Promacta Side Effect Long Term?

Can anyone tell me their experience(s) with Promacta long term? I've had unpleasant side effect for the 2 weeks I have been on it and am wondering if these ever diminish. Thank you!

penlyn63 wrote: Can anyone tell me their experience(s) with Promacta long term? I've had unpleasant side effect for the 2 weeks I have been on it and am wondering if these ever diminish. Thank you!

I've been on Promacta for well over a year now, and will give you my experiences with it. During the first month, I experienced some mild nausea. I was kind of excited because I thought maybe that would help me lose some weight, lol. After that first month, pretty much no side effects at all and the nausea disappeared. For a brief period I had increased my dosage to 75mg, and during that time I felt like my vision had some changes. Eye strain type symptoms, I guess you would call them. I subsequently decreased my dosage and have been on straight 50mg for many months now. No further side effects. I just take my pill and forget about it.

I would say after the first month, see what side effects persist. The ideal count for Promacta and NPlate is 50,000 platelets. Just anecdotally, it seems that people have worse problems with side effects when their counts are too high (above 100, 150 range). Most people complain about headaches, but generally say those get better once they decrease their dosage and get their counts closer to the 50 target range. Everyone is different though, so you'll have to see what persists for you. Hopefully nothing after the initial adjustment period!

I have been on Promacta for most of the past 5 years and have had no symptoms that could be seen as side effects. I do have some muscular aches but they are more to do with being 70 and having had a herniated neck disc and a discectomy and fusion operation. I get my liver function checked every 3 months but so far no problems.

Thank you. I ask because my insurance company still has not approved me for this drug. I had a 2 week sample from my Hemo that I've been taking while we appeal my denial. I've had a constant headache since my first dose. I can take something for that and it goes away, but comes right back when the med wears off. I don't want to be medicating myself forever for headaches either! I have muscle aches, nasal pain, and the tips of my fingertips literally burn. After one week on 50 mg my count went from 16 to 194. So the second week I cut back to 25 mg. Today I was at 156. I don't think I've been over 100 in almost 18 months, and that was right after my first Rituxan treatment. Today, because of the side effects, we decided to keep it at the 25 mg and take it every 3rd day. I'll have a CBC in 7 days and another in 14 days. By that time we should know if I'm going to get approved or not. I can power through the side effects if 1.) I know they don't last forever or 2) if they may lessen. I have never had any side effects from anything so this is disappointing for me. But I don't want to continue to appeal the denial if this drug is going to make me crazy with pains either!

penlyn, I don't recall anyone mentioning nasal issues. As for the finger tips, someone mentioned that Promacta makes your finger nails grow faster. I think mrsb04 mentioned it, not sure. That was the first I'd heard of that symptom also. I've mentioned on another thread that low dose Aspirin seems to work amazingly well for me to tame platelets and headaches when on Promacta. Others have commented no special attributes for Aspirin, so the drug itself may be the issue. I assume your doc is checking liver AST and ALT values.

About your counts. Recall that I had a 193 count after 11.5 days on 50mg. Like you, I went to alternate days for a week. My count was then 167. After that, I went to every third day too, but didn't do as well there. After two weeks of every third day my count was 56.

Hope you get insurance approval soon. Do you suppose you got your contraband Promacta from your doc because your doc thought he could get the approval?

Hal, I have read of people who have had cold symptoms, dry nasal passages and dry eyes as side effects. I know the headache and general body aches are fairly common. I also know that numbness or tingling in the extremities happens. I'm assuming this fingertip thing is some subset of that. The only thing that is really getting to me at this point is the constant headache.
I keep reading about you and others taking low dose aspirin. Since aspirin is a blood thinner, I'm not sure why this is allowed for someone with ITP. Is this only when you're platelets are too high? I'm restricted to acetaminophen. Advil is my wonder drug and I had to give it up.
My insurance company continues to deny my coverage of Promacta... since I have not had my spleen removed. Both my Dr and I are continuing the appeals process. But I didn't want to keep the battle going if this headache thing continues to be such an issue. I was hoping someone here would say, "it gets better!" Or that maybe I was having all these reactions because my platelet count is higher than it's ever been! When I'm at 16 I feel great!!

Interestingly my finger nails have grown quicker since using Eltrombopag. A desirable drug side effect, that's a new concept !!
You are correct Hal. That was me posting in May.
I've had 5 colds since starting taking it in February but nothing else to report.
.

I would not take aspirin unless 1) I had approval from my doctor and 2) counts were stable above 50k. The risk is too great for an unstable patient.

penlyn63 wrote: ... I keep reading about you and others taking low dose aspirin. Since aspirin is a blood thinner, I'm not sure why this is allowed for someone with ITP. Is this only when you're platelets are too high? ...

Yes, 12.5mg keeps the counts down and the headaches at bay for me. Things do get better with lower counts/doses. Also, being on straight 12.5mg is even better than alternating days of 25mg. Your counts are pretty close to following mine so 12.5mg should work for you as well.

penlyn63 wrote: Hal, I have read of people who have had cold symptoms, dry nasal passages and dry eyes as side effects. I know the headache and general body aches are fairly common. I also know that numbness or tingling in the extremities happens. I'm assuming this fingertip thing is some subset of that. The only thing that is really getting to me at this point is the constant headache.
I keep reading about you and others taking low dose aspirin. Since aspirin is a blood thinner, I'm not sure why this is allowed for someone with ITP. Is this only when you're platelets are too high? I'm restricted to acetaminophen. Advil is my wonder drug and I had to give it up.
My insurance company continues to deny my coverage of Promacta... since I have not had my spleen removed. Both my Dr and I are continuing the appeals process. But I didn't want to keep the battle going if this headache thing continues to be such an issue. I was hoping someone here would say, "it gets better!" Or that maybe I was having all these reactions because my platelet count is higher than it's ever been! When I'm at 16 I feel great!!

Insurance companies sure are a pain. I hope you can get your promacta to go through since it looks like you have a really great response to it. Regarding your headaches, I think that spacing out your dosage as your doctor is suggesting is a great idea. Your counts are still too high even on 25mg, which bodes well that you will be able to get away with a really small dose! Maybe 25mg every third day will get you closer to the target count of 50 and help with the headaches. I sure wish I could get such a great response from a small dose :lol:

Regarding the baby aspirin, I have never taken it and probably never well. Once I got my ITP as a kid, my doctors pretty much took Advil/Ibuprofen and Aspirin off the table for my entire life. I've never even had Advil (which is probably good since I don't know what I'm missing out on!), and have only used Tylenol if I really need some kind of pain relief (thankfully, very rarely). Aspirin/salicylates/Ibuprofen are definitely blood thinners and to be avoided with ITP unless a doctor has recommended their use for a particular case.

Keep us posted on how spacing out your promacta goes and if it helps with the headaches. Fingers crossed that getting your count down closer to the target of 50 will cause your side effects to disappear as it has for several others

Thanks mom! Here's hoping! I've had very positive reactions to everything, initially. Then eventually I go back to my low counts. This is the first time I've ever had any side effects, so it's a bit discouraging. But we shall see!! I DO miss my Advil tho!

Oops! I forgot about the little tickly cough I had when I was on 75 mg daily. It didn't last very long and when I took a mild steroid nose spray for 3 wks called Flixonase it went. On 75 mg 3x and 50mg 4x a wk I have no side effects.

Update: Was officially approved for the Promacta and my first "30 day" dosage should arrive today, which is good since I'm about out of my contraband bottle! The scrip is for 50 mg, but I am now taking 25, every third day. My number today was 100, after a week at this dosage...and with the exception of a headache the day I take it, most of the side effects seem to have calmed down. Hurray for good numbers!

That's great news! I'm glad you won the battle!

That's a really great response! I'm glad to hear that you only have symptoms when you take it. A count of 100 is plenty high, and you may be able to space out the dosage even more over time (like every 4th day) if your counts stay that high with your every 3rd day regimen. Good job on defeating the insurance company juggernaut!