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Promacta - side effects

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 11 months ago #61549 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

Good to hear CindyAnn.
Calculator says revised landing count is 140 instead of the earlier 130. After this bump in the road, hopefully the Promacta dose can continue to be lowered over time.

ITP Types and Treatments by HAL

momto3boys
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7 years 11 months ago #61574 by momto3boys

Replied by momto3boys on topic Promacta - side effects

CindyAnn wrote: 11/01/17 draw - count is........ 165k (12.5mg Promacta 11 days)
Headache is still there - I think it is messing with my sinus's taking Zyrtec seams to help more than Aleve or Tylenol.
I have also noticed that my fingernails are growing faster and much stronger than prior to Promacta.

Surgery was a success and it is so nice to be able to walk and move with much less pain!

That is great news about the surgery! Hooray for walking and movement :lol:

Hopefully as you recover, they can decrease your dosage even more to let your count head closer to 50 and that should help with the headaches. Keep us posted as you recover!

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 10 months ago #61671 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

CBC / LFT draw Nov 8, 2017 ...... platelet count ..... 87K. Still at 12.5mg Promacta daily
I had a Lumbar Epidural on Oct 30th the injection was 1cc of 1% lidocaine and 1.5cc of dexamethasone (10mg/mL)
I am thinking this might be why the significant drop in platelets (still well within the goal range )

Side effects - annoying headache still, sneezing has decreased but when I do sneeze it is about 15 -20 at a time, bowel movements have become normal YEAH!!! Fingernails are looking great for the first time in my life :laugh:

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 10 months ago #61672 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

I'm no sure which is more disappointing, 87k or the headaches - still a fantastic count though. One can hope both will resolve to the better with a little time.

ITP Types and Treatments by HAL

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

7 years 10 months ago #61680 by Sandi

Replied by Sandi on topic Promacta - side effects

CindyAnn - counts are perfect! See what happens next.

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 10 months ago #61775 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

CBC / LFT draw Nov 15, 2017 ...... platelet count ..... 70K. Still at 12.5mg Promacta daily

Continued side effects - annoying headache still, sneezing has decreased but when I do sneeze it is about 15 -20 at a time.
Count is close to what I prefer - I do well at 30k with no bleeding symptoms.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 10 months ago #61784 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

Nothing one can do but give it more time?

ITP Types and Treatments by HAL

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 10 months ago - 7 years 10 months ago #61930 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

CBC / LFT draw Nov 29, 2017 ...... platelet count ..... 51K. Still at 12.5mg Promacta daily

Continued side effects - annoying headache still, sneezing - when I do sneeze it is about 15 -20 at a time.
Count is spot on - looks like I will be staying at 12.5mg Promacta for now.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 9 months ago #62123 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

CindyAnn, you were dropping kind of quickly to a 50 count. Are things still going well?

ITP Types and Treatments by HAL

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 8 months ago #62201 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

Took a real vacation to Jamaica with my daughter so took a break from counts until Jan 3rd - count was 79k on 12.5mg Promacta.
I have a appointment with Hemo Jan 18th to discuss treatment and side effects - I hope to go to 12.5mg every other day and maybe see if I can hold my own again without treatment. I am very comfortable with counts between 20k and 50k, my symptoms are minor and I feel the Promacta headache is just not worth it right now.

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 8 months ago #62302 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

CBC / LFT draw Jan 17, 2018...... platelet count ..... 115K. Still at 12.5mg Promacta daily

Continued side effects - annoying headache still, Hemo said to try Tylenol - took this morning, still have headache

Looks like I will be staying at 12.5mg Promacta for now - But Hemo said if I have a few more counts over 100K we will go to every other day and see if I can eventually stop taking the Promacta

For now counts every three weeks and a liver function test once a month.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 8 months ago #62305 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

Ah, the fantastic response has returned. I wonder why it went away for awhile.

You mentioned diarrhea and IBS as a side effects earlier. Now that I'm Danazol and Promacta I've been skipping Promacta occasionally. I have to now agree. Was getting a little bit of both of those symptoms too. At the time I just attributed it to needing more fiber. When you mentioned it, started paying more attention. I now see that skipping Promacta makes a difference.

ITP Types and Treatments by HAL

Moe1327
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7 years 8 months ago #62336 by Moe1327

Replied by Moe1327 on topic Promacta - side effects

I really haven't had any side affects, but I've been taking promacta 50 mg for about 2 months and my numbers have declined. I'm getting an iron infusion tomorrow to help with anemia. The tiredness is my biggest complaint...find it hard to get out of bed. I've been needing surgery to have fibroids removed and have put it off because numbers haven't been high enough. Finally told doctors I couldn't take it any more, so they started the promacta and will start a steroid 2 weeks prior to surgery. How many different medications are tried? I had IVIG treatments in beginning which would make me feel great for about 2 weeks, but insurance won't cover those anymore. I have also changed my oncologist which I love because she takes her time with me.

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 8 months ago #62337 by D.Mann

Replied by D.Mann on topic Promacta - side effects

If your anemia is due to bleeding from low counts your red blood cells are probably low also. This will cause you to be tired and out of breath quickly. I am curious about the IVIG and insurance. Are they refusing to pay for rescue IVIG or were you doing regular infusions to control counts? If you look over the different threads several people lately have had good results combining a steroid and promacta. If promacta is not working for you Nplate may be a good option to get your counts up enough for surgery.

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 7 months ago #62452 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

CBC / LFT draw Feb 6, 2018...... platelet count ..... 70K. Still at 12.5mg Promacta daily (not complaining about the count - it is right where it should be, just wish I did not have to take anything and could go back to watch and see mode)

Continued side effects - annoying headache still, Hemo said to try Tylenol - took several times over the last three weeks

no help
I will be staying at 12.5mg Promacta for now - I will have to wait to reduce/stop because my Hemo said I have to have a few more counts over 100K then we will go to every other day and see if I can eventually stop taking the Promacta

poseymint
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7 years 7 months ago #62456 by poseymint

Replied by poseymint on topic Promacta - side effects

Cindy Ann~ Do you drink coffee? I sometimes get an Nplate headache. It happens just one day a week usually about 4 days after my injection. Its a pain across my forehead that I wake up with in the morning. I immediately drink some coffee (soy latte) and that takes care of it. Promacta headache is probably different but just wanted to throw that in as something to try. Hope you can reduce your dose to nothing soon!

CindyAnn
Topic Author
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 7 months ago #62490 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

Poseymint, thank you for that tidbit - I do drink coffee about 2 cups of black coffee a day.
This headache does not go away and is behind my sinuses (not a sinus headache, I have lot's of allergies and know what that feels like, this is just behind that spot). But with your comment I will have to think if there is something that I eat/drink that might be reacting with the Promacta - hummmm?

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 7 months ago - 7 years 7 months ago #62535 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

CindyAnn, I was thinking about count response fluctuations and IBS. Have you ever tried going gluten free for a couple of weeks to see if it affects counts?

ITP Types and Treatments by HAL

CindyAnn
Topic Author
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 7 months ago #62552 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

I don't eat much gluten to start with because of food allergies but fully abstaining is worth a try - Thank you for the suggestion

mrsb04
Away
ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

7 years 7 months ago #62556 by mrsb04

Replied by mrsb04 on topic Promacta - side effects

I tried gluten free, absolutely no effect on platelet count at all, but definitely reduced bloating and indigestion.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 7 months ago - 7 years 7 months ago #62560 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

Cindy, I hope you do get a chance to try it and that it helps.

I think I have a theory, but it needs testing. I don't seem to be taking enough Promacta to investigate further. Right now, it seems I no longer have any IBS.
My theory is that Promacta increases IBS sensitivity for those with Celiac. That it is the consumption of gluten which triggers IBS events. That if a Celiac: doesn't consume gluten, or, stops taking Promacta, in either case IBS goes away.

Hope this helps.

ITP Types and Treatments by HAL

CindyAnn
Topic Author
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 4 months ago #63494 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

Well, its been a while - new job keeps me pretty busy

I have had counts done about every three weeks and slowly crept up to 112K platelets by April 23rd at 12.5mg Promacta daily. So I asked to go to every other day and maybe stop. I took 12.5mg M-W-F (took weekends off) starting April 25th and count on May 15th was 78K. So Hemo said I can stop taking Promacta and test weekly for a couple weeks

During they M-W-F dosing my intestines did not know what to do

:sick:

today is day 4 with out Promacta and I think my intestines are settling down, I hope. The headache is almost all gone, I think that is the best part!
I will check in again after a couple of CBC's and let you all know how it is going.

Fingers Crossed

mrsb04
Away
ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

7 years 4 months ago #63498 by mrsb04

Replied by mrsb04 on topic Promacta - side effects

Good news Cindy

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 4 months ago #63501 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

Half of 112 is 56. 78 is a good deal more than 56. Sounds like you've got a floor in there somewhere.

I hear there is a 'get out of ITP jail' card in some bottles of Promacta. If you got one, we can keep a secret.

ITP Types and Treatments by HAL

CindyAnn
Topic Author
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 3 months ago #63835 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

Just a update:
May15 - platelets 78K
May 17 - Stopped Promacta completely

May 24 - platelets 46K
May 31 - platelets 21K
June 13 - platelets - clumped no count available
June 18 - platelets - 39K
I held my breath hoping my Hemo would let me ride the low count out, and she did. It looks like I might be back to my normal between 30K and 50K on my own - I am crossing my fingers. For now monthly counts until otherwise directed or symptoms appear.
Side effects - All gone - No headache!!, I have not slept this well in ages.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 3 months ago #63836 by Hal9000

Replied by Hal9000 on topic Promacta - side effects

Great to hear Cindy.
Do you suppose one Promacta pill per week would help?

ITP Types and Treatments by HAL

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

7 years 3 months ago #63838 by Sandi

Replied by Sandi on topic Promacta - side effects

Good news, Cindy!

mrsb04
Away
ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

7 years 3 months ago #63840 by mrsb04

Replied by mrsb04 on topic Promacta - side effects

Looking good Cindy

CindyAnn
Topic Author
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 2 months ago #63931 by CindyAnn

Replied by CindyAnn on topic Promacta - side effects

I am going to ride it out without for a couple months to see if I can stay between 30K and 50K, if I don't have to take anything I will be VERY happy!!!!

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