Started Promacta February 2017

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?

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.

It would appear I posted same thing twice . I cannot delete this repetition nor can I edit and submit as an empty box

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.

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.

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.

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.

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.

Three cheers for Promacta! Gotta love that stuff.

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.

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!

Feeling much better thank you poseymint. Accidentally cut finger this morning with minimal bleeding so hopefully count is on the way up again.

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.

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/

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).

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.

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?

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.

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!

Been here before !!!!
Routine bloods this morning at GPs ready for Monday's appointment with haemo.
Frantic phone call from on call haemo reg at 8:15 pm count is 8 would I go in.
Absolutely not I am asymptomatic and about to go to bed as on duty at in less than 10 hours. All you will do is fill me up with steroids. I can do that at home.
I will take 5mg of Pred stat and take 10mg for the next 2 mornings & 7.5mg on Monday before clinic.

I suspect looking after Dad has caused the crash. 8 weeks ago he was a fully independent gentleman. He has had to come to terms with a new way of life. It was a very difficult 2 weeks, physically, emotionally and psychologically for both of us.
He was discharged inappropriately without the proper equipment and support services in place. I had to fight tooth and nail to get everything in place before I had to come back home. Dad has done remarkably well but it was very stressful and my diet went out of the window.

Wow! When my mom had her stroke, she wasn't allowed to be discharged until we had everything in place for her!
Sorry to hear your counts have dropped!

Wow, Mrs. B--so sorry that life has been so stressful for you. I remember well the years worrying about my aging parents. When you take the extra pred, does that mean you will need to start a new taper?
You mention diet--do you feel a specific diet has helped you maintain your counts?

Cindy
I will be putting in a detailed complaint to the hospital.

Karen
I will be back down to my 2mg a day of Pred within the week. I may well have to up Promacta to 50mg a day for a few weeks. That decision will be made after my count on Monday.
As for diet I have a history of anorexia & when I’m stressed I eat very little. Now I am back home it will get better. I’ve just totted up today’s intake and am pleased with what I have managed.

mrsb I'm so sorry your count hit the gutter - but I am so glad you have no symptoms!! You had quite a time of it getting your Dad taken care of, know he is so thankful you were able to be there to help. Great he is doing well!

Take care of yourself now!!

Thank you Mel.
This is only the second time count has bottomed out so dramatically since starting Promacta. Last time after 10mg Pred for 2 mornings it was back in the low 30s so I'm keeping my fingers crossed.
Interesting that before taking Promacta I would know once it was below 20 as I would very tired and frozen stiff.
I'm exhausted anyway from looking after Dad but I never felt cold. I did notice a bruise on my wrist on Wednesday but had whacked it on the car door. First inkling I had for real was the bruise after blood test yesterday morning.

My count has gone up to 16 after 3 days of 10mg Pred.
Haemo asks me what I'd do . 'Eltrombopag up to 50mg/day & get pred back to 2mg/day ASAP is my preference and I will not reduce my pred further until next time I come to clinic, but if my count shoots back up and stays above 100 for 2 counts I will drop my Eltrombopag dose dependent on how much above 100 my count is.
That plan was ratified so long as I have counts again on Friday and Monday then review frequency as she doesn't want counts too high. Suits me, I'm at work on both days and can choose my own phlebotomist. .
Asked me what I though had brought it on and agreed wholeheartedly agreed it was the repercussions from the Dad situation.
Fully supported my decision not to take up the offer of a hospital bed on Friday, and agreed with my emergency remedy but suggests extra 15mg the first dose next time. I can go along with that.
So reassuring to have such a haemo. Goodness only knows what I'll do when she retires.

Well that is good news - 16k! I like your hematologist - she doesn't want your count too high, but most of all she trusts you which is super! I do like her suggestion to start your emergency remedy with 15mg prednisone to kick start things. She isn't going to retire yet is she? Can you pick a hematologist or must you take who is given you - if you can pick maybe she has someone in mind for you when she does retire [that's what I did - knowing my beloved hematologist was getting close to retirement age I asked him if he should retire who he would suggest I use, he gave me a name and bless his precious heart it wasn't long after that he had a heart attack and died - I still miss him a lot, he was one in a million & after he died his wife sent each one of us a letter telling us what had happened and how much he loved his patients].

Mel she's only a few years younger than me. I will definitely ask her who to shift to when she does go.

Yes so lovely to have a hematologist who listens and respects your good decisions. My rheumatologist wants me also to start at 15mg if I need a prednisone rescue. She likes a 9 day treatment of 15.15 15 10 10 10 5 5 5. Its an interesting idea but I prefer your 3 day of 10mg Mrsb. I think 9 days is too much.

I recently had a muscle spasm in my neck that was very painful. I couldn't work without Ibuprofen, Tylenol didn't help. My counts were 36 and 400 daily Ibuprofen was causing big bruises all over. I started taking 10mg prednisone to sort of counter the Ibuprofen? I don't even know if that is a valid thing to do, but it did bump my counts up to 56. Then I asked my hemo's office to increase Nplate, he was on vacation and too much trouble to explain it all to the nurses. So I ended up taking 10mg prednisone for 2 weeks- not a problem, and my counts went up to 109. Neck pain subsided and I stopped Ibuprofen.
I began to taper the pred by taking 5mg, but the next day I forgot to take any prednisone. Later afternoon I was at the grocery store and was feeling achy like I was getting the flu/viral. Then I remembered yikes! I'm withdrawing from prednisone! So I took 5mg right away. But that was interesting in that I now know that if I take 10mg for 2 weeks, I have to taper off. (I took 5mg for 2 days then 2.5 for 2-3 days and that was enough of a taper.)

Poseymint..
My GP on rescue doses and tapering. 'if you take a rescue dose for less than 6 days you can go straight back to your original dose or stop if you were off them completely prior to the rescue. If you take more than 5 days worth of rescue you must do a taper over the following week.