Welcome, Guest
Username: Password: Remember me

TOPIC: Started Promacta February 2017

Started Promacta February 2017 3 months 3 weeks ago #65302

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1196
  • Karma: 10
  • Thank you received: 143
Here in the USA, 12.5mg is almost the same price as 25mg. If I were paying, I'd be splitting 25mg pills for sure. Splitting has no effect on my counts.

My guess is that Novartis doesn't want pill splitting because they crumble fairly easily. They probably did that on purpose. It's a 'orphan' drug. Recall that they also have a powder for administration to children. The powder is mixed with water. I wonder if one could dissolve the pills in water. Then split the volume of water. But, could get reduced benefit/strength. Don't know.

Would they prescribe 75mg every other day to you? Then split that?

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 months 3 weeks ago #65305

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Powder not available in the UK. According to this 2018 paper www.ncbi.nlm.nih.gov/pmc/articles/PMC5858473/ "Although a powder was available for oral suspension for children who participated in clinical trials, this formulation is not yet available for commercial use, but it is expected to be available soon."

There is no NHS indicative price available for 12.5 mg tabs because they have to be imported from the USA. The NHS does deals with drug companies to get drugs at a cheaper cost. Obviously didn't manage it for 12.5mg ones as not on the drug tariff.

25mg tabs are £770 for 28 tabs, 50mg double that and 75 mg treble therefore 25mg x 1.5 tabs costs exactly the same as 75mg x 0.5 tab.
Drug tariffs over here are extremely complicated when drugs are only available under a brand name.
The sooner the patent expires and generic Eltrombopag becomes readily available the better for all except the money grabbing drug companies.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 months 3 weeks ago #65306

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
It would appear I posted same thing twice . I cannot delete this repetition nor can I edit and submit as an empty box

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 months 1 week ago #65407

  • karenr
  • Offline
  • Posts: 386
  • Thank you received: 39
Kaiser members must get promacta through a "specialty pharmacy." When I asked the specialty pharmacist if i could cut the tablets in half, she said yes. Mine is not coated, however. Nor is it scored for cutting in half.

Please Log in or Create an account to join the conversation.

Starting Promacta tonight. 2 months 3 weeks ago #65491

  • Margaret k
  • Offline
  • Posts: 156
  • Thank you received: 33
Glad to say I am very well after my two operations for early Ca in the past 6 months and my broken arm is steadily improving.
Now on a dose of eltrombopag 50 mg 3x week and 25 mg 4x week and last count was a comfortable 95. My count had soared to 224 after my last operation in October but my haema said that a big rise is not unusual after surgery even in those without ITP.It didn't last at that thank goodness. It is great to be stable on a lower dose . It is now 3 years since I resumed eltrombopag on a dose of 75 mg daily with a count of 3. My count increased gradually for the first two years and has been about 100 for a year during which time my dosage has been very gradually reduced to its present level. I think the way forward is not to chop and change the dosage but to make very small changes gradually. It has worked for me anyway.

Please Log in or Create an account to join the conversation.

Starting Promacta tonight. 2 months 3 weeks ago #65497

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Pleased to hear you are well Margaret.
I am going to take it slowly with Eltrombopag dosing. Count 78 a couple of weeks ago which is completely acceptable. Retest on Jan 7th.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 2 months 1 day ago #65604

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
8 weeks on 37.5mg/day, 3 counts in that time between 68-80, appetite is back with teeny weight gain and I'm sleeping better.
Saw haemo today who said 'nice counts, what dose are you actually taking? ' I came clean about the pill cutting. She was absolutely fine about and prescribed 25mg x 1.5 tabs/day. Pharmacy didn't bat an eyelid and supplied me with a new pill cutter.
3 months of 2mg/day Pred. Haemo said I could restart taper, I will but not for another 3 weeks. I doubt the dose drop would affect my count but need a count of 50 in 3 weeks for a steroid injection in my hand.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 2 months 17 hours ago #65617

  • Margaret k
  • Offline
  • Posts: 156
  • Thank you received: 33
Good to hear you are doing well and it's ok to cut pills. My last count was still at 160 so I am now taking 50 mg x2 and 25 mg x 5 per week.
Looking forward to being 25mgx 7 soon and maybe cutting pills by end of summer.
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 1 month 3 weeks ago #65627

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1196
  • Karma: 10
  • Thank you received: 143
Three cheers for Promacta! Gotta love that stuff.
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 weeks 3 days ago #65887

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Full of cold a couple of weeks ago, count dropped to 32 so steroid injection cancelled. Missive from haemo yesterday..continue on 37.5mg Eltrombopag and up pred to 5mg a day with a retest in a fortnight. I don't think so. Completely asymptomatic and cold has gone. I'm staying put on 2mg a day.

Please Log in or Create an account to join the conversation.

Starting Promacta tonight. 3 weeks 3 days ago #65892

  • poseymint
  • Offline
  • Posts: 499
  • Karma: 1
  • Thank you received: 113
I strongly agree Mrsb!! You have fought hard to get down to 2mg pred and don't want to lose ground. I totally understand. Doctors generally don't understand how hard it is to taper off of prednisone. I tend to not make changes when my counts drop, just wait it out. You understand how these drugs work and will do the right thing. Funny my counts go higher when I have a cold. Hope you are feeling better and counts bounce back soon!
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Starting Promacta tonight. 3 weeks 3 days ago #65893

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Feeling much better thank you poseymint. Accidentally cut finger this morning with minimal bleeding so hopefully count is on the way up again.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 weeks 2 days ago #65899

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1196
  • Karma: 10
  • Thank you received: 143

mrsb04 wrote: Full of cold a couple of weeks ago, count dropped to 32 so steroid injection cancelled. Missive from haemo yesterday..continue on 37.5mg Eltrombopag and up pred to 5mg a day with a retest in a fortnight. I don't think so. Completely asymptomatic and cold has gone. I'm staying put on 2mg a day.

Up to 5mg? Oh my! That doesn't sound productive.

With Turbo's comments, your comments, and my own experience with Danazol, have to wonder what is going on with count drops associated with congestion. Perhaps some congestion is not from a cold/flu. Maybe it is a side effect from the immune system's inflammation reaction and subsequent destruction of platelets. And then when an actual Flu bug comes along, as in Posey's case, Flu can cause an increase in counts on occasion.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 weeks 2 days ago #65900

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Beats me Hal

I've just gone through my book (my haemo has all her patients keep a book to monitor counts and make their own comments.)
In the last 4.5 years I've had 10 upper respiratory viral infections, and 4 bacterial infections requiring antibiotics- 2 dental, 1 cellulitis after a minor scratch to shin and a nasal follicular infection. Each virus has resulted in a platelet count drop where as the bacterial infections haven't. This may go some way to explaining it. www.ncbi.nlm.nih.gov/pmc/articles/PMC4270245/

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 3 weeks 5 hours ago #65919

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1196
  • Karma: 10
  • Thank you received: 143
Oh wow. That is quite a study. A real eye opener. There is only one author but apparently she really knows her platelets.

From the study, it looks a lot easier now how one can develop ITP. All these different viruses can attach to different points on platelets. Hitching a ride on them for distribution/spreading. In my TPO antibody case of ITP, I wonder if it was the Chickenpox virus, TPO, and platelets all together which, long ago, fooled my immune system into thinking the combination is just as evil as Chickenpox alone.

A couple of things were eye catching.
"
This so called idiopathic thrombocytopenic purpura (ITP) or platelet autoantibody-induced thrombocytopenia has been described for HCV, HIV, CMV, EBV, hantavirus, varicella zoster virus, herpes viruses, and severe acute respiratory syndrome coronavirus.
"
Of course, varicella zoster virus is Shingles/Chickenpox. And then there is this part on megakaryocytes.
"
... infection of megakaryocytes with hantavirus induces the up-regulation of human leukocyte antigen (HLA) class 1 molecules on the megakaryocyte surface, which leads to cytotoxic T-lymphocyte-mediated destruction of megakaryocytes.
"
Maybe the Hantavirus and Chickenpox both together triggers megakaryocyte ITP antibodies (row 4).

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 1 week 3 days ago #65977

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Count 40 this morning. Not changing any doses yet. Off to look after my 89 year old father for a fortnight to see how he copes following discharge from hospital following 6 weeks intensive rehabilitation after suffering a stroke.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 1 week 3 days ago #65979

  • MelA
  • Away
  • Posts: 162
  • Karma: 1
  • Thank you received: 42
mrsb04 - I am sorry your father had a stroke, what a blessing that he is now recovered enough to be discharged! I hope all goes well for him, and you!

Just curious - with all those infections you have had the past 4.5 years do you have CVID or a low Immunoglobulin G?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 1 week 1 day ago #65986

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1118
  • Karma: 7
  • Thank you received: 250
Bless you Mel.
Every test for almost everything is negative apart from platelet count. I think infections initially due to my poor nutritional state (anorexia post husband's death; it took me me a long time to rebuild myself) and then I'm blaming the steroids.. the lower the dose of them the further apart any infections have been.

Please Log in or Create an account to join the conversation.

Started Promacta February 2017 1 week 1 day ago #66001

  • MelA
  • Away
  • Posts: 162
  • Karma: 1
  • Thank you received: 42
mrsb I have a low Immunoglobulin G, actually it is at the treatable level but since we feel gamma globulin triggered my ITP I'd rather not have to do any IVIg - and [knock on wood] I haven't had many infections since the low IgG was discovered so we are taking a wait & see approach. That's why I was wondering about you.

I can't imagine losing my husband, bless you! You take care now - enjoy the time with your father!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo