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Treatment (Bloodwell, Promacta?????)

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14 years 3 months ago #16680 by JMcNally
Treatment (Bloodwell, Promacta?????) was created by JMcNally
Hi everyone!

I have finally gotten off of steroids after 2 1/2 years on them. My only form of treatment is IVIG when needed. As of today I was at 36 (down from 69 last week). Doctor wants me on steroids, I cannot go back.
I have a very clean and green diet! Green juices, everything organic, wheat grass, smoothies,..... I did just get my first order of Bloodwell pills, hoping that works.
Promacta has been discussed, some of the side effects scare me. Tried N-Plate did not like it, it did work. I have had my spleen removed, tried rituxin, imuran. IVIG works great, I wish the treatment weren't so long.
Any thoughts/opinions on either Bloodwell and/or Promacta would be greatly appreciated!

Jessica
  • server
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14 years 3 months ago #16692 by server
Replied by server on topic Re: Treatment (Bloodwell, Promacta?????)
Hi Jessica. I can relate to the NPlate experience. It wasn't worth it at all. I am currently on Promacta. It's working real well. In fact, as with NPlate in my opinion, to well! Promacta is supposed to only keep you around 50. My last count on 26mg a day was 261! Not sure what is going to happen next. I can't see me keep taking it with numbers that high. No side effects...yet. Not expecting any either! Let me know what you decide.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
14 years 3 months ago #16699 by
Replied by on topic Re: Treatment (Bloodwell, Promacta?????)
I've been on Promacta for a year and a half now.
50mg/day (2 pills a day) keeps me in the 40k - 50k range.
Side effects...for me...are far less hassle than steroids or immune suppressants I've done prior.
Everyone is different, your mileage may vary.

.
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14 years 2 months ago #16852 by JMcNally
Replied by JMcNally on topic Re: Treatment (Bloodwell, Promacta?????)
Thank you for the feedback.
I just had two rounds of IVIG and I am getting my third tomorrow.
Refusing steroids, I will not go on them.
What scares me with the Promacta is the "liver damage" warnings.
Is it something you have to check often?
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14 years 2 months ago #16855 by gayk4
Replied by gayk4 on topic Re: Treatment (Bloodwell, Promacta?????)
They are monitoring the liver with my daughter by doing a liver panel blood test weekly. They will pick up quickly if there is irritation to the liver. It will show up in elevgated AST and ALT. So far, so good. Her platelets were at 1,000 on 6/7/11 and went to a high of 326,000 on 6/23/11 (that was with a 4 day pulse of 100 mg prednisone in addition to the start of Promacta). She has been on 25 mg Promacta every other day since 6/17 and last count on 7/5/11 was 169,000. She has had no side effects except a slightly hoarse voice. No pain, just a little hoarseness. Has anyone else had this?

Gay K
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 months ago #16867 by Sandi
Replied by Sandi on topic Re: Treatment (Bloodwell, Promacta?????)
Jessica - I'm not on Promacta or N-Plate, but I am on Methotrexate which can also cause liver damage. When people are on those types of drugs, they do monitor them closely and at the first sign of trouble, they stop the drug. It usually will reverse after that.
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14 years 2 months ago #17267 by poseymint
Replied by poseymint on topic Re: Treatment (Bloodwell, Promacta?????)
I've been on Promacta for 5 months and have been getting my liver checked monthly. I was getting CBCs every week, now every 2-4 weeks because my counts are stable around 50K.

Before taking Promacta, a blood test showed liver inflammation but it was from taking too much TYLENOL of all things! I had been having pain from a back strain. I was surprised since I had been on Prednisone, Rituxin but the serious side effect was from the Tylenol. I wouldn't have ever known except for the fact that I was getting my blood drawn every week. I stopped taking Tylenol and liver went quickly back to normal.
14 years 2 months ago #17269 by
Replied by on topic Re: Treatment (Bloodwell, Promacta?????)
Yes, as has been said, they monitor the liver as they are checking platelet counts.

Hoarseness? Could be caused by the dry-mouth effect of Promacta. At least, it affects me that way.

.
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