Is Promacta not effective if I crash after I am on it?

Well, it is hard to know why they shot up but maybe the 75mg compounded with the ivig and dex pulse. who knows!?
But since plts are going down 50,000 a day and Friday they were 161,000 it made sense to start 75mg Promacta this morning.
Fingers crossed I don't tank.

Cindy1 wrote: ... Meanwhile I am still hoping that your low dose prednisone idea will get me through with no big crash...

LOL, I think if you can just get down to taking only two ITP drugs at a time would be a major victory.
Good luck with counts leveling off. The move up to 75 mg will hopefully sufficiently counteract the steroid taper.

I'm hoping!

HI,
I just reread your taper info. It is very helpful! I am working on a VERY slow Prednisone taper to hopefully keep the platelets in a safe range. I have been down to 7.5 for a week. The GP thinks keep 7.5 for another week to get me through Thanksgiving. It seems like a long time to be on 7.5 but it isn't, right?
I restarted Promacta 75mg on Nov 11. It could take a while for it to kick in fully. Still on gluten free and homeopathics which I started 9/22.
Good news is I am on day 28 since IVIG /Dex 40mg burst. Longer then ever other then the 7 week cycle while I was on triple antibiotics. (and FYI my WBC are back up from under 3 to as high as 5.9 since 11/1. (Guess I did not need the bonne marrow biopsy. I bet they were suppressed from the every 14 day IVIG/Dex bursts)
Thanks to all of you for sharing your knowledge and your support.

Hi,
I posted a big update just now so I will not bore you with reposting it.
I just wanted to ask how your mom is doing.
Also wanted to tell you I reread this post you wrote and it is so helpful to realize that it is normal for this to take so long to stabilize.
Thanks for all your support and knowledge sharing.
. Cindy

Hi, I wrote this a few days ago and just now as I was logging in to ask your opinion on my current numbers and treatment going forward realized that I never sent it.......
I posted a big update just now so I will not bore you with reposting it.
I just wanted to ask how your mom is doing.
Also wanted to tell you I reread this post you wrote and it is so helpful to realize that it is normal for this to take so long to stabilize.
Thanks for all your support and knowledge sharing.
. Cindy

Hi all,
Not sure what to slightly adjust to keep platelets from getting over 200,000 again.
I am on 75mg Promacta and 6.5 Prednisone as of today, 6.75 past 3 days before. Thinking if
I change anything it should be the Pred not the Promacta. Not sure if I should go down to 6 or stay at 6.5 Prednisone tomorrow. Then I will blood test wed then Sunday.
164 today up from 123 on Friday which was up from Wed see below:
11/6 -333
11/8 - 236
11/10 - 161
11/14 - 119 wed
11/17 - 123 fri
11/20 - 164 mon
Any thoughts are greatly appreciated.
Cindy

Your body reacted to the 75mg Promacta faster then you lowed the dose of Pred. Unless you taper quicker you'll have to lower the Promacta dose. 15 mg was too much Pred. 6 something is way too much too.

Don't taper your pred too quickly you will feel dreadful, maybe do 75/50 of Eltrombopag. It's very tricky tapering steroids and adjusting TPO dose at same time, been there, done that got the T shirt. Still not completely got my Eltrombopag dose sorted but doing 25/50 on alternate days keeps me at about 50 unless I get any sort of infection then my count always drops

Cindy, what did you end up doing? Cut the 75 mg Promacta out for a few days or drop to a lower dose? I am really hoping that you can get down to 50 mg Promacta with zero Pred.

Hi Hal,
Thanks for checking in. Here is the current story. Platelets today on 11/26 were 266. I'm really wanting to hold the Promacta for a day because the Platelets are getting so high plus I am going to need to skip 2 doses between now and Wednesday morning because I am low on the 50mg tabs of Promacta and they are not getting the medicine to me until Wednesday. So I will not take a dose in the morning.

Yes the hematologist did say cut the Promacta to 50mg whn I was at 203 0n 11/22. I went to 50mg Promacta on 11/24. And I am slowly weaning the Prednisone. Today was down to 5.25 and I'll stay on that a few days and down .5 alternating every 3-5 days. I too hope I can get off the Prednisone without the Platelets bottoming out.

Thanks again for checking in and the idea of the Prednisone.

Cindy

Hi All,
I am now at 311,000 platelets on 50mg promacta since 11/23 before that on 75mg Promacta. I am tapering slowly off prednisone. I am down to 4.5mg today Prednisone .
My hematologist said stop the Prednisone cold turkey as he has suggested I do before because he is confused what is keeping the platelets up. I get that but I want to wean slow off Prednisone per all of you and my gp to prevent a platelet crash again. It is day 45 post my every 2 week IVIG and dex pulse reality and I hope to keep off the IVIG!

I would like to go down to 25 mg Promacta but do not have that dose. Only 50 and 75mg pills. Is it bad to take alternate 50 one day and nothing the next until the platelets level out?

Platelet Count
150 - 400 10*9/L
476 - 333- 236- 161- 119- 123- 164 -203 -266 -311 taken every 4 days apart 311 was today.

Any feedback will be appreciated.
Cindy

I wouldn't start alternating doses yet. You've been too unstable. I'm not crazy about your counts that high, but changing doses could make a mess.

Cindy1 wrote: ... he is confused what is keeping the platelets up.

Good to hear Cindy. That's what you call a 'high quality' problem - with Promacta all but written off as useless a few weeks ago.

Cindy1 wrote: ... I would like to go down to 25 mg Promacta but do not have that dose. Only 50 and 75mg pills. Is it bad to take alternate 50 one day and nothing the next until the platelets level out?

A 50/50/skip would be safer than 50/skip.

Going from 164 to 311 in 12 days is a pretty big change. Can you think of any reason why it went up like that? If not, I can think of one: STABILITY

Hi Sandi,
Thanks for your advice.
I hear you but I am concerned about really high numbers. And most people on Promacta try and stay at 50,000 to 100,000 max right? Here are my numbers with dates which might be helpful. They are going up 40-60 a day which will bring me up to 400,000 in no time. Do you think Platelets are still rising from the 75mg dose? And the 50mg dose that I started about 11/23 has not kicked in yet?
Very confusing and hard to figure out.
Platelet Count 150 - 400 10*9/L
10/16-5, 11/1 -582, 11/3 -476, 11/6- 333, 11/8- 236, 11/10 161, 11/14- 119, 11/17 - 123, 11/20-164, 11/22-203,
11/26-266 11/30-311
Thanks!
Cindy

What about Hal's suggestion 50mgx2 d and skip one day?

Hi Hal,
I wrote to Sandi and said maybe I am still on the 75mg ride? Also, I have recently decreased dairy?
50/50/skip could be a good idea. I am afraid to be too high. sigh.
I go to my homeopathic in the morning, I'll see what he says.
Thanks!

Did you ever get the 1mg pills? I hope so. It is hard cutting the Prednisone pills!

Hi to all,
Here is my update:
My platelet count Monday, December 11 was 192, this past Friday, December 8 was 210, down from last Monday at 280 on December 4. (I stopped prednisone last Wednesday, December 6.)
The good news is that I am day 58 post last IVIG rescue.
*Promacta was decreased from 75mg to 50mg on Nov. 23.
*Last dose of Prednisone was on December 6.
Date - Platelets - Prednisone:
11/26 - 266,000 Platelets - 5.25 mg Prednisone;
11/30 - 311,000 Platelets - 4.5 mg Prednisone;
12/4 - 282,000 Platelets - 1 mg Prednisone;
12/8 - 210,000 Platelets - 0 mg Prednisone; (*12/6 was last day of Prednisone)
12/11 - 194,000 Platelets - 0 mg Prednisone.
Next blood draw Friday. Plan is to stay on Promacta 50mg and watch what the platelets do now that I am one week post stopping Prednisone. As time goes on we can adjust the Promacta but need to wait and see for now.
Thanks for all the help along the way.

Cindy1 wrote: ...
12/11 - 194,000 Platelets - 0 mg Prednisone

No steroids and just Promacta. Yea !

Hi All,
12/15- 200,000 Platelets 8 days post prednisone.
Still on 50 mg Promacta and taking homeopathics including Skate liver oil which is supposed to boost platelets. Also gluten free and reduced dairy intake.
Hal, I'm hoping your idea of the low dose prednisone to buffer the IVIG crash worked! Thanks for the idea!
How is everyone doing?
Cindy

A 200 count? A couple of months ago would not have thought you would get that high on 50mg of Promacta. But here we are, its happened. Amazing.

Have you or your doc figured out a plan going forward? Stick with 50mg for a while? Try a 50/25 split and see how that goes? Or, transition right into 25mg since you're doing so well on 50mg? If you get into trouble, hone your skills on a quick steroid burst rescue.

I know 200,000, yay! Remember the dr was ready to switch me to Nplate thinking I was not responding to the Promacta at 75mg! I wonder if the homeopathics are kicking in too? And the skate liver oil? And the Rife treatment that would have eradicated any Parasites I had. And the antiviral homeopathics?
It is amazing to not be going every 2-3 weeks for IVIG! I am still waiting to make any changes in Promacta to make sure that Platelets stay stable since I am just day 10 post stopping the Prednisone that you recommended I take. Thanks again for that!
I am being cautiously optimistic.
How are you?
Thanks again to you and everyone who has been helping me along this very complicated and hard journey. Everyones advice has been and is invaluable!
Cindy

No need to thank me for the Pred suggestion Cindy. Some theories work out, others don't. I think Posey's own experience surely helped. Then momto3boys actually did a Pred rescue real time. Wow. It was so crazy with crashing counts while taking 75mg Promacta. Gave the appearance Promacta wasn't working. I guess it shows how nimble and strong our immune system can be at launching an attack.

As for me, nothing much going on. I'm just idling - waiting for Danazol to kick in. As I understand counts can move up slowly. Next check is at end of the month. With any luck they will be high enough to allow taking Promacta every other day.

Hi,
I hope it did not seem like I was ignoring the wonderful help I have gotten from everyone on this site!!!!!
I agree 100% that momto3boys, Posey, Sandi, DMann, you and many others have been my rocks in getting me through this ITP trip and I am sorry if my message did not refelect that. Absolutely momto3boys, Posey, Sandi and many others chimed in to assist me with their expertise on how to use the prednisone and how to wean off it. And a BIG, HUGE THANK YOU to everyone that helped me with the Prednisone issue!!!!!
It has been such a hard journey since 5/1 and I am forever indebted to the people on this site for pulling me through as well as helping me understand treatment options, amounts of treatments and timing of when to do what. My head was spinning for much of the time over the past several months and everyones advice is what pulled me through and helped me make informed, good decisions. Hopefully that clears things up.
Now onto my current issue...
265,000 platelets today 12/19 from 200,000 on 12/15. I am cautiously optimistic that they will stay up but am concerned about them being too high. From the Promacta table, "over 200,000 I should decrease the Promacta by 25mg and then reassess after 2 weeks". I have a call into the doctor for his input but am curious what everyone thinks given my history. Would you suggest I stay on 50mg, decrease alternating 50 one day 25 one day, or just go down to 25mg?
I have been on 50mg Promacta since 11/23. Prior to that I was on Promacta 75mg.
I have had no Prednisone since Dec. 5.
Please let me know what you think. I know some of you have written that 50,000 to 75,000 platelets is a good range. I want to be safe over the holidays and am getting on a plane the first time since diagnosed for a short 5 day trip to visit parents.

Happy Holidays and Thanks to everyone!
Cindy

I wouldn't go right to 25 mg's. For anyone else I might suggest that, but not you! 50/25 if you do anything.

I know nothing about Danazol. Good luck with luck with it kicking in.

Hi Sandi,
Sadly you were right, it was probably too soon to decrease the Promacta. I decreased from 50 mg to 25 mg
promacta on 12/20. Then due to high counts, per my Denver hemo I started taking 25mg on every other day as of 12/31. So that decrease coupled with a sore throat virus that started 4 days ago has caused a decrease in platelets to 89,000 today.
Here is detail.
11/30-311, 12/4-282, 12/8-210, 12/15-200, 12//19-265, 12/23- 325, 12/28- 334, 1/2- 262, 1/5-202, 1/9 -89.
Here is the plan: My GP doctor said to increase to 50mg Promacta a day and add low dose Prednisone. I am waiting if he is suggesting 2.5 or 5 mg. I will also reach out to the hemo.
Frustrating but hopefully I'll get my finger in the dike before the Platelets go way down.
Any thoughts are appreciated

Okay...89 isn't too bad. Just watch that you don't shoot up too high again.

Thanks for your reply.
I am wondering if I even need the prednisone or are we overreacting? Does it hurt to do 2mg of Prednisone a day for 5 days?
I am asking the Mayo dr what he recommends too.
Thx