Promacta and side effects

Anyone experiencing continuing fatigue while on Promacta? I've been on it less than a month and can't seem to get past the fatigue. At least my counts are way up, on Monday they were 335,000.

I've been on and off Promacta for a year. The side effects for me are worse in the beginning. I have a headache, fatigue, loss of appetite in the first week, but it gets better. Thats been my experience.

Have you thought of reducing your dosage? 335K is a high number for Promacta. Is your doctor concerned about the high count? In the Glaxo literature it says Promacta is designed to give counts greater than 50K but not normal. there are risks associated with high counts.

I'm on week 3 now of being on it and don't go back to the hematologist for 3 weeks. I'm sure she and I will discuss this at that point in time. When I started Promacta I was still on Nplate for a week (smaller dose than what I had been getting due to getting on Promacta). My count went from 165,000 at that time to the 335,000 it is now. For some reason each time my body responds to treatments my counts shoot way up, at least 30,000 each time.

Maybe it was the combination of the 2 drugs that made your counts go way up? And like you said, the initial response. If thats so it will probably drift back down. And high counts may not be a problem for you. Doesn't sound like your doctor is concerned.

I personally worry about high counts with Promacta because I've had symptoms of clogged arteries with high counts. But I've noticed that my doctors and other doctors don't share my concerns. So for me, I like counts around 50K (30k-65K) since I've had symptoms when counts go over 100K. We all have our comfort zones!

I think that my hematologist and all the nurses in the office are amazed at what my counts have done especially since when I was initially diagnosed my counts were at zero in the hospital and then after the IVIG treatment wore off they were back down to 2,000.

Thats great that you had a response! Nice to find something that works.

Just curious, why did you switch from NPlate to Promacta? How are they different for you? Did you have fatigue with NPlate? I haven't tried NPlate, I would have to pay out of pocket for weekly doctor visits.

The Promacta pills are easy and free for me, plus seems to be working well with minimal side effects. I'm taking a low dosage prednisone too, would like to get off that-ugh but its likely countering the fatigue.

Going from Nplate to Promacta was on advice/suggestion of my hematologist, somewhat out of convenience factor so I don't have to go to her office each week to get Nplate.

The side effects are pretty much the same for me between both Nplate and Promacta. I did have fatigue with Nplate like I've had with Promacta.

I didn't have up front costs with the visits for Nplate (will find out what my insurace covers afterwards as I've not gotten a bill for the Nplate visits yet). I wish I could get Promacta for free. It was going to be $240 a month after insurance but have been able to get copay assistance from GSK Cares (the drug manufacturer) so now I will only be paying $25 a month for the Promacta.

I haven't been on prednisone since January I think and then it was only in the hospital and for one weekend a couple weeks after being in the hospital when I was diagnosed in January.

Wish I could get Promacta for free also...or even for $25. Good for y'all.
I pay out the wazoo for health insurance, the rates went up again in January. To add insult to injury, they also increased my Promacta co-pay 33% this year (to $80 a month)....33%!!
Yet, during that same time period, the starting price for Promacta has decreased! Go figure?
Our insurance and health care industries in the USA are 'interesting', to say the least.

Original question: Promacta and fatigue?
I'm just shy of 2.5 years on Promacta now, I still feel fatigue. But overall I have far fewer side-effects from Promacta than anything else I've used over the years.
I have my own pet theory about fatigue, which coincides with the weight lose I've experienced on it also. Promacta stimulates platelet production, those new platelets aren't made in a hollow tree by little elves....the energy comes from somewhere. Platelets get produced, then they get destroyed, then produced, then destroyed.....endlessly and at a higher than normal rate.
Quite frankly; it's exhausting!

But I am not a doctor, nor do I play one on TV or the internet.

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Weirdjack, you took the available information and drew a logical conclusion. That right there shows you are not a doctor. Just kidding. I have seen some good doctors that are capable of doing exactly what you did, a month after you call to schedule an appointment, and 45 minutes after the scheduled appointment time.

Hi:

If you read a lot of the discussions on ITP, the most discussed issue for everyone, no matter what their platelet counts are, is fatigue. The fatigue probably does not have anything to do with Promacta, but rather the quality and quantity of the platelets. The Promacta hopefully is keeping you platelet counts at a safe level. But the platelets being produced may not be of the same quality.

I am on N-plate. I a feel fatigued nearly all the time. Even though my bone marrow is producing extra platelets. The disease is still raging in my system. There is no time out.

clem

Hi:

If you read a lot of the discussions on ITP, the most discussed issue for everyone, no matter what their platelet counts are, is fatigue. The fatigue probably does not have anything to do with Promacta, but rather the quality and quantity of the platelets. The Promacta hopefully is keeping you platelet counts at a safe level. But the platelets being produced may not be of the same quality.

I am on N-plate. I a feel fatigued nearly all the time. Even though my bone marrow is producing extra platelets. The disease is still raging in my system. There is no time out.

Clem

I've not heard of Promacta and Nplate affecting the quality of the platelets but for me, the fact that the drugs aren't designed to give a normal platelet count is their major problem. It means that even at safe levels with Nplate I still feel fatigued. We really need a treatment that gives us normal levels safely. Maybe in the future.