Splenectomy Failure?

Hi Jasondema,
so sorry to hear that you have so difficult time in fighting with this condition. It is not easy, physically as mentally. But we have to pursue and keep a positive mind-set, first of all at the present moment. I believe that you will be a healthy woman after Feb6. Be brave. I wish you from the bottom of my heart a lot of luck during your operation and recovery. And of course a lot of platelets afterwards. Please do let me know about the outcomes.
1. Unfortunately, I didn`t have indium scan. In the country where do I live we don`t have that option. Two months prior a scheduled operation my counts were constantly very low and I had to receive ivig three days in a row every week. Also at that time I was breastfeeding every two hours day or night so it was impossible for me to go somewhere abroad an do that scan.
2. Never heard about it. Thank you so much for the info and the link you have provided. I will check do we have an option to do that blood test in Croatia.
3. No, never. At first my response was around 70K when I received IVIg/40mg three days in a row but with time they raised my counts at max 20K with the same dosage of IVIg. Anyway, IVIg seems to give better results after the splenectomy.
4. Thank you, will check that drug. Althought I would be the most happy to resolve my health issue with some natural remedy.

Hi! Today my counts are 9.
All in all 45 days on Promacta.
A week ago platelets were 24.
At the moment I`m taking Promacta50mg. Still have some side-effects.
Can we make a conclusion that this drug does not have any success in my case or we should be persistant for a while?
To make a conclusion, my question is: what next?

Right. If I'm counting the weeks correct, you were on 50mg of Promacta for 6 weeks as of tomorrow, Wednesday. 75mg in there for one week. Time to punt? Either now or very soon I would think. Switch over to Nplate? Maybe the doctor will start with a '3' dose and that will work.

Strange. That is two people now that have recently failed Promacta and are moving to Nplate. Flu season at work?

Dear Hal,
many thanks for your quick reply. You are right, counting well weeks and dosages - beyond amazing!!!!!!

My hemo said that that we will give it a chance to Promacta/75mg one more week. If there will be no response we will switch to N-plate.
Last two weeks no flu at all. Really don`t get it. What is helping and what is not. Hard to predict or say anything for sure.
I would like to know just one thing that I can relay on in raising my counts. I will persue my search.

Oh wow. Going to give 75mg another go? Taking a pill is easy, so I can understand making sure it isn't working before moving on. Not to worry. Nplate should work well.

IMHO you should give the Promacta a longer time. It can take a while to kick in.

How long? In your opinion?

Clia
I'd give it at least a month on 75mg. I see you mentioned side effects. What are you experiencing?

First of all upset stomach and diarrhea than symptoms similar to cold as pain in bone and muscles, lack of energy...
Anyone else sharing those symptoms or having some others?

When I was on 50mg had minor diarrhea and perhaps some feeling of reduced mental acuity. I think that bone issue has been reported a few times. It is good that you are able to stick with the 75mg dose for awhile to make sure.

Hi guys,
hera are the quick updates. Todays counts are 9, same as week ago. Will pursue with Revolade/Promacta (eltrombopag)75mg for a while, but not to long. Next is N-plate on the menu. I will receive IVIg just to raise counts a bit.
Have to say that I have change my diet to AIP for the last 5 days. As I move out all the dairy products I dont have digestive issues anymore.
Plus last six days were harsh. It is not easy to have period with counts below 10 - bleedings are heavy. Can that condition have effects on numbers?
Thanks

My 12 years old son was on 50 mg Promacta for 4 weeks and then increased to 75 mg for the last 6 weeks. Two weeks ago his count was 5K and last Friday was 14K. Our hemo officially declared failure for Promacta and ordered NPlate. This morning we brought NPlate to his office for first ingestion. Guess what? My son's count is at 206K. (Nurse already mixed NPlate, so $3000 just down the drain). So we will continue on 75 mg Promacta and check again in a week. Maybe Promacta just take that long to kick in.

Great your sons counts went up, that proves it takes a while for Promacta. Its possible his counts will stay up- some people go into remission with these drugs. They should never mix the Nplate before checking counts! That happened to me recently. They mixed the Nplate ahead of time, then I saw the doctor and he increased my dose. The pharmacist would have had to dump the first injection wasting $5000. But I insisted on taking the lower dose and began the proper dose the following week.
Good luck with what you decide Clia. I had side effects from Promacta- headache, brain fog, memory issues, so I switched to Nplate. I like Nplate much better, no side effects- it works well for me and I feel good on it.

Clia wrote: Hi guys,
hera are the quick updates. Todays counts are 9, same as week ago. Will pursue with Revolade/Promacta (eltrombopag)75mg for a while, but not to long. Next is N-plate on the menu. I will receive IVIg just to raise counts a bit.
Have to say that I have change my diet to AIP for the last 5 days. As I move out all the dairy products I dont have digestive issues anymore.
Plus last six days were harsh. It is not easy to have period with counts below 10 - bleedings are heavy. Can that condition have effects on numbers?
Thanks

Clia, how are things?

Dear Hal,
great to hear you, thank you for asking how things are going. I have some updates.

I made a pause between eltrombopag and romiplostim for around 2 weeks. The initial intention was to see how my organism will react without meds. My counts were at that time around 5 or even lower. I`ve received IVIg a couple of times during that period.

In the meantime I made the bone marrow biopsy, wide range of blood test, checked the h. pylori (everything like the day 1 when the doctors found for the first time (three years ago) that my platelets are low).
After all, the tests showed that everything is perfectly normal with me (bone marrow is producing vast number of platelets, the blood test are great, I`m negative to all the bacterial and viral infections, antiplatelet bodies were not confirmed in my blood serum etc.) except drastically low platelet number.
At least we know that I have only ITP and no other diagnosis.

For the last two weeks I`m on N-Plate. My dose is 60mcg / 0.12ml (I have 57kg). And FINALY (Thank you God) I have a positive reaction.
My counts are now stabile, around 60. I hope that this would last because with all the previous threatments I had zero success.
We will see how things will go in future. Its so hard to tell anything for sure. I hope I will be stable and had an opportunity to have maybe one more baby in the distant future (it is not allowed to stay pregnant with N-Plate). Will see. So far so good.

Three days after 2nd injection of N-plate my counts are 10.
What that does mean???
What next if N-plate failed?

I tried Romiplostim (N Plate ) for a year. Counts swung all over the place. I never stabilised on it. One week I could be over 100 then the next below 20. Gave it up as a bad job when my count dropped to 6 and I had to cancel a planned operation.

What did you do next regarding meds?

Clia wrote: ... antiplatelet bodies were not confirmed in my blood serum etc.) except drastically low platelet number.
At least we know that I have only ITP and no other diagnosis...

Clia, it is good that they went through all those tests again to make sure no one missed anything in the past. All one can do is try with Nplate as best one can. Not sure what to make of: 60mcg / 0.12ml. Normally Nplate dose is expressed as: the number of micro grams per kilogram of body weight. Is that maybe a '6' dose? With the recent low counts perhaps they need to go from a 6 dose to a 7 dose? I dunno. Give it some time and see if counts can stabilize with it?

The drugs beyond Nplate aren't exactly enticing. Many/most are down right toxic. Cyclosporine comes to mind. Have you heard of Fostamatinib, aka Tavalisse? That one is not so toxic but is new and not a lot of doctors know how to work with it. Also, it may not be available where you live.

I went on to Eltrombopag (Promacta), counts much more stable once dose sorted.

Promacta didnt work for me

Don't give up on Nplate. Great that you responded to it! It can take a while to find the right dose and get stable. I think you are on the lowest dose of 1mcg per kg. That is if you weigh 57 kg and are taking 60mcg of Nplate then I believe that is the lowest dose of 1. The dosing goes from 1 to 10. The counts will bounce around until it stabilizes for that dose.
Also the injections should be once every 7 days. And you should get your counts checked just before you get the injection. You say you checked your counts "3 days after your second injection". In my experience of being on Nplate for 5 years, that is not the best way to check counts. They really should check with a CBC on the 7th day just before you are to get the injection. If you check counts randomly it will be more difficult to find the right dose.

For me, Nplate doesn't kick in until 2nd or 3rd day after injection. I agree with what poseymint wrote. Labs same day right before the injection, unless of course you are bleeding all over the place...

Hal9000 wrote:

Clia wrote: ... antiplatelet bodies were not confirmed in my blood serum etc.) except drastically low platelet number.
At least we know that I have only ITP and no other diagnosis...

Clia, it is good that they went through all those tests again to make sure no one missed anything in the past. All one can do is try with Nplate as best one can. Not sure what to make of: 60mcg / 0.12ml. Normally Nplate dose is expressed as: the number of micro grams per kilogram of body weight. Is that maybe a '6' dose? With the recent low counts perhaps they need to go from a 6 dose to a 7 dose? I dunno. Give it some time and see if counts can stabilize with it?

The drugs beyond Nplate aren't exactly enticing. Many/most are down right toxic. Cyclosporine comes to mind. Have you heard of Fostamatinib, aka Tavalisse? That one is not so toxic but is new and not a lot of doctors know how to work with it. Also, it may not be available where you live.

Hello to all,

I was on dose 1 for two weeks (1 mcg per one kilogram of my body weigt, I have 58 kilos at the moment). After my counts crashed to 10 they gave me 40mg IVIg + 100mg steroids the first day, and tomorrow I`ve received 30mg IVIg+100mg steroids. My counts after those two days threatment were 75 (at Sunday). Two days after, at Tuesday (as usual), I received my N-plate injection.
Of course that we check my counts just before every single application of the drug.
My counts were 152. So this was kind of miracle, because I didn`t take any drug in the time period between SUN-TUE, except I started to take papaya leaf extract for the first time in my life. (I was really scared not to end up in the hospital again on such a low counts. I`m back to work after my parental leave with a small baby in the town where no one of my family members live. So is hard to organise someone to take care of my baby for more than hours I spend at my work place.)
Hemo was affraid that I don`t crash again so last time (third immplementation of the N-plate) they gave me dose 2, in other words 120mcg, althought my counts just before that were 152. At Friday, three days after my third injection (tomorrow) I will check my counts again. Will let you know.

poseymint wrote: Don't give up on Nplate. Great that you responded to it! It can take a while to find the right dose and get stable. I think you are on the lowest dose of 1mcg per kg. That is if you weigh 57 kg and are taking 60mcg of Nplate then I believe that is the lowest dose of 1. The dosing goes from 1 to 10. The counts will bounce around until it stabilizes for that dose.
You are right, I was on dose 1 for two weeks, but the last time they raised my dose to 2 pcg per 1 kg of body weight.

Also the injections should be once every 7 days. They are, once in a week, each Tuesday.

And you should get your counts checked just before you get the injection. We do that regularly.
You say you checked your counts "3 days after your second injection". In my experience of being on Nplate for 5 years, that is not the best way to check counts. They really should check with a CBC on the 7th day just before you are to get the injection. If you check counts randomly it will be more difficult to find the right dose. Hemo wants to check my counts twice per week. Three days after injection and just before they are going to give me a new one.

b2h wrote: For me, Nplate doesn't kick in until 2nd or 3rd day after injection. I agree with what poseymint wrote. Labs same day right before the injection, unless of course you are bleeding all over the place...

We do so. Thank you.

Clia, good to hear that the IVIG and steroid rescue worked well. You respond better when taking both?

I've never taken Nplate before. Others here are much more familiar. Still, I am a little surprised that the Doc didn't start with a higher dose than 1 after falling to respond to Promacta. I think I'd be pushing for dose increases more often than two weeks. I dunno.

Thank you Clia for the clarification. Your doctor is dosing Nplate exactly right. You should start at 1mcg per kg of body weight- just like he did. And you should stay on that dose for 2 weeks- thats because the doses of Nplate build upon one another. Its really important to give Nplate time to work.
For me, I started at 1mcg the first week and my counts went to 15. Then the second week dosing of the same 1mcg, my counts went to 35. Counts can jump up like that with Nplate because of the drug building up in your system. The first injection is still working when you add on the second injection. Over a few weeks time I had to increase the dose to 3mcg to get to the target range of 50.

When counts drop like yours did, I doesn't mean Nplate isn't working. Its likely you haven't been on it long enough to achieve stability. My counts stay between 35-55 usually, but sometimes there is a drop down to the 20's. I just ignore that and stay on the same dose because I've found that my counts are more stable if I don't change doses. In your case you are still finding the right dose. Your doctor seems to know what hes doing by increasing it slowly and giving each dose time to work. Good luck! and thank for sharing your story.

Hi Rors and Valentina:
The following is my story:
I had acute ITP with roller coaster platelet counts since 12/2012. I have been lower than 5K and as high as 600K. In 2015, I went to Dr. Marc Zumberg at the University of Florida, he put me on a combo of N-Plate and low dose Cyclosporine. This stabilized what was a very unstable condition. Over the next couple of years, I lowered my dosage of N-Plate from 10 Mcgms/Kgm to 1. Cyclosporine dosage remained constant. On Oct. 15, 2018, I visited Dr. Adam Cuker at the University of Pennsylvania. He thought I was trending toward remission. He took me off Cyclosporine, I went home and had one more N-Plate shot on 10/17/2018, and have not had either drug since. By the Grace of God. Right now I am living an abundant lifestyle in retirement. I just went Heli
-Skiing with my 27 year old son in Revelstoke, BC and had a blast. I have had two hips resurfaced also. My overall health is now very good and I work at it. I even have an occasional alcoholic beverage. I'm sure I can relapse and any comments on this would be welcome (obviously this is a new experience for me). I want to tell my story as I think it may help others. I will continue to monitor my health closely as from what I have read, relapse, as the disease itself, is unpredictable. I would recommend Dr. Zumberg or Dr. Cuker highly. Dr. Zumberg had suggested Dr. Cuker if I hadn't improved and I had another hematologist suggest Dr. Cuker when I was traveling and had to have an N-Plate shot at Rosemont Cancer Center in Buffalo, NY. I have overcome anxiety and depression as well during this journey. God Bless!

Talk to your hematologist about these treatments and Doctors. Hope this helps.

Jerry Spaniol