Medication question

[MyDede]

Is there anyone out there currently on Promacta?

[Cannie]

Yes, I am. I have been taking it for almost a year now. No side effects that I can tell.

I was diagnosed in January of 2017 with a platlet count of 4. After multiple blood transfusions, three rounds of IVIG and 4 rounds of rituxan they finally started me in promacta. I started taking 25mg with platlet counts around 30. My numbers went up initially but then came back down a bit so they upped my dosage to 50mg. At 50mg my Platelets didn’t go over 80 so they upped me to the max amount of 75mg. It took about 3 months for my platelets to get to a normal range of 150 but after about 6 months of 75mg my platelets were well over 250 every month so they recently lowered my dosage back to 50mg. My numbers went down a bit but are staying right at 150-175. I’m hoping to be able to get off of it at some point but who knows. My only complaint about promacta is the cost. It is 250$ for a one month supply. If it continues to let me live a normal life with zero side effects I will gladly pay the money monthly. Hope this helps!

[lillaa in reply to Cannie]

Please change you hematologist. You shouldn't take Promacta or NPlate to normalize you platelet count. You should keep your count at around 50k because that's how they're meant to be used, also, there is a risk of a stroke when you go over 100k on Promacta/NPlate.

[prudencepayes]

Yes, I've been taking promacta (called revolade here in the UK) for 15 months now and it has been very successful for me. Before that I had tried many drugs including prednisilone, azathioprine, rituximab, ivig, and mmf but nothing worked and even while taking these medications my count kept dropping below 10 thousand. I started revolade on 50mg a day and 2 weeks later my count was 340! I was immediately dropped to 25mg a day which brought the count down to about 200

Since then we have gradually reduced the dose and I now take 25mg twice a week. My counts have stayed at about 175 thousand. My haemotologist thinks that I am going into remission and this is supported by the results of the IPF blood test which show that far fewer platelets are being killed. She said she has seen this effect in a significant number of patients on this drug. Next week I stop the drug completely. Hoping all will be okay.

I know this is an expensive drug and I am guessing you are in the US. We are very lucky here in the UK because we have universal health care so it is free for everyone, but if you are able to try this drug I would say go for it. It has changed my life. Good luck.

[conquerator2 in reply to prudencepayes]

I am also on Promacta / Revolade but only recently. Nplate was very effective but we wanted to try something in pill form which would keep more reasonable, stable counts. Likewise so far its been smooth. I am on 50mg day right now. We tried to lower the dose now but that caused the platelets to drop. They do climb up slower than with Nplate but it's more convenient and should hopefully prevent spikes.

[Hidden]

I have been on Promacta for a little over 2 years. The first year or so it seemed to cause very mild headaches about 3 times a week, but those have gone away. I also experienced some mild joint aches for several months, but those have also gone away.

For most of the 2 years my platelets have been between 60 to 180. I have had a cold twice during this time, and that seems to make my platelet level drops quickly and severely. I had blood draw on about day 4 of the cold because I noticed a hematoma in my mouth. Platlets had dropped to about 8 and my Promacta dose was raised from 25 mg to 50 mg per day and it took about 1 1/2 weeks for my levels to go up to about 40. Last March I got another cold and I had to have IVIG to bring them back up (not fun) and then it took about 6 weeks to get my levels stabilized again - they went up to about 700 after IVIG, then tanked to 25. It seems to take my body about a week to see results from a dose increase, but only about 2 days to see a big drop if the dose is decreased.

My hematologist is great and understands that not everyone's body reacts the same way to dosage changes - mine does not always react the same way each time! She prescribes my Promacta in 12.5 mg pills. This makes it easy to change doses. She had me taking 4 pills every day of the week (this is 50 mg a day and a 28 pills total for the week), then 4 pills for 6 days a week and 3 pills for one day (27 pills total for the week). We keep dropping the dose by eliminating one pill every two weeks and my levels have been pretty consistently at 180. We are trying to get down to a safe level of 50 to 100 without a dangerous drop in platelets.

This may sound like a big hassle, but I feel completely healthy and work more than full time. I just take care to get enough rest if I feel tired. I do have to have blood draws often (35 this year so far) - especially if my levels are changing rapidly, but they are almost painless.

Hope that helps some.