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Prophylaxis 7 years 4 months ago #50280

  • delta809
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Update:
Promacta 50mg still keeping platelets at around 50k.
However, my liver enzymes have been elevating in the last few months. Currently ALT enzyme is more than double where it should be. Hema has concerns and suggested that I reconsider Rituxan.

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Prophylaxis 7 years 4 months ago #50282

  • Melinda
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Well shoot - not good about the liver enzymes! Promacta is doing what it is supposed to count-wise. I know nothing about Promacta, can the dose be lowered to see if that would keep count around 50k but bring down the liver enzymes?

Have a friend who had Rituxan a number of years ago and her count is still real good. She did get it however when the procedure was 8 infusions - took a while but her count did go up.

Thank you for keeping us posted - appreciate it!

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Prophylaxis 7 years 4 months ago #50289

  • Sandi
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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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Oh no! That's a shame since Promacta was working perfectly.

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Prophylaxis 7 years 4 months ago #50293

  • delta809
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Thanks Melinda and Sandi.

I did try 25mg for a few days and counts went down to 20k.

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Prophylaxis 7 years 4 months ago #50329

  • Melinda
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Darn - sorry the 25mg didn't do the trick with your count.

What are you plans now - will you discontinue Promacta? I would think the liver numbers would come down, right? Will you go with Rituxan?

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Prophylaxis 7 years 4 months ago #50357

  • delta809
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I'm continuing Promacta for now and monitoring hoping the liver enzymes go down.

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Prophylaxis 7 years 4 months ago #50359

  • Melinda
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When will your next liver blood work be done? Keep us posted ok?!

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Prophylaxis 7 years 2 months ago #51160

  • delta809
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I'm staying on 50mg promacta daily.

I started taking 600mg n-acetyl cysteine twice daily about 5 weeks ago and liver enzymes have been decreasing. Hema says although they are still above normal, I am not in the really high levels to be concerned.

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Prophylaxis 7 years 2 months ago #51169

  • Sandi
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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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That's great...how are your counts?

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Prophylaxis 7 years 2 months ago #51171

  • Melinda
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Hi - how is Hong Kong?

Glad to hear the liver enzymes are coming down - I'll have to look up the n-acetyl cysteine to see what it is, but it sounds like it is helping.

Yes - what was your last count?

Thank you for keeping us up to date!

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Prophylaxis 7 years 2 months ago #51182

  • delta809
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Counts are still consistently in the 50k range

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Prophylaxis 7 years 2 months ago #51185

  • Sandi
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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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That's great! :cheer:
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Prophylaxis 7 years 2 months ago #51186

  • Melinda
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Yes that is great - happy for you!

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Prophylaxis 6 years 8 months ago #53788

  • delta809
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Still on 50mg of Promacta. Counts have been over 50k recently.

4 months ago, since December I have been avoiding gluten, dairy, and sugar. Also avoided grains for 3 weeks initially in December. I read the book The Autoimmune Solution by Myers and was intrigued.

Still taking N-acetylcysteine along with probiotics.

January count was at 150k
February count was at 90k while being sick, travelling
March count was at 98k

Hoping to be able to reduce the dose of Promacta if this keeps up.

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Prophylaxis 6 years 8 months ago #53791

  • EmilyK
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Sounds like you are doing great! Thanks for checking in.

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Prophylaxis 6 years 5 months ago #54807

  • delta809
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Promacta dose lowered to 25mg and count at 51k.

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Prophylaxis 6 years 5 months ago #54808

  • Sandi
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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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Perfect! :)

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Prophylaxis 5 years 4 months ago #59913

  • delta809
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Hi All -
Checking in. It's been a while. Wanted to let everyone here know that I'm ok.
Still on 25mg and counts stay around 50k.

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Prophylaxis 5 years 4 months ago #59915

  • Sandi
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That's great! Thanks for letting us know.

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Prophylaxis 5 years 4 months ago #59919

  • Hal9000
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delta809, you're the second person I've found that has reported basically a doubling in counts when cutting gluten out of their diet. The other was ' Forevertwentyone '. When I cut out gluten I simultaneously began Rituxan treatments, so the reason for my counts doubling from 12 to 24 is harder to establish. Could have been a partial Rituxan remission or cutting gluten out.

Both Forevertwentyone and I are sensitive to Promacta and we both respond poorly to steroids. But you are different. You do respond to steroids but also need slightly more Promacta - 25mg instead of 12.5mg. So, must be similar but different underlying mechanisms.

Question for you. You mentioned taking Cellcept (March 2015). How long did you take it then? As you may know it can take awhile for it to kick in. Did you notice a change in counts after starting or stopping it?

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Prophylaxis 5 years 4 months ago #59933

  • delta809
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Hi Hal,
I was on cellcept for a few months while still on corticosteroids and while transitioning to Promacta. Honestly, it didn't seem to make my counts substantially better and it made me feel sick. Promacta took a while before it started to work. I recall it was at least 6 weeks and I was on 50mg.

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Prophylaxis 5 years 4 months ago #59934

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Hal, Does Promacta make you feel sick? You mentioned you're sensitive to it.

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Prophylaxis 5 years 4 months ago #59938

  • Hal9000
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Ok, just checking Cellcept response. Didn't expect it did much. It appears Azathioprine / Imuran works better than Cellcept or Cyclosporin for steroid responders.

When I first started Promacta I felt for a few days like I was coming down with the flu. But the feeling wasn't strong. Don't seem to get that feeling anymore. Either got used to it or it has actually went away. Headaches though are being more problematic. Hoping they will go away, soon.

Very nice that you only need 25 mg. Is that dose level giving you nausea or ?

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Prophylaxis 5 years 4 months ago #59950

  • delta809
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Very sorry to hear that. Hope it does go away for you.

I have not experienced any nausea thus far. Times I felt sick since I've been on it where when I was actually coming down with a cold.

The biggest side effect I'm worried about is liver damage. Hoping I can lower the dose again.

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Prophylaxis 5 years 4 months ago #59951

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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I am currently on 50mg of Promacta, for the last 20 days. Count yesterday was up to 174. I have noticed a lot of joint and muscle soreness when I sit. As long as I am up moving around I don't notice it. Watching TV at night and laying down to sleep are the worse.

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Prophylaxis 5 years 4 months ago #59952

  • Hal9000
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Ack delta809. I didn't see until now that your ALT enzyme is twice normal. Ouch. Surprised your Doc hasn't moved you to NPlate. Something holding you back? How is your IVIG response, two weeks or no response?

D.Mann, oh my. That's a strong count now. Have to wonder what was going on before. Hope the trend continues. I too have noticed occasional muscle soreness after being sedentary for a while. Odd. I'm not sure when it started for me. Not paying close attention. Is it possible it started with the Rituxan treatments?

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Prophylaxis 5 years 4 months ago #59953

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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Hal my count has really climbed since I have gone to 50mg. I guess this is the point where I would start juggling the 25 and 50 daily to get the count a bit lower but above 50K. Instead I have elected to go the surgery route in an attempt to be off all meds. I guess it is nice knowing that if surgery fails I can use Promacta, but long term cost is very scary to me. Monday night will be my last dose of Promacta (hopefully forever). I will keep you updated.

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Prophylaxis 5 years 4 months ago #59954

  • Hal9000
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Well D.Mann, you've been talking about a splenectomy for awhile. I wish you the best of luck. Certainly the odds are very good. Splenectomies are a mystery to me. Why they work for some and don't work on others with the same ITP type, and why some work for awhile, all a mystery to me. Physiology maybe? I guess I'm a little surprised you didn't try Danazol and/or Cellcept as a low cost alternative beforehand.

The good part is the Promacta has got your counts way up so you can have laparoscopic surgery. From what I've read, recovery is much faster and less painful that way. Do they want you to be off of it for a few days before the surgery? Or, are they going to use IVIG as a bridge?
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Prophylaxis 5 years 4 months ago #59955

  • Sandi
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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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Splenectomy fails at times because the liver can be the site of destruction, or ends up taking over destruction once the spleen is gone. This is where the Indium Scan can come in handy. Although it will not predict success, it can predict failure and save a spleen. One woman here had it done in the UK and it showed a high percentage of destruction in the liver. She chose not to have the surgery based on that.

Good luck, DMann!
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Prophylaxis 5 years 4 months ago #59956

  • D.Mann
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I'm going to keep up Promacta till the day of surgery. Monday night is the last pill and Tuesday is surgery.

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