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Promacta or Nplate

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7 years 7 months ago #62597 by packh1@yahoo.com
Promacta or Nplate was created by packh1@yahoo.com
I am not sure if I should skip over Promacta and go right to NPlate .I'd appreciate any insights from those who have done either one.Steroids,IVIG haven't kept levels up for any stretch of time.Can't do Win-Ro or Rituxin I have had ITP for 30 years-was in remission 2 times once for 15 years with Cytoxin (was given for Breast Cancer and knocked out ITP too).Then I came out of remission and got IVIG which gave me another 8 years.
Thanks for any insights.

tricia50
  • 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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7 years 7 months ago #62599 by Sandi
Replied by Sandi on topic Promacta or Nplate
It does't matter which one you want to start with. It comes down to whether you would rather take a daily pill or go for a weekly injection. Sometimes it's easier to get counts stable on Promacta.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 7 months ago #62601 by Hal9000
Replied by Hal9000 on topic Promacta or Nplate

packh1@yahoo.com wrote: ... I have had ITP for 30 years-was in remission 2 times once for 15 years with Cytoxin (was given for Breast Cancer and knocked out ITP too).Then I came out of remission and got IVIG which gave me another 8 years.

Eight years from IVIG? Wow! You folks that respond to both steroids and IVIG have some amazing responses sometimes. If you don't mind me asking, how aggressive were the doctors thinking the cancer was? Was it in stage one? Did the doctor think that Cytoxin would be a pretty sure kill without going overboard or something like that? Or maybe he selected Cytoxin on purpose so that it might help with ITP?
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7 years 7 months ago #62614 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
Thanks for responding.I originally did prednisone for ITP followed by a splenectomy .Splenectomy gave me about 6 months.I was on prednisone when I got Breast cancer and adriomycin and cytoxin were the strongest chemo out there.I took it because I had lost my sister to brain cancer 18 mo.earlier,
So the cytoxin was based solely on the cancer.I was pleasantly surprised to have the ITP gone and get rid of prednisone too.My hematologist told me cytoxin is no longer used.It was quite strong and I have residual side affects after many years.
I am currenlty on dexamthesone while I decide on whether I go with Promacta or Nplate. I will not use steroids more than absolutely necessary the strength scares me and the side effects are difficult.Luckily, I have a patient ,supportive husband who puts up with the crazies while I a on it.Hoping to get insights on this forum.

tricia50
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7 years 7 months ago #62615 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
Thanks-I am leaning towards Promacta. Rather shots than injection.Just wondering if I have to stay on either for years to come or do they d/c treatment if platelets get stabilized.Thanks

tricia50
  • 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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7 years 7 months ago #62616 by Sandi
Replied by Sandi on topic Promacta or Nplate
Pack:

You had some good remissions before, so there's no reason to think it couldn't happen again. People do sometimes have remissions from Promacta. It can take months or years though.

You'll have to be careful and keep counts in the recommended range of 50k to 75k. The risk of blood clots rises if one has had a splenectomy. The drug should be dosed to try to maintain counts in that range.
The following user(s) said Thank You: packh1@yahoo.com
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 7 months ago - 7 years 7 months ago #62624 by mrsb04
Replied by mrsb04 on topic Promacta or Nplate
Pack
I've done both.
N plate is easy as it is only once a week, over here in the UK we self administer rather than the hassle of going somewhere for the shot. My counts were all over the place whilst I as on it up and down like a yoyo. After a year I suddenly lost all response to it.

Having been on Promacta for a year now I have to say I much prefer it. Counts are much more stable. It can take a while to get the dose sorted out but I would definitely suggest you try it. Don't be put off by the dietary restrictions they are easy to get used to. If you take it last thing at night before you go to bed, as I do, all you have to remember is no dairy/ high calcium food or zinc supplements in the preceding 4 hours and nothing to eat for the last 2 hours.

Some people take it in the middle of the night thus negating all dietary restrictions. I tried this but got fed up with an interrupted sleep pattern.
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7 years 7 months ago #62625 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
Thank you for your helpful reponse.I am leaning towards Promacta as my first choice and NPlate as my second.Could you tell of any bothersome side effects?I hear of weight loss as a posssiblity.I would not want to lose 10 lbs.I am at my ideal weight .curently.Do you get to d/c the Promacta at some point?It is a pricey co-pay here even after some help (we make too much to qualify for free.I don't mind a co-pay but $300-400 is a bit steep.
My current count is 15 so they are getting antsy for me to make a decision.Posts like yours will speed up the process.I hope you have continued success with Promacta.

tricia50
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 7 months ago - 7 years 7 months ago #62630 by mrsb04
Replied by mrsb04 on topic Promacta or Nplate
I have had a slight loss of appetite but nothing drastic and my weight has remained completely stable.

I'm on 25mg/50mg Promacta on alternate days. I have been on this dose for last 5 months. Over the last 3 months my counts have been around 70. Which is fine.

I've now been promoted to 6 weekly blood tests. It took me quite while to stabilise the dose for a safe count as I was also trying to taper off steroids.
I've also stayed on 3mg of Pred a day for the 5 months and count has stabilised nicely. I may well recommence steroid taper next month.
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7 years 7 months ago #62636 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
6 weekly blood tests? wow.Do you have a pic line?I have small difficult veins and weekly draws have become a problem finding a different vein.Currenly I have a pic line.

The steroid I am on is 4 days 40mg a day then of. No tapering.It works as I stated before the side effects are tough.

I work at keeping my spirits up and avoid stressful people and situations.No room for negativity in my life.
take care.

tricia50
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7 years 7 months ago #62637 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
6 weekly blood tests? wow.Do you have a pic line?I have small difficult veins and weekly draws have become a problem finding a different vein.Currenly I have a pic line.

The steroid I am on is 4 days 40mg a day then of. No tapering.It works as I stated before the side effects are tough.

I work at keeping my spirits up and avoid stressful people and situations.No room for negativity in my life.
take care.

tricia50
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 7 months ago - 7 years 7 months ago #62641 by mrsb04
Replied by mrsb04 on topic Promacta or Nplate
No I don't have a picc line thankfully.
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7 years 7 months ago #62647 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
I hear you.I hope to be done with it soon.On Promacta are blood tests more than weekly then taper off?I go for a second opinion on the 5th then most likely will start Promacta .I appreciate your sharing your experience to help others-like me.!

tricia50
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 7 months ago #62665 by mrsb04
Replied by mrsb04 on topic Promacta or Nplate
I had weekly bloods to start with then fortnightly, monthly and now having them every 6 weeks.
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7 years 7 months ago #62666 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Promacta or Nplate
Thanks for the info.It sounds easy enough to manage.

tricia50