Promacta anyone?

[nancy504]

has anyone been on Promacta pills for ITP? Ratuxan didn't work, so next we try this.

Would like to get an idea of what i'm getting into with these pills, as far as side effects etc.

[LifeafterITP]

I have been taking 50mg / day of Promacta (called Revolade or Eltrombopag here in UK) for almost 3 years. My platelet count was 2 when I was diagnosed with ITP. Other treatment could not raise my platelets to a safe level so I was offered Eltrombopag. Everyone reacts differently to drugs but I have no real side effects and lead a normal active life. My platelet count has never been lower than about 70 and is normally around 100 since being on this drug.

[slh1mom]

I take 50mg every other day. Platelets stay in the 90,000 range. Started promacta in January when platelets started dropping again after Rituxan infusions. No side effects that I'm aware of. It is really expensive and my insurance wouldn't cover the pills. Thankfully my dr had a patient that couldn't take it after she had several bottles filled (she was taking 50mg 3 times a day) and told his nurse to please let her know if someone needed pills so they wouldn't go to waste.

[takari in reply to slh1mom]

How can you take it 3 times a day with the dietary restrictions of waiting before and after taking promacta?

[slh1mom in reply to takari]

I have no idea. But that what was on bottle for her directions. My Dr has me wait 30 minutes to eat after taking mine. I have not had any problems doing it this way.

[ralph12]

I am on promacta right now. The key here is to make sure that you do not eat for 2 hours before and 2 hours after. They say only 1 maybe on each side, but promacta interacts with calcium, so I recommend taking the precaution as when I did not follow it, I would drop in plt count. It has worked well for me at 1 x 75mg tab per day initially that now has been reduced to once every other day and have been stable around 193 (*knock on wood*) for about 6 months now. Only side effect could be affecting liver function, so maybe chill on the alcohol when first starting and you get to know how it affects you. Good luck!

[Seafood in reply to ralph12]

Why does Calcium hurt? I feel like it would help with joints?

[Lynney11]

I've been taking Eltrombopag since February, 25 mg daily. I started on 50 mg daily and my count went up to 487! I then took 25 mg and my count has stabilised at about 120. I do not suffer side affects but my haematologist said one side affect is eye problems i.e. it could cause cataracts, but as I have had both eyes done already I don't have to worry. I was put on this drug after all else failed apart from romiplostim, but as it is difficult to store at the correct temperature whilst on holiday, I asked if I could be put on tablets.

[ITPAffecty]

On the same thread, I have another question on Promacta/Elthrombopag. Has anyone take these tablets while pregnant? Doctors say, it's never tested on pregnants. We are planning for second baby and this is the only medicine that works for me too but not sure if it's safe during pregnancy.

[takari]

I have been on it since Feb of last year and my platelets run in the mid 100's. I did have several side effects but they were all temporary and I don't really have any now. I do take prilosec every morning or I would have heartburn though. Started at 25 mg and am down to 12.5 mg daily. I take it in the evening and just stop eating at 6 and take it at 10 or when I go to bed. Good for weight control!!

[Seafood]

I have been on Promacta since July 2017. my count has gone up and down. I got the flu and it went up to 226. The dr. put me on 1/2 the pill to see if my body was fighting off the flu or acting normal.

Only thing good is I have lost 15 pds.

Bad, it causes achy joints and muscle pains, sleepless nights, and I feel old.

My count is 70 as of last visit last week.

[chlfunder-aol-com in reply to Seafood]

I have had a counts ranging from 58 - 68 for over 2 1/2 years with no meds for my ITP. Prior to that I was in NPLATE injections weekly for a year. What a relief not to have to take anything. Have you spoke to your doctor about stopping meds and seeing where your platelets go. I was afraid to stop meds at the time it was suggested but I couldn't be happier I did. No more body aches or weekly trips to the infusion center. Plus I was having blood draws every week to see where my platelets were prior to my weekly injections. I now have a blood draw once every six months before my six month appointment.

[Seafood in reply to chlfunder-aol-com]

Yes. I have always expressed my desire to get off the meds. However some drs will refuse to treat you if you stop meds.

I am curious to see how low they go with just taking 1/2 of

Pill