Promacta for thrombocytopenia

[medicalenigma]

Hello Everyone. I just wanted to start a thread on the miracle of Promacta medication for my thrombocytopenia. For years i was in and out of the hospital with real no hope for the future. My last stint in the hospital was for 50 days and the doctors in ICU were reading me my last rights. I knew when the Chaplin came in it was getting near. Platelets were 6000 and subdural hematomas were happening on both sides of my skull. Then my wife found Promacta. We asked the hematologist about it and he said he had not heard about its treatment for MDS. With nothing to lose, we discovered it worked. My platelets hover between 50000 to 100000 on 50mg a day and i have a life again. It appears to be a TPO antagonist. It is a relatively new orphan drug. I have been hospital free for a year and a half now.

http://www.us.promacta.com

Getting ready to try CBDs to help with my anemia and frequent blood transfusions. My MDS diagnosis is still up in the air. Many confirming BMB tests are negative for MDS.

[viperphil11]

Have you had any side effects from the promacta?

[Sally C]

Hi Phillip,
I would like to answer your question to medicalenigma. My husband was the first patient in a clinical trial at The NIH for Promacta for MDS patients. The NIH had so much success with their AA patients and Promacta they decided to try it with their MDS patients. After over 125 blood/platelet transfusions he has been in remission since summer of 2012. His last CBC in Feb., 2019 showed whites normal, reds over 12 and platelets 113,000. He had absolutely no side effects from Promacta which he took from the spring of 2011 to the summer of 2012. He has had no further treatments for his MDS since then. For the first time since diagnosis in Dec., 2008, Don's hematologist doesn't want to see him for 6 months. Before that it was monthly, bi-monthly or every 3 months. Nothing short of a Miracle.
All the best,
Sally

[viperphil11]

Thank you for responding. I was diagnosed with AA back in 2011 and had ATG treatment in 2012 with helped my red and whites return to normal but my platelets struggled to rise. They did get up to 78,000 but have since fluctuated from 15,000-50,000 for the past few years with my red and white staying in normal range. So he only took promacta for a few months? I thought you would basically have to take it everyday for the rest of your life. I head of bad side effects of it as well but I’m glad to here that he had none!

[Sally C]

Hi viperphil11,
You misread the duration of his taking Promacta. He took it from spring, 2011 to summer of 2012. Once his platelets hit 100,000 they started weaning him off of it due to concern of blood clots. They have remained in the 100,000 range with a few dips down to 75,000 range. His platelets were the most stubborn of the 3 blood lines - once getting down as low as 4,000. He tolerated it extremely well. Take care,
Sally

[viperphil11]

I started promacta on Friday 3/8/19. Is it common to have slight discomfort on the upper left side of abdomen as a side effect? It doesn’t really hurt but I have a little pain that feels kinda like pressure on the upper left side of the abdomen.

[Sally C]

I don't remember Don having anything like that. It is understandable to read possible side effects when starting a new medication. It could be as simple as gas. Please keep us posted.
All the best,
Sally

[Cheryl C]

Hi Phil - have you had your spleen checked lately?

[Sally C]

That is a really good question Cheryl!

[viperphil11]

I’ve been on promacta for 10 days and had blood work done today. Platelets are lower than they was before I started. They went from 16,000 down to 14,000. Not a big drop but I was expecting some rise. How long did it take to receive a response? My doctor raised my dose from 50mg to 75mg. Hopefully I will see some improvement soon.

[viperphil11]

Also I had a ultrasound done on my abdomen and all was normal. My doctor thinks the abdomin pain was just a side effect of the promacta. Spleen was normal

[Sally C]

Don started Promacta in the spring but didn't get much of a response until the fall. Also they incrementally increased his dosage to a max of either 125mg. or 150mg. which they had planned all along. I posted on Marrowforums quite a bit during that time. If you read my posts from back then it will give you a detailed account of his progress.
Glad nothing showed up with the ultrasound!
Sally

[viperphil11]

Thanks for responding. I was a little discouraged when I saw my lab results. I guess it will take a little longer for me to respond.

[viperphil11]

I was reading your past post about your husband. Was the atrial fluttering of his heart related to the promacta at all?

[Sally C]

As far as we know, no. There were some very stressful things going on at that time outside of his MDS which is what we attribute it to. Extreme stress can cause a-flutter/a-fib.

He had another episode of a-fib in Oct., 2018 - long past stopping Promacta in 2012. This time we believe it was due to coming off heart rhythm meds earlier in the year thinking it wouldn't cause a problem - but it evidently did. He is back on that medication now and won't come off it again.

[viperphil11]

Did he have any issues with cateracts while on the promacta or anytime after he was taken off?

[Sally C]

He has what they call "subcapsular" cataracts (behind the lens) which could have been due to the Promacta. However he's 73 years old and they are still small and not a problem. I am 68 with no Promacta and I have small cataracts. Most people acquire them as they age. I wish mine would grow like a weed. When they fix them they also correct your vision.
Take care and please let me know if I can answer any other questions.
Sally
p.s. I just looked back and saw you started Promacta on March 8 - just 11 days ago. I believe it is way too soon to expect much. As I mentioned, Don started in the spring and had to have a platelet transfusion in Aug. for a procedure. It wasn't until the fall that his counts started rising - and it brought up all 3 lines. His reds were almost as much an issue as his platelets - which got as low as 4,000. He had over 125 blood/platelet transfusions starting in Jan., 2009. Since Sept., 2011, 6 months after starting Promacta, he never has needed another transfusion.
I know how it is to want things to happen fast but patience is valuable in this situation. Being stressed can't help. I hope you have a good support group. Lean on those who can help but also do your best to have a positive attitude. There is every reason to have great hope. As I mentioned - The NIH tried Promacta on Don (MDS) because of their success with AA. I speak from experience - you can drive yourself crazy reading all the potential side effects. Once you educate yourself try to let it go. Look outward. It's not easy but we all eventually go through things that are so easy to obsess on. A positive attitude is probably the best medicine you can have.

[viperphil11]

I’m down to 1 pill left. I didn’t think to call the pharmacy to refill my promacta. It’s the weekend so the pharmacy is closed. It’s through a cvs specialty pharmacy that mails my pills so it’s going to take a few days before I recieve it. I’m going to miss a few days of my promacta. Would I have any side effects of missing a couple of doses? Thanks

[Sally C]

I have no idea as Don never missed a dose. It was too important for him to ever forget.

[Kevin88]

My husband recently started on Promacta. He seems more tired but other than that he is tolerating it well. His neutrophils are going up. Don’t know if it’s from the Promacta or the ATG he had in February.