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TOPIC: How do I keep platelets up until promacta kicks in? Just Started promacta

How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60126

  • Cindy1
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Hi
Just started Promacta 50 mg five days ago. Platelets were at 24,000 yesterday. They dropped down from 100,000 the day before . So the dr gave me 5 mg/kg nplate I agreed because I am Wanting to keep platelets at a safe level not back down to 2,000 which they were at 2 weeks ago before I got an 8mg/kg nplate shot and dex 20 mg for 4 days. (And even then it was a weak response topping out at 178000.)

It seems reasonable to get IV I G infusion if platelets are under 10,000 tomorrow and/or Saturday, right? This way I will have a protective bubble while the nplate and Promacta kick in.

History: I bottom out every two weeks except for the one time that I had triple antibiotic therapy and the treatment lasted for seven weeks.

I think you need to have some kind of additional treatment while the Promacta is kicking in. Otherwise you're living with platelets at 2000 which is not a good story. I know we don't want me to get a blood clot but I feel the need to stay above 9,000
Thank you in advance for your thoughts .

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60127

  • Sandi
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Cindy:
I have already given you my thoughts. At this point, you should do what you are comfortable with because I don't think you are comfortable with what we say. I truly hope your counts are above 10k tomorrow and you won't even have to think about IVIG.

The entire month that I had Rituxan infusions, my counts ranged between 3k and 11k. My doctor didn't pressure me to do anything else and I was fine with that. On the day of my fourth infusion, counts went to 150k. It all worked out.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60128

  • Hal9000
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Cindy, to me it makes sense to use Nplate as a bridge or IVIG as a bridge, but not both.
The '5' Nplate dose is unfortunately high - I have been hoping they were giving you a '1'. That wasn't the case. Promacta response not looking good either.

From what I've seen, there are a number of folks that fail to respond to Promacta and end up on higher doses of Nplate. Count wise it can look like Promacta isn't as powerful as Nplate. So it is possible Promacta can give you a floor higher than 2 but not high enough to work with - less than 50.

Still, giving Promacta a full 2 months to kick in may be time well spent, even at 75 mg dose.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60130

  • Sandi
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Yeah, it's still soon to worry about Promacta not working. It hasn't even been a week.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60131

  • Cindy1
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Hi Sandi,
I want you to know that I do appreciate all of the advice and information you share with me on this site. It is the only way I am getting through this maze. I want my counts to be over 10,000 too. I can even handle 7,000 but back down to 2,000 would be bad news with blood blisters in my mouth. I am hoping the counts will be OK and no IVIG, Fingers Crossed.
Thanks for sharing.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60132

  • Cindy1
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Hal,
Thanks for those thoughts. The dr. wanted to give me 10mg/kg and I asked him to please do 5mg/kg due to clotting worries that this site has made me so aware of. And thanks for the "bridge term" and hopefully I will be at a safe platelet level in the morning from my Nplate bridge and IVIG will be a distant memory. I will hold onto hopes the Promacta will kick in within 2 months. I need to check the dose info to see when they bump it uo to 75.
Thanks!

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60133

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If the doctor thinks nplate will work faster for you, why try Promacta at all? The goal is to find something that keeps you in a safe range. You will not know if the promacta, nplate or IVIG worked if you do all three at the same time. I totally get how hard and scary it can be. I just wished I had listened faster and avoided stuff that did not work. My viens are so scarred from all the testing it is almost impossible to get blood out and it is incredibly painful. Did I need a daily blood test? Absolutely not. Did I need rituxan, nplate and IVIG almost simultaneously? Absolutely not. It took a trip to england and a visit to Dr Provan to get more on track, off prednisone, stop the daily testing and try Promacta. I should have stopped the insanity and heard what Sandi and everyone else tried to tell me.
Good luck. It is a tough journey if your doctor doen not even trust himself to make reasonable recommendations. I had that kind of doctor and found a new one.
Diagnosed Jan 2015 at age 50 with 13,000.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60134

  • mrsb04
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Cindy
I'd stick with just Promacta. It can take up to 3 weeks to work.You can increase to 75mg a day.
As Emily says the more drugs one take the less chance of knowing which is working.
TPO meds boost platelet production. New platelets are bigger and stickier than mature ones hence the target count of 50k to keep people safe from clots.
If I had a count of 178k I'd be terrified.
Personally I think it far too dangerous to try both TPO meds together or either with IVg as the risk of clotting would increase alarmingly, rather a few blood blisters than a stroke, heart attack or pulmonary embolism.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60148

  • Cindy1
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Hi mrsb04 and all,
I think you will all think I made a good decision with the help of your feedback and my drs. feedback. My platelets went from 24,000 thurs to 6,000 today and I did not take IVIG. The plan is if I am under 4,000 tomorrow I take one day of IVIG otherwise nothing. I am still on 50mg Promcata and I am drinking a ton of Pomegrantin juice and eating chicken and eggs and kale and carrots and probiotics and a multivitamin and crossing my fingers!
Being new to ITP is all so confusing but clearer with your feedback.
Thanks and Happy Friday.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60149

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Emily,
Your words definitely spoke to me. I am a lot like the things you said...too many blood draws but not wanting to crash. And very scared for my safety and no bleeds or clots. And I agree I want to know what works and what doesn't.
Thanks for writing to me, it helped me a lot. I am pasting my group comment for you in case you don't get it.

I think you will all think I made a good decision with the help of your feedback and my drs. feedback. My platelets went from 24,000 thurs to 6,000 today and I did not take IVIG. The plan is if I am under 4,000 tomorrow I take one day of IVIG otherwise nothing. I am still on 50mg Promacata and I am drinking a ton of Pomegrantin juice and eating chicken and eggs and kale and carrots and probiotics and a multivitamin and crossing my fingers!
Being new to ITP is all so confusing but clearer with your feedback.

Cindy

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60150

  • Sandi
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Cindy:
I'm glad that you didn't do IVIG today; one of the TPO's will surely kick in any time now. Emily is right though, the daily counts can be excessive. I went once a week when I was under 20k, no matter what they were. Yes, I began treatment but waited for it to work and didn't get slammed with too many treatments at once. Symptoms matter more than counts and counts are not quite exact.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60151

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Cindi
I am glad what I said was helpful. It is all scary and new and overwhelming. Keep us posted and try to stay as calm as possible through the down turns.
Many hugs to you!
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60153

  • Hal9000
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That took guts.

Ok Promacta, you've got a reputation to uphold around here. Time to show your stuff.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60172

  • Cindy1
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Sadly, my update is that I did drop to 4,000 today from 6,000 yesterday and I did have the IVIG because I am scared to let the platelets go down to 2,000 again. I tried putting the IVIG off as long as I could handle the low numbers. But 2,000 feels unsafe for my body and mental health. I know that we were all rooting for the non IVIG approach, including me.

The doc said if I don't want the second day of IVIG I don't need to take it. My plan is to not take it unless there is a continued downward platelet trend. Please let me know if I am missing the mark on the plan to not take IVIG tomorrow. I got 1,000 mg/kg today. Also, anything I should do or not do after getting the IVIG.

I have never had it take this long for NPlate which I got on Wednesday to respond. Not to mention the Promacta 50mg a day not working yet. Maybe it is that here is a very strong something: alien autoimmune or infection that is just devouring my platelets and I the IVIG will protect them and then we can see if there is a platelet bump from the TPO meds.

Thanks to my great Platelet BFFs for your support and help with this maze of decisions!
Cindy

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60173

  • Cindy1
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I needed a laugh thanks! I wish the Promacta was listening!

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60174

  • Cindy1
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You said that beautifully: scary, new and overwhelming. Hugs back to you! Cindy

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60176

  • Hal9000
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Cindy, do you think it would be good to switch over to IVIG at this point as the bridge to Promacta?
As can be seen, Nplate takes several days to raise counts. Then when it wears off, counts fall quickly. It carries a high clot risk because of the over stimulation of bone. IVIG has less issues. Counts rise 20 - 30 per day. It wears off gradually. Platelets have a more normal life cycle and thus size.

I dunno. Since you just had an Nplate 5 shot, even 1G/kg of IVIG seems like a lot. Your guess is probably better than mine as to how high counts will go and how many days it will last. Maybe half the earlier 1,200 level because of half the IVIG?

Hoping for the best. That when the Nplate/IVIG wears off Promacta will have had enough time to give you a much better floor. If not perhaps the doc can bump the dose up to 75 mg, and try this cycle again.

Question for you. What dose of Nplate do you suppose would work so that counts would be up 10 or 11 days and thus you could get a shot every week and have no counts crashing?

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60178

  • Cindy1
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Hi Ha9000 and all,
Hal, you raise fabulous suggestions. I go to Mayo in 2 weeks and I am hoping that I can make it there without crashing. IVIG 2 days last time lasted 2 weeks but I got one day of it this time because my platelets today (one day post IVIG) went from 4,000 to 57,000. I think that I needed the magic bubbles. Maybe even just an antibiotic would work in the future? I think you are right hopefully the IVIG can bridge me to Mayo and Promacta working. And I did not know that the IVIG is safer than the Nplate, thanks for sharing that too. OK No blood draws for a while! Yay! Also, has anyone noticed that the pulse ox is higher when the platelets are up?
Be Well,
Cindy

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60180

  • Sandi
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As MrsB said, both N-Plate and Promacta induce platelet production. Platelets are 'born' large and sticky and last 7 to 10 days normally, although will probably die off sooner in a person with ITP. New (reticulated) platelets are larger and stickier than old platelets. This is one reason there is a clotting risk with either N-Plate or Promacta, because you have platelets that work very well even if they are low in number. That is why counts should stay around 50k when using either of those drugs; because a clotting risk exists due to new platelets. The two drugs should not be used together, hence the reason there are no studies.

Even using one TPO alone creates a clotting risk if counts are too high or if counts rise too quickly. DMann just experienced a clot using IVIG which shot his count into the 300's. He wasn't even using a TPO and is on blood thinners soon after having a splenectomy. Hopefully, it's temporary. ANY treatment that causes counts to rise too fast can induce a clot. Using IVIG with a TPO can obviously get a person out of the danger zone, but there is a risk doing that. There are better ways to manage low counts while waiting for a TPO to kick in.

I sure hope you get better advice at Mayo. I wish you could see Dr. Provan in the UK. I'd love to know what he would say.
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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60182

  • mrsb04
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I can imagine Sandi but he's now retired.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60183

  • Sandi
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I know, MrsB. He was truly the top ITP expert as far as I'm concerned. I hope others follow in his footsteps. There used to be a Forum that he would visit and he responded to questions. It was years ago and I don't even remember what it was. I've never met him but I did speak to him a few times on the Forum.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 10 months ago #60184

  • mrsb04
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I was absolutely gutted when he pulled out of the UK conference this year he was the main reason I was going. He was replaced by a Dr Nichola Cooper who made a lot of sense as did Dr Marie Scully. Both advocates of empowered patients.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60218

  • Sandi
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Hey Cindy - how's it going?

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60231

  • Cindy1
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Hi Sandi,
Thanks for asking!
The 1,000 mg/kg of IVIG that I got on 8/12 kicked in. :) My platelets were 144,000 on Friday, 8/18. The plan is to check them this Tuesday and again on Friday and give on day of IVIG if platelets are below 10,000. That way we are proactive in keeping me stable for my flight for Mayo on Sunday 8/27. By the way, thanks to everyone for encouraging me to give my veins a rest! And to not take another Nplate shot!

I am currently on 50mg of Promacta, waiting to see if it kicks in before going to 75mg. Because truthfully my body is eating them up as fast as I can make them unless I get IVIG.

That being said unless Mayo has a better idea, I am thinking now that I am at the 5 month mark it makes sense to try the Rituxin to reboot my system. What do you think of that idea? It is either that or IVIG it seems.

I hope DMann is doing well.

Thanks,
Cindy
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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60232

  • momto3boys
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Wow, that's a great count Cindy. Plenty high to see if you can get an upward trend from your Promacta. I am one of the patients who had to increase my dose to 75mg to get my initial response, so there is definitely hope for it to work for you even if it hasn't quite started yet. How long have you been on it? Hasn't it only been around 2 weeks or so? Definitely in the early days, so plenty of time to wait and see if that will alter your trend.

Regarding Rituxan, I would say no way! You are in the middle of evaluating your Promacta response, it sounds like madness to me to throw another variable into the mix. There is no concept of "being at the 5 month mark" meaning that you need some kind of a system reboot. I'm at the 32 year mark and I've still managed to avoid lots of treatments! It's all about avoiding unnecessary medication wherever possible, because all of these drugs have significant side effects. Rituxan is a very strong drug with some scary side effects that I wanted to avoid when I originally started Promacta.

As hard as it can be to wait, I'd try to wait for the Promacta to kick in and give it a full chance (however many weeks your doctor recommends at 50mg, then try 75mg for several weeks to see if that can start something. It took me a month to get a response.). Stay with a count as low as possible without other treatments so you can see if Promacta is working. (i.e. don't just throw IVIg into the mix because it seems like there is a trend downward... obviously if you are down in the single digits and have bleeding, of course you need to do rescue IVIg then, but I just mean don't use it prematurely) Even if you go down to the 20s and teens, just try to stick it out as long as you aren't having active bleeding. I know it can be tempting to want to make the counts higher RIGHT NOW, but the best plan is to give things you have already chosen time to work.

Hang in there and keep us posted.
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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60233

  • Cindy1
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Hi momto3boys,
Thanks for your response.
A couple of things...
1. I read about Rituxin again last night and that that progressive neurogenic disease scared me off it again; I agree 100% wait it out.
2. The 144 with the one day IVIG as a bridge. I hope it stays up but who knows?
3. I asked my dr to keep me at 50mg of Promacta to see if it kicks in at 50 before we up to 75mg. I'll be at Mayo next week and get their feedback. Hopefully, I'll have some upward platelet momentum by then on 50.
4. Does your oxygen reading go lower when your platelets go down. Mine seems to.
Best and Thanks,
Cindy

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60235

  • mrsb04
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Wise words Mom.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60236

  • Sandi
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Cindy - I hope you take your medical records with you so Mayo can see what treatments you've had and when. That's important.
I also agree with Mom. You don't get what a toll the treatments can take on your body until you've been at it for a while.

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60237

  • Cindy1
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Yes, I will fax my medical records. I am just getting it organized.
And I agree the less meds the better!
Thanks everyone!

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How do I keep platelets up until promacta kicks in? Just Started promacta 1 year 9 months ago #60250

  • D.Mann
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Be careful with counts above 100 and staying on the promacta. Blood clots are a real possibility. I have a clot due to IVIG spike after spleen surgery. Combining the 2 without knowing how you will respond to promacta is risky. I would make sure you get weekly CBC to monitor your counts.

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