Promacta

I have been on promacta for almost a year now, in the beginning I had slight nausea with the occasional vomiting but over time it decreased. Now almost a year later I have noticed more symptoms, more nausea and vomiting almost weekly. Is it normal to start having more symptoms and problems the longer youre on promacta? Has anyone else had this problem?

Bethany I'd talk to my doctor if I were you.

Good luck!

Hello,
Sorry to hear that. My 3 year old has ITP. And they are trying to put her on this Promacta. My husband and I are totally against it! Since she has been on IVIG and steroids now recently tried WINRHO. Nothing has worked long period. I believe all the side effects from Promacta which is what your taking may have a long term effect not sure BUT that's just our belief and why we don't want to try it.

I have been on Promacta for most of the last 4 years without a single negative side effect. At present I am on max dose of 75g with no ill effects. It is less effective now that I am 69 and keeps my platelets stable but low at 20-30 but it has boosted my previously very low haemoglobin and white cells to normal and rescued me from apparently heading for aplastic anaemia. Without it I would probably be dead by now.

I think Margaret with a child we need to look at things differently.

Ava's mom - I have no idea what to tell you and no idea what I'd do in your situation. You know your child best - you and your husband will do what you feel is right for her.

Is Ava seeing a pediatric hematologist?

I'm so sorry to hear abouthat that! Itp is hard, but it's even harder when its a small child. Ive told my doctor from the start that I didn't want promacta, but I wasnt given a choice. I hope things work out and they find a treatment that works!

Yes she is! We are here in Michigan. Great staff at Beaumont Hematology, actually introduce me to this site.

Bethany what do you mean you weren't given a choice? Did nothing else work for you and you had to go to promacta? I'd think we always have a choice.

Ava's mom - sounds like she is in good hands! Keep us posted ok?!

I moved and had to get a new hematologist who started me on prednisone when my count had initially dropped for the first time after my splenectomy and when that didn't work he put me on promacta and tells me no every time I ask to be taken of or say I no longer want to take it. Needless to say I'm switching to a new doctor with hopes for a better treatment plan.

Bethany, I hope you find a new doctor soon. Many hematologists are good but don't know much about ITP, because it is so rare. I see that you are listed as a teenager. Depending on your age, you might be seeing either a pediatric or adult hematologist. The pediatric ones tend to treat less aggressively. Either way, if you need help finding someone new, let us know your general area, and maybe someone here can recommend someone.

Hi! My 4 year old was just released today from the hospital after his third round of ivig. The doctor told me next time he wants to use the promacta and I know nothing about it. May I ask what about it makes you uncomfortable? I want to know all sides to make a good decision. Thanks!

Hi melissarogers- Sorry to hear your child is having trouble- that must be hard. Parents in the child section could probably answer your question better. That said, I have been on Promacta 4 different times since 2010. Usually I last about 6-10months before I can't take the side effects. I personally would never give it to a child but thats my opinion from my experience. You want to look at the symptoms your child is having- is there bleeding? is your child in danger that would warrant a strong drug? On the Mayo Clinic website it used to say about ITP "caution the treatments can be worse than the disorder." Good you are doing your research! Read everything.

My side effects have been headache, nausea, low appetite. I have had brain issues- memory lapses, foggy thinking, a sense of detachment, lack of curiosity and imagination- that was very uncomfortable. I believe it may have been a symptom of low dopamine. I had skin exfoliation- skin peeled from my legs as if after a sunburn. And very pale skin on legs- odd side effect but something I have since read about. All of these side effects went away within 48 hours of quitting Promacta so I know for certain they were from the drug. Many people have no side effects at all. Promacta can affect the liver, so must get the liver checked regularly.

I personally prefer the drug, Nplate. Its a weekly injection with a tiny needle. I don't have any problems with it. On Nplate my mind is clear sharp and overall I feel good. Other people have different experiences. ITP often goes away in children after a few months. Hope that happens soon. good luck!

Hi , How are you doing. Did you end up using Promacta?