A mother from France

Hi everybody,
First I apologize for my pour english. I'll do my best to speak english and to avoid mistakes.
My daughter Who is 19 years old since march Was diagnosed itp on january 2016. She never had been ill before.
She was on the point to leave home for studying in Switzerland ans we had to forget this plan for a while because se was very tired and needed tests in the hospital.
Se had prednisone and it worked very well but when prednisone stopped the platlets dropped slowly and she had a new treatment with prednisone which worked but then she got an infection in a rein and went to the hospital for a few days. She was rather quickly fine. The clinician tried plaquenil with light prednisone but il failed ( platetets went from 100000 to 27000) and now she tries Promacta. As she was born in Vietnam she has 25 mg each two days in the beginning and a blood work tomorrow. If all is right she will have 25mg each day. The hemo hopes it can work. She is a good one and for now we trust her.
My daughter would live to travel a few days in the Us because she has met a very nice friend and the are in love. The only good news since january ! I truly hope it'll blé possible.
I went in forums in France since january and i have read everything about itp since january. I found this forum for two or three weeks and I love it because it is very positive. As a mother I'm so sad because l'm afraid itp was triggered after a flu vaccination I wanted my daughter to have before leaving home...so stupid I was! There are other possible causes because she was ill with strong coughs and Fever before itp but i feel so guilty.
I wanted to send a Word first just to speak and tell our story . Something says me it can help even if I don't know what.
I stop for now. Hello from France.

Hello. I'm happy you found us.

Promacta is often successful as a treatment so you have every reason to hope that it will work for your daughter. It is not supposed to keep counts in a normal range, it should be dosed to keep counts around 50k. I hope it works for her, please keep us informed.

ITP can be triggered by vaccines but please do not blame yourself. You had no way of knowing what would happen.

Thank you so much for the answer. I'm so glad I can have a connection!
I " travelled " a lot through the forum and find a kind of peace reading posts and learning through the different experiences. I mean life experiences more than treatments because the itp has changed a lot in our family life and I'm happy to read positive words and encouragements...I'm rather positive on my side but as the disease was'nt mine but my daughter's it's sometimes a little hard... I think we were lucky to have immediatly a very good hemo near home and by reading some posts I understand we are lucky too with the french health insurance which allows everybody to have free treatments. Sometimes I understand people can't afford a treatment and it's something quite unfair...I'll tell you what happens with Revolade ( Promacta). Thank you once more for the answer, it helps me a lot to be brave for my daughter. She is brave too! Have a nice day...

Laufromfrance,

I am glad you feel good about your daughter's hematologist, at least "for now". Many members of this forum have found that even though they have a good doctor, that doctor is not very experienced with ITP. Sometimes it is a learning process, and it is important for the patient (and in this case her mother) to be as knowledgeable as possible, and this forum is an excellent source of knowledge.

The problem with Revolade is that it is critical to find the right dosage. Too low, and there are ITP symptoms. Too high, and there is increased risk of blood clots. The goal should be to keep the platelet counts as close as possible to 50,000. It can be difficult to find the right dosage, as small dosage changes can make large differences in counts. Weaning (gradually withdrawing) from prednisone complicates finding the right dosage. Very small changes may be necessary, sometimes alternating between dosages on alternating days.

EmilyK had a very difficult time stabilizing her counts, which is described in detail in this thread:
pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/28574-my-journey-crazy-emily.html?start=150#49549 In the end, she was very successful.

When your daughter travels to the US, she should bring with her plenty of prednisone just in case she starts showing symptoms. She should be careful to walk around on the airplane occasionally to avoid deep vein thrombosis (blood clots in her legs). Otherwise, as soon as her hemo gives approval, she should not be afraid to travel, especially since she is responsive to prednisone.

Please let us know from time to time how your daughter is doing.

Thank you very much for the answer and the advice.
For now Marie has 25 mg each two days and 4 mg prednisone and 2 soon...
I understand that the good deal is about 50 000 and our hemo was very clear about this point.
We'll have a first blood work tomorrow, we'll see.
We have a prescription for prednisone in case of symptoms too, and Marie is very responsive to prednisone.
I read the post about EmilyK and it was very interesting.

Have a nice day.
I hope sh'll be allowed to travel. We spoke about it to the hemo last week and she seemed to be ok. As you say in english: wait and see. First time for me in a forum and in english! Double challenge! Thanks a lot.

Your English is wonderful! I have no problems understanding what you are saying at all.

It sounds to me like your Hemo is experienced with Promcta; that is great!

Laufromfrance,

My daughter was diagnosed with ITP at 16 but we were able to just monitor her for a while until her platelet count really dropped and she had some bleeding issues. She also had pretty overwhelming fatigue.

She has been on Promacta for about 13 months now and has had a great response ( she was never on Promacta and prednisone at
the same time though). She started on 50 mgs and had some mild side effects at that dose (loss of appetite, the sight of food made her sick and some mild increase in hair falling out). She was able to decrease the dose within a month and the side effects all disappeared. She is a little chunky anyway and has really thick hair so it was no big deal. After being fatigued and bruised and banged up before she started the medication she just looked and felt so much better, was so much more active and was able to have a great summer last year hiking and doing all the outdoor activities she loves. And I am happy to report she is maintaining good counts on Promacta. Right now the doctors are tapering her dose (12.5 mg three days a week) and to be honest I am very hopeful that she will be completely off the medication in the near future.

Best of luck to your daughter. I hope she has the same response that my daughter had and can do all the things that she wants to do.

Hello TerriC14,
So nice from you to give an answer.
I'm glad for your daughter, I understand very well when you say she's happy now with a full life and recovering her activities.It's sad when we see our children tired and sick. And your daughter was lucky not to have Prednisone!
First, when ITP was diagnosed, in january, Marie was very tired but even in 29 000 ( her lowest count, but in fact she had treatment then so we don't know if the platelets could drop in a lower level...) she never had bleedings, except once with her month...For now, she as a side effect with Promacta, it looks as insomnia but it is just the beginning... Nothing else. In french we say when we want to be lucky: I touch wood!( Je touche du bois...) I dont't know if it makes sense to you!
We hope she'll be OK with Promacta and Promacta will work for her. She has got just 25 mg each two days because she was born in Vietnam and asiatic people must be careful, I don't know why, I forgot to ask the question about this to our Hemo...By the fact, I knew that before we began the treatment with Promacta.
Do you know the reason why your daughter had got ITP? I understand it's hard to know the reason why some people got ITP but it's always in my mind, because I think that if we get the reason we 'll get the cure...It's something more obsessionnal than rational, I know.
By the way, your post is positive and helps me. Thanks a lot. Have a nice day, yoour daughter too.
Hello from Paris!

Hi again,
We had a blood work today: 54000, with 25mg Promacta each two days since a week and 4 mg Prednisone.
I'll ask the Hemo if we remain this way or if we use 25mg every day as she first asked we to do.
In the bottom of my heart I am not far to think it's good news and hope I am right...But we must wait and I'm not a doctor, just a mother.
I'll tell you what will happen.
My daughter hopes so much to be able to travel in USA in about 15 days to see her friend near NY!
I understand we can order blood works by internet...We cannot do the same here in France!
Her mother's friend is an internal medicine clinician so I think we can ask her to translate the french blood work so I can order the right analysis...
I think she can travel with such a count, but we'll ask the hemo here to be sure.
Thank you very much everybody who answered me.

She should be able to travel with that count. The only problem is that she hasn't been stable yet, but if she continues the medication she should be okay. How long will she be here in the US?

PS. We say 'knock on wood' for luck.

I think about three weeks...
So let's "knock on wood"...not very different by the way.
I'm very grateful for the answers. It helps me to be more confident, and I see a lot of people here thinking and saying the same when they post. I know it takes time and energy to answer so many people and to encourage them. For my opinion it's very worthy and I thank you a lot for that.
And I improve my english!
I'll tell you in a few days what happens. Friendly. Laurence.

Hi - I'm reading but haven't responded. Just wanted to let you know I was diagnosed 27 years ago and about 2 months later we moved our family to Japan. I was on 60mg of prednisone and my platelet count had not been stabilized.

I wish your daughter well and I sure hope she can continue with her dreams of studying in Switzerland and also coming to visit in New York.

Please keep us up to date on how Marie is doing!

---

(I used google to translate - hope it is a good translation)

Salut - Je lis, mais n'a pas répondu. Je voulais juste vous dire que j'été diagnostiqué il y a 27 ans et environ 2 mois plus tard, nous avons déménagé notre famille au Japon. J'étais sur 60mg de prednisone et ma numération plaquettaire n'avais pas été stabilisée.

Je souhaite que votre fille bien et je l'espère bien qu'elle peut continuer avec ses rêves d'études en Suisse et aussi venir visiter à New York.

S'il vous plaît nous tenir à jour sur la façon dont Marie est en train de faire!

I love the French language! It's so beautiful.

Thank you, Sandi and Melinda, for the kindness I read through your words!
Hello Melinda, your "story' sounds well since it looks as if full life is possible with ITP, and it's great to ear...
But, have you been having ITP for 27 years? Waouaw! I hope the best for you.

For now, let's speak about language and not about diseases: I think a beautiful language is a musical one. For me, who is living in France, italian language is wonderful, as far as it's the opera language and i'm very found of operas! And I like english language too, ( I meean spoken in England) because it often occurs with humour, and english humour is very nice and funny.
30 years ago I travelled to the US and spent two marvellous weeks in Boston: we were young, students, the whole life in front of us...you see whant I mean.
I can write and speak a little english, but I remember it was hard for me to understand american people.Often too fast for me...But it was more a feeling than a reality. Everyday,in Boston, I tried to speak and people said at once : " Oh you're French? " and they added: " Enjoy the states! " I was often lost when we spoke more, but I remember many friendly times in your country and I still have in my ears these happy " Enjoy the States!".
Through the years, I have improved a little with the movies and the american TV series ( I'm very found of them, I must tell the truth, specially those who take place in NY...)
Now I'm improving about platelets and blood works! That's life.
I hope the best for you in this day.
PS: What wi'll Trump say tonight? We speak of him in France, you know...!!!I won't say more. We have our problems too. And they are big.
Friendly.

Yes, it is a shame what is happening in France. Germany too. It makes me very sad. People need to keep their eyes open, many major changes are happening on a global scale. Not good at all and will change life as we know it.

It's nice that you were able to visit here. I have lived in MA but never went to Boston.

Lau--

Read. Learn. Listen. Act. Believe. Hope.

This will be a journey, not a sprint. You and your child will have ups, downs, happiness, tears, fear and most importantly...change. Both good and bad.

Compared to the other courageous, brave and wonderful people in this group, I am one of the lucky ones. Your child, and your life will change. Both for the good and bad. Let me tell you this, the good outweighs the bad. This condition for most is a wake up call.

Tell your child to enjoy life. Kiss one of the coolest moms in France. Climb a mountain. Take up an instrument. Live. Take up jogging. Believe that things will get better. Relax. Lose weight. Understand that juggling chainsaws is out. Touring the world is not.

Finally...find support. Sandi and the folks on here are fantastic. I am a "newbie". These folks here are the real deal.

If you need anything, let us know.

Tim