Perhaps you can help, thank you

Hello from France, and sorry for my poor english. I wrote in 2016 because my daughter was diagnosed itp in january. First prednisone worked very well ( 50mg for Two weeks and counts up from 23000 to 320000 but when she tapered counts lowered ... ) and then to avoid prednisone the hema tried promacta. One week with 25mg daily and she was 100000 ans then she had one pill each other day and then three times in the week and then two pills in the week and she was stable above 60000 for months. She tried to have one pill in the week which worked for two months and then she was tired: counts were 37000. She had two pills again but slowly counts went down and in the beginning of april she was 20000. The hema said to have promacta one pill daily for a month and when she was 12000 to take prednisone Again. But with prednisone 50mg for a week and now 40mg and promacta daily since three days she is still low ( 16000). It seems as If which worked once, both prednisone and promacta, is no more working. Nothing special happened yet, as far as we know. Does it make any sense for you? Have we lost promacta power? Thank you so much for hour help and so sorry for my english. Itp has not improved, neither did my english. Laurence.

Sorry, I think I must explain more. For now the problem is:
- when itp was diagnosed, prednisone worked well and quickly, since my daughter recovered her normal range of platelets in two weeks, and even if she was low again after she tapered prednisone we thought prednisone could be a rescue treatment in case of low counts.
- when she first had promacta, the answer was good and fast too, since after one week with 25mg daily, she was above 100000 and she could immediately reduce the dosage: one pill 25mg each other day, and the three times in a week, and then twice in a week, and then once in a week from September 2016 to March 2018, and platelets above 60000.
- in the beginning of April she was 20000, even she had twice in the week for four weeks, and then she had something like appendicitis and was hospitalized but it occurred it was not. Because she was low, 12000,the hematologist decided to stop promacta, to give prednisone back, which gave her something like 60000 in five days, but after one week more with 40 mg, she was 17000 only, and the doctor decided to continue prednisone 40 mg and reintroduce promacta 25 mg daily. This was last thursday, and Saturday only 16000. Few petechiae, no bleeding, and my daughter was tired.
- we are wondering why prednisone is not working the same way as it did first, and why promacta seems not so effective at it was first.
- we tried to investigate about something new in her life: she has OC pill to avoid heavy periods, and it is progesterone only. She used to have the non generic, and the chemistry gave her the generic for March. Could it be that?
- she was a little anemic and took iron pills, by the same time. Could it be that?
What to do? Wait more and see if it improves with the time?
- why both prednisone and promacta which worked so fine have changed their manners?
I know itp is surprising but if you have some light to share with us, I would be delighted.
I often read the posts, don’t write often, because of my English. I hope I’m clearer in this post than I was in the first I wrote this morning.
My daughter is 21 now. She was born in Vietnam, so she has low doses of promacta. Something about clearance with Asian people.
Have a nice day, thank you very much for your help.
Mother in France.
E

Your English is very good. Many of us have trouble with medications that work well stop working or don’t work as well. The reason for this may be different in each person.
There are many other treatments so maybe you should ask your doctor about other treatments.
Dru

I don't know Lau. If I understand the timeline, seems like giving the steroid and Promacta combination some time to work would be good? My guess is that this will work again, or, she'll just need a higher dose of Promacta then she's needed before/started with. What was that, 25mg every other day at the start?

I'd give it a bit more time. It's still early to consider it a failure this time. If you don't see any response after a week or two, let us know and we can help you with other treatment options.

Thank you for your answer. I meant that when my daughter started promacta, she had 25mg daily and at the end of the week she was 100000. So, she reduced and for the second week she had one pill only monday, wednesday, friday and sunday. I wrote then: every other day, because i thought it´s the way to explain that in english. In fact she needed not so much promacta.
For now the hematologist wants her to have IV ig wednesday and thursday This week, because she wants her to be off prednisone quickly. She is also speaking about rituxan. Not glad about that. But we have not yet spoken. I underdtand ivig is the step to avoid steroids which are not working for now. Perhaps my daughter can try promacta again.

Thank you very much for the answer. In fact, Marie will have ivig wednesday and thursday because the hematologist is worrying about stéroïds for nothing. And wants my daughter to think then about rituxan. My daughter has school exams in the end of may, and the doctor wants her to be quiet, i understand that.

Thank you very much. Marie received an email from her doctor yesterday. She has an apointment see essayé and thursday for ivig because her hema wants her to be off prednisone quickly. And then? The doctor has spoken about rituxan as a new step...
I would prefer promacta. I'll advocate this way for my daughter. I'm worrying about side effects of rituxan like everybody.

Sorry, wednesday and thursday... It was automatic correction or something like that.

I don't have a lot of advice for you, but your daughter is on a very low dose of Promacta. Since she had a good initial response,
it sounds like trying to increase her dose to at least 25mg/daily might be a good move (or even higher, I didn't get a response until I was initially on 75mg/daily, so her dosage has been quite low and there is some room to increase it before giving up and trying another medication). You mention that she was born in Vietnam, and I have read the insert that discusses people of Asian descent starting at 25mg/daily instead of the default 50mg/daily because they tend to need less medication. I don't recall the medication insert saying anything about them being unable to take larger doses or being on such a low dose as your daughter (only 25mg one time a week for years is a really awesomely low dose! )

I guess overall I agree with what you are saying about giving the Promacta another try before deciding that it is no longer effective. Hopefully your doctor will be willing to give that a try before moving on to Rituxan. It sounds to me dosage-wise that you really haven't exhausted the potential of the Promacta, especially considering her overall good response to it. Keep us posted on how things go!

Thank you very much for the answer. Here are the news: my daughter had ivig wednesday, first time for her. Everything was fine, only some headache during the treatment and a bit nauseous in the evening. The platelets were 36000 so the second round was cancelled. The hematologist explained she had several cases this winter with babies and young people with 0 platelets which happens with ITP but she said it was surprising for her to see so many cases with 0 platelet. For these cases, it was hard to have a response. Several différent treatments were needed. She spoke about this virus for my daughter and thinks she had not a failure with Promacta but needs more treatment to avoid low counts and she hopes ivig will do the job for that. My daughter has now prednisone 30mg, five days, then 20mg, five days...and Promacta daily. I’ ll update in a few days.
Perhaps you think I’m saying weird things about the virus. But the hematologist really said she had several weird and severe cases this winter in Paris. For now, we are waiting for good news...fingers crossed I think you say, «  on croise les doigts », we say in French.
Thank you everybody for the kind and useful answers. I would like I could explain more and in a better way...

Steroids, Promacta, and IVIG. That combination can send counts very high in some folks. Excellent that the second day was cancelled. If she gets a headache, I would give her one aspirin without hesitation.

I'm a little surprised that the doctor has chosen adding IVIG to the mix over increasing Promacta from 25 to 50mg - even if your daughter is Asian descent. The risk, as noted above, is so much less.

Lau~ Your English is very good! Yes, as you said, viruses can and do cause ITP. Often the low platelets are temporary in children. Sometimes the counts will come back up within 6 months. I hope your daughter gets over this soon!

Thank you for your advice. Here are the news today: counts are 31000. Obviously ivig did not work. My daughter had only half a dose which may explain these low counts. She is tired and she has been suffering of headaches since last friday. Ivig were given last wednesday. She was told by the doctor this could happen. As she has Promacta daily, headache may be a side effect from that pill. Who knows?
Frustrating to think she could have two pills Promacta 25mg weekly with good counts ( above 50000/65000) for 16 months and now ivig+ prednisone 30mg + Promacta 25 mg daily give only 31000. I’ll update when I’ll have something new to share. Thank you everybody for all the answers.
Perhaps Promacta will work again. Perhaps she could try Nplate.
Perhaps some good news may happen... such a weird disease.

Thank you for the kind words. My daughter is 21 so itp may be chronic. She was diagnosed in January 2016. She had good response with Promacta. But something happened and we are in a kind of a crise for now. Promacta is no more working as it did before. I was afraid she could have high counts with ivig, Promacta and Prednisone, like Hal said. But it did not worth scaring for that, she is 31000 today. Let’s wait still...

Perhaps Promacta will work again. Perhaps she could try Nplate.
Perhaps some good news may happen... such a weird disease.[/quote]

Lau- You are so right there! Sometimes we can only wait and hope. Sorry your daughter is having headaches, I have gotten terrible headaches from IVIG and prednisone tapers.
I have had ITP since 2005 and while I try to figure it out and make sense of it I never seem to be able to.

Sometimes there is no good explanation for why things happen with ITP. I managed my condition one way for most of my life, then after having ITP and managing it for almost 30 years, something changed and I had to try something different. Just because she is needing more Promacta right now doesn't mean that she will need more in a few months. You don't know what might happen in the future so just treat the symptoms and the condition now and hope for the best. A count of 31,000 is good enough to be safe now and give her Promacta dose increase some time to take effect. If I remember correctly you only just increased to daily Promacta last week, and the counts that might reflect that change can take more than a week to show up for some people. Even if it always worked right away in the past, it may take longer for her body to adjust. On croise les doigts that her counts will continue to rise a little bit more. Bonne chance à vous (And really, vraiment your English is very good, keep updating us with your daughter's progress)

Thank you for the answer. I give you some news. Platelets were 14000 today. The doctor said my daughter is corticodependant for now and needs 40 mg daily to avoid low counts. She doesn’t want to let Marie with so much prednisone. So she wanted her to have Rituxan on Monday. She thought about N’plate and let us make our choice. It was not easy. Speaking with Marie it appeared she first wants Lo let the tiredness go away. She has no bleeding, but feels so tired. At the end, decided to try N’plate for two or three weeks, and then, after the exams, if necessary, she could try If you ave some good advice... thank you very much...

And then, after school exams, she could try Rituxan...sorry, I forgot the word.

NPlate and Rituxan are both good treatments to try for ITP. Are you guys sure that you want to give up on Promacta without giving it more time to work? You could go up to a 50mg dose for that (which is actually the basic starting dose for most people not of Asian descent). It's great news that she isn't having any bleeding. If you have active bleeding then it becomes more pressing to treat more aggressively to get her counts up. Since she is just experiencing fatigue, then you have more time to give treatments a chance to work.

Regarding trying the NPlate, the only thing I would advise is that 2 or 3 weeks is nowhere near enough time to see if it is going to work. NPlate has a range of dosages and some people don't see a response for 4 weeks or longer. It definitely takes time to find the right dose and achieve stability with the platelet counts. If you only want to give it a short try, I don't think it makes sense because you may conclude that it doesn't work, but really it just didn't have enough time to kick in. It's not like we have endless ITP treatments, so if you take one off the table of options, you want to be really sure that it doesn't work for you.

Regarding Rituxan, lots of people have had good results with this treatment, but again, it can take 12 weeks or more (or also sometimes less, there is no one expected response!) to start working. Whatever treatment you guys decide upon, try to have the expectation that you will give it time to work. Waiting is an option because she isn't having bleeding. I know fatigue is not fun, but for a few months, she can hopefully get some accommodations for her regular activities and make it through.

So nice you answered so quickly.
To say the truth, we are a little lost. Something is happening with Marie for now which makes her immune system to work too much, and we lost the comfort of Revolade two pills weekly with good results. The doctor tries to find a treatment to help her to be less exhausted.
Marie is really quite exhausted. Because of low counts which always gives her big exhaustion, because of prednisone, a drug with which she does’nt fell well, because of anxiety: she is young, she is really brave but all that is too much for her now, because of school exams, and so on. I told her the pdsa site is helpful. She listened to me and went to look there yesterday’ but did not log in. She has a better English as I have, by the way! She could speak with people and explain in a better way...
The doctor gave us options: rituxan, perhaps give N’plate a try, she is concerning by the fact that to have better counts Marie must have so much prednisone daily and she thinks it’s not a good option. She said Revolade may work in the future but for now is not helping ...it was such a mess in our heads yesterday in the evening after the call.
Marie wants to have her exams which are 30 May and the two ou three following days. She wants to be ok for that and then be ok for September because of school again. She wants to have her life back, but she understands the disease and the kind of disease it’s is, and she is not claiming as a child. She is really brave, but sometimes I know she is very very sad, and thinks it’s not easy for her.
So thank you again for being there, it helps a lot, thank’you for the advice, it makes sense, « to be patient » are the doctor’s words. Thank you for all the informations we can read there. I hope Marie will be there one day on her own to speak with you. I’ m sure it would be very helpful for her and she is a very good girl. I’ll give you news. Have a nice day.

Hi Lau,

I would try NPlate injections.

Personally it is the best treatment for ITP when it responds.

Eventhough it says weekly some people get so fantastic responses that it puts them through remission.

Another option is splenectomy she being young the effectiveness is high.

Hi Jay,
Thank you for your post.
We have chosen Nplate. First shot:next Monday. I’ll update.
About the splenectomy about which we spoke with the hematologist, without any pressure, just to have some thoughts about the next steps, the solutions, ... she said the same words as you did. But it was only to have words about what might be the other treatments.
And it’s not the plan for now.
PS: Here, they do indium test before.
For now, week end, some rest and let’s hope.
Thank you very much.

Lau~ I have been taking Nplate injections for a few years and have not had any bad side effects. It is my favorite ITP treatment-(I've had Rituxin, Promacta, steroids.) It takes about 2 weeks for the counts to go up for me- first week I get a little rise, second week usually up to around 50. I hope it works well for your daughter!

Lau, Nplate doses are a little different than Promacta since it is a liquid and is also given proportional to body weight. Nplate doses are integers between 1 and 10. One being the lowest dose. As I understand, 25mg of Promacta is roughly equivalent to a '2' Nplate dose. So hopefully the doc will start with a 3 or 4 Nplate dose since a 2 is what she is currently taking with Promacta. In my humble opinion, what she needs is a higher dose than current. It doesn't matter if it's from Nplate or Promacta.

Let me guess. The health care system there only allows patients to receive 25mg max dose from Promacta. Any dose higher, they require Nplate use - due to cost. Yes?

Lau.

I 've tried N Plate and Promacta. I find Promacta keeps my count more even than N Plate. It takes a while to work.
My count swung around all over the place on NPlate which eventually stopped working hence my swap to Promacta.

I'm in the UK, we get indium scans there too. Mine showed destruction of platelets in the spleen but I've still got it. At my age the risks are higher for splenectomy. However if I was younger I very much doubt if I would have had one. There is absolutely no guarantee it will work and still has side effects and risks associated with it whatever age a person is.

Thank you everybody for the answers, the kind words and the good advices.
Today, by the way, was the first day for Nplate. We’ll see I in a few days.
Prednisone 40 mg is given too, because counts were very low.
We don’t think about splenectomy. We spoke about this treatment, because it’s kind of a way to look forward.
I hope Nplate will work. Yes, Revolade gave my daughter rather steady counts with very few pills, two 25mg pills weekly for months, and it was rather easy. But now, something has changed with it. Perhaps, this drug may be effective once more.
I hope you’ll have funny time for the week end. The week was hard for us, and now the choice is done, it’s a little relief.
Thank you.

Hal, about « care system system there » which probably means care system in France, I really don’t know. Perhaps you’re right. The solution for the hematologist was Rituxan, but she understood we were not very happy with this treatment. So, she proposed to try Nplate. We have nothing to lose about trying this drug for a month.
Thank you for answering.

Curieux Lau, avez-vous déjà essayé Google Traduction?
translate.google.com/

Est-ce que ce qui suit a un sens pour vous? Utile?

Les doses de Nplate sont un peu différentes de Promacta car il s'agit d'un liquide et est également proportionnel au poids corporel. Les doses de Nplate sont des entiers entre 1 et 10. L'un étant la dose la plus faible. Si je comprends bien, 25 mg de Promacta est à peu près équivalent à une dose de Nplate '2'. J'espère que le docteur commencera avec une dose de 3 ou 4 Nplate puisqu'une 2 est ce qu'elle prend actuellement avec Promacta. À mon humble avis, ce dont elle a besoin, c'est d'une dose plus élevée que le courant. Peu importe que ce soit de Nplate ou Promacta.

Laisse-moi deviner. Le système de soins de santé permet uniquement aux patients de recevoir une dose maximale de 25 mg de Promacta. Toute dose supérieure, ils nécessitent l'utilisation de Nplate - en raison du coût. Oui?

Hello everybody, here are our news: 23000 today, 14000 last week. Nplate did not work a lot since there is 40mg prednisone daily, but it is better, a little better.
Next Nplate shot tomorrow.
I know it’ s stupid , but I can’t stop thinking the reason why suddenly everything changed and was worse.

Hal, if you don’t mind, I woukd like to ask you something: I read your table and I don’t know which row for you my daughter is.
When she was diagnosed en January 2016,she had a very strong response with prednisone. Now, prednisone is not working. So, what? Is it «  first initial response » for prednisone « good or poor » in her case?
Ivig for her did not work, even if she had half a dose a few days ago.

Just to know. Thanks if you can share your advice. Have a nice day or night... it’s evening there.