It took me two months of Promacta to get above 14k, I sort of leveled off after 3 months to around 35k-50k. Since I have never known a count over 90k, anything above 20k is just fine by me.
The side effects are FAR EASIER for me to live with than many other treatments I've done. I experience these: upset stomach, creepy-crawlies (the sensation of spiders dancing just under my skin), since week #8 my appetite has decreased by 1/3, I've been losing weight (fine by me!), and over this summer I have discovered it makes me quite heat sensitive. I'm good for an hour or two in the sun now and that's about it.
However, all in all Promacta is easier for me to live with than the alternatives.

But everyone has different reaction to this treatment. Some folks have no side-effects at all.
.

Hi Ishani,
It sounds like you are on a good start with Promacta. My ITP came back after being in remission for 4 years. I was treated with high doses of Decadron and other steriods and then with IVIG. My platelets have gone up with the IVIG--but we all know this can be temporary. I have an appointment with another doctor at USC to go over other treatment plans for the future (2nd opinion). My platelets were below 5000 when I went to the hospital a few weeks ago, so I know how you feel with the low number.

I wish you good luck with Promacta and hope you do very well with it (and high platelets, too!). Let us know how you do.

Best Wishes,
Dee Dee

Hi Petra, I hope you have a good visit with your hematologist on Monday! Sorry your count is so low right now.

I hope some day to get to Germany - all my ancestors, maternal and paternal, are from Germany.

Keep us updated on how you are doing.

Hello,

here I am, back from the hospital. No good news I'm afraid. My counts have droped to 4,000

My Doc says it will be difficult to convince my health insurance company that Promacta is the best choice for me, as I still have my spleen. But she wants to try, she says with my phobia and the depressions, we could argue that neither a splenectomy nor any other treatment (prednisone, etc.) is an option. So, please, keep your fingers crossed. She will call me today or tomorrow...

Now, I hope that at least the birth control pill will work, so that we could suppress my period for a longer time, maybe 4 or 5 months. That would help a lot....

I'm so glad I found you.

Hi Petra,
I'm sorry to hear that your platelets are a little lower than before. But, from what I've heard, there is not much difference from 5000 compared to 4000. I know how you feel since my platelets went all the way to 1000 a few weeks ago. Then, the IVIG brought them up to a safe level. Now they are on their way down again--probably dropping 24000 a day. The doctor I talked with today is going to discuss with my regular doctor some kind of treatment plan.

Try to have hope that your doctor and insurance company will come up with a very good treatment plan. And, one that you will be happy with.

Best of luck to you.

Hello,

this time, I have good news In approx. 1 hour I have an appointment with my hematologist and we will try Promacta :silly:

I hope this works.

Petra, that is really good news! Wishing you all the best of luck on your treatment plan. Remember, you need to have a little patience, too, while you are being treated.
Let us know how it goes--but do remember to have patience.

Yesterday I took the first dose of Promacta. I realy hope, this will work, but I'm confident that it will

So far no side effects.

I'm just curious...what dosage are you taking?
25mg, 50mg, or 75mg?

Hope the 'no side effects' continues for you and your count rises.

weirdjack wrote:

I'm just curious...what dosage are you taking?
25mg, 50mg, or 75mg?

I'm taking 50mg

Please keep us updated re your counts.

I will do that, Athos. My next blood check is on Thursday.

Hello,

I'm back from my hematologist. No change so far. After one week with Promacta my counts were at 5,000 today Next check will be next Thursday. Hopefully with better results...

My hemoglobin is down to 9.7 :S I'm taking iron now: 130 mg...

After one week with Promacta my counts were at 5,000

Hang in there.
When I started on Promacta, the first 3 weeks only got me from 4k to 14k.
It took 8 weeks for my count to get to 32k, then another 4 weeks to get to 52k. After that, my count has stayed in the 40k range.

Hopefully, you'll get to a safe count faster than I did.
(For me, 'safe' is pretty much any count over 20k)

Hello there,

again, only bad news My counts droped to 2000. I'm taking now 75 mg of Promacta and hope, that this will work...

My hemoglobin went up a little, though. At least some good news... :blink:

I'm taking now 75 mg of Promacta

Keep hanging in there.
50mg of Promacta didn't work for me either. I had to go to 75mg before any real change happened...and then it happened slowly. Everyone is different.
.

Promacta is still not working. My counts have dropped to 1000 My Doc says we will keep trying for 3 more weeks. After that I will have to try Nplate :ohmy:

So sad....

oh, I'm sorry it appears to not be working for you. I'm with Jack....give it more time. And NPlate is known for bringing up counts. You doing ok otherwise?

Hello Server,

yes, I'm ok so far. Although my counts are THAT bad, I have only minor bleeding signs. A few bruises and petechiae, nothing serious...

There's still no improvement. Promacta won't work for me. Next week we will start with Nplate.

Counts today were at 1000. :huh:

It'll be ok Ishani. We all know that what works for one doesn't work for another. I'm believing that the NPlate will help! Stay Strong!

Stay strong Ishani. My platelets were also at 1000 off and on for a while and I really didn't feel that bad. As long as your systoms aren't that bad (bleeding and bruises), you should be fine. Sometimes are body just needs a rest from the meds. When I crash, my platelets seem to head towards 1000--and I feel just fine. Would never think they were at 1000.

I also believe NPlate will help! Try to hang in there! You will be in my thoughts.

Ishana

believe you me at the beginning of my ITP in 1994 I was atypical person who had a real dislike for needles and that medical tray/trolly with equipment on and visible go pale at the sight of it according to anyone around me:-} and as a child the real tears.