Eltrombopag(Promacta) Or Romiplostim as a First Line Treatment

From what I know currently, if I had to do this again this what I would have done the following-

1. Take Prednisone for 2 weeks to see whether platelets respond to the treatment. Apply for NPlate approval right away for insurance.If Prednisone does not work then quickly taper it off.

2. Try NPlate for 4 weeks and if it starts responding then be on NPlate. If not move onto to next step. Also if you are responding to NPlate then there is no reason to take it every week just do your weekly cbcs and only take if platlet count is below 50.

3. Try Promacta for 4 weeks if it starts responding be on that.

4. When either on step 2 or 3 for more than 6 months, even though you get a response but does not put you through remission then combine it with rituximab.

5. If none of the above steps work , it is 12 months after diagnosis and if you are under 50 then it is okay to try splenectomy.

Lifestyle Changes
- Alcohol abstinence is a must. (Liver has too much involvement in platelet production so don't take any chances)
- Exercise is a must, get back into shape. (Do strength training for at-least 50% of your workout)
- Extreme Dieting is a big no no. ( I used to skip breakfast).
- Try to drink a Protein shake with all the essential nutrients, I think it has better absorption than pills. I drink MYOPLEX Original one a day.

Wouldn't you want to include abstinence from alcohol and lots of exercise?

Abstinence from alcohol and exercise made not a scrap of difference to my count

Romiplostim made my counts swing all over the place
Early days on Eltrombopag but preferring as it seems to offer more stable counts
Cannot comment on Rituximab as no experience of it
Would not part with my spleen

jayinchicago wrote: From what I know currently, if I had to do this again this what I would have done the following-

1. Take Prednisone for 2 weeks to see whether platelets respond to the treatment. Apply for NPlate approval right away for insurance.

2. Try NPlate for 4 weeks and if it starts responding then be on NPlate. If not move onto to next step.

3. Try Promacta for 4 weeks if it starts responding be on that.

4. When either on step 2 or 3 for more than 6 months, even though you get a response but does not put you through remission then combine it with rituximab.

5. If none of the above steps work , it is 12 months after diagnosis and if you are under 50 then it is okay to try splenectomy.

I personally agree with the order of treatments for the most part. TPO-RAs are a good second choice if Prednisone doesn't work quickly. However, I would have to say that your timeline is WAAAAYYY too short. I don't think you can know if "it works" or "you get a response" in only 4 weeks, that wasn't the case for me at all. By jumping quickly into the next treatment you may be muddying the waters by "getting a response" on the new treatment that is actually a delayed response to the previous treatment. Also, combining treatments would be something to try after trying single treatments. So Rituxan by itself would be something to try before combining things, in my opinion.

And having had a splenectomy, I wouldn't recommend that to anyone.

I also agree with the order but would nix #4 and #5. I wish that the TPO's would be more first line because they seem to work so well for so many. Most people feel like they finally get their lives under control again after using the TPO's. You also have to give them enough time to work.

I wouldn't combine Rituxan with a TPO because if counts rise from Rituxan and you're using a TPO, you're setting yourself up for a blood clot. My counts went from 3k to 150k in a week after Rituxan. Adding a TPO in there could have been dangerous.

Hello Hal,

Yes, I would include that.
- Alcohol abstinence.
- Exercise is a must, get back into shape.
- Extreme Dieting is a big no no. ( I used to skip breakfast).
-

mrsb, a hypothetical for you.

As I understand, alcohol consumption (can) reduce Thrombopoietin production by the liver. If one has antibodies against Thrombopoietin, and is destroying it, wouldn't alcohol consumption then have no effect on counts?

Interesting theory Hal

I suspect the reason why Jay mentions 6 months in step 4 is because of potential loss of NPlate response. I think one of the studies he has posted, for those that did loose response, it occurred after 11 months for the majority. mrsb, how many months were you on NPlate before loss of response?

12.5 months Hal

Alcohol consumption seems to have no effect on my count either ,thank goodness!