Promacta question

DJM,

Am I correct that you stopped taking Promacta (while cutting way back on your prednisone) two weeks ago and your platelets are still at 659,000? If so, that seems like a very slow drop in platelets. I hope it is a good sign.

Hello there!
My name is Rene and I too am on Promacta. I never knew that a count could ever reach that high of a number without taking any medications. So what will your doctor do next? I'm guessing your number will continue to go higher. Please share your experience, it is very interesting to hear that someone with ITP is no longer on meds. I wish you well on your doctor visit.

Rene

Rene:

DJ was using Promacta and it caused her count to skyrocket. That is not a good thing since it can cause a risk of serious blood cots. Counts should be around 50k on Promacta; the dose should be adjusted so the counts stay in that range. DJ's counts rose to a dangerously high level, so she stopped the drug and counts are slowly coming down.

Today's count is 258,000 it looks like there dropping 400,000 from Monday to Thursday/Friday's lab work. Now I'm wondering since they are in a more normal range if I should go back on prednisone 10 mg to hold them steady through the weekend and then taper down to 5mg next week. My fear is they will be eaten..or drop back to 1K by Sunday which will put my back in the ER due to my doctors office not being open and I'm going to be starting all this mess over again.. Best case they would hold in the 100's by themselves..but just don't want to chance it. What do you all think? URGHHHHH!

Ideally, you would want to leave the prednisone as is and change only the Promacta, so that you know which drug is doing what. The trick is to know when to restart the Promacta, and at what dosage.

When you were taking 25 mg of Promacta, how long did you give it before trying 50 mg?
How many days after you started Promacta at 25 mg until platelet counts started to climb?

How do you know that the prednisone will hold the count steady rather than send it back soaring again? Difficult one that. If it were me, and I often do things in my own way, I'd do nothing and wait. If my count fell to a 1 or so I would wait until the next appointment and go back on the Promacta at a low dose.

I've just learnt that my count dropped from 161 to 114. The 114 was from bloods done 4 weeks ago, it could be lower by now and carry on down but I'm doing nothing. I have an immunology appointment in two weeks and will get bloods done then.

DJ:

I think Promacta could be your drug of choice, but you need to start that back up slowly, IMO. You seem very responsive to it, so talk to your doctor about doing 12.5 or something for a few weeks and see how that goes.

DJM
Amazing isn't it. 1 week ago you were at 1,399,000 and today at 258,000 - that's a drop of 1,141,000 in one week and I bet you couldn't even feel it happening. If you are like me then that massive rate of destruction only happened when dropping down from the mega count. Once my count was back down into the 'normal' range my rate of destruction went back to the usual week loss of 150,000.
I hope that the same happens for you (or even better you stabilise).

Thanks guys. My doctor still wants me to take nothing. I told him I really wasn't comfortable going into the weekend without any kind of a prop to keep my counts at least steady. I don't want to end up in the emergency room on Sunday with no platelets. I would be ok doing this if this was a Monday and his office was open. I could just run in and get his help. He told me to do what I felt comfortable doing. The prednisone has worked in the past to keep my counts steady but they always seem to wait until my counts has totally tanked. The promacta at this point I just don't know....I'm going to wait it out and pray they level out without tanking over the weekend. I go back Monday for another Lab. I know my doctor is thinking the promacta will push me back into a year or two remission..it did that many years ago with just 8 doses at 25 mg. and then I couldn't take it anymore due to a high count.


Grrrrrr...I just wish we had a crytal ball that told us what to do. I appreciate all of your comments. I'm enjoying being drug free at the moment..but amazed at the steady destruction of platelets..WOW..my body is busy!

I'm going to check with him again on the lower dose of promacta. We just don't see eye to eye on this right now..LOL! Rob was your right..no drugs currently. went from the millions to 200's now. Just going to ride the wave and see what happens over the weekend. Maybe my body will catch it and start producing and stop eating my clotters. Good thing is all my other blood results are all normal now.

DJM wrote: The prednisone has worked in the past to keep my counts steady but they always seem to wait until my counts has totally tanked.

Of course. No good doctor would want a patient taking medication that they don't need and with ITP they never know what might happen. You might not drop low enough to treat again so they will always wait to see if you do.

DJM
I get concerned about weekends when things are going on as well. I tell myself "I will not die so it will be fine." Low platelets might mean horrible prednisone, but it will only be awful for a short time. Then I try and stay really busy all weekend and then can breath again on Monday. I am here from you any time.
Emily

Thanks Emily.

I'm holding my own right now I think....I just have a huge insurance deductible so I try to stay out of the Emergency room. If I can hold until Monday I'm good to stop all drugs and wait it out. If my counts are falling they will be extremely low on Wednesday and my doctors office will be open. I don't like playing with my life over the weekend.

I go on Monday for a count so we will see what happens. I did start taking the 10mg of prednisone to hopefully keep my count propped up some until the weekend is over..I'll go drug free again on Sunday.

Thanks so much for all the support I hate worrying about this...but the bleeds are getting worse for me as times goes on with ITP...eye bleed and internally bleeding this go round..

Have a great weekend!

Looks like I will be heading to the Emergency room at some point today to get a count done. Woke up with blood in my stool again. Same sign I've had the last two times my count was at a 1000. So freak'n done with this mess. I have appointments this morning and then off this afternoon to see what is going on. I could just pop 60 mg of prednisone and go on with my day...but I think my doctor would have a heart attack if I didn't get my labs done first so he can see what is going on.

I feel like I need to go on a anti depressant at this point. And that is not like me at all. I just can't pull out of this I'm to high or to low....URGH! I know my poor body is like what the heck ... fix it!

Have a great Sunday! Sorry to vent.

I am so sorry to hear that. I stopped the promacta for 4 days and that seemed to be enough to get them back down to the 50000 range. My indium scan showed that my body destroyed 80 percent of my platelets in a day and a half and it looked like it took about 4 days for me to react to the promacta. Then i started back up at 25 mg a day. Maybe a dose evry other day would work well for you or even a dose after two days off. Lots of options. Hang in there.

Emily

Our bodies seem to handle ITP a lot a like it seems. My count today was 45K. But with some bleeding..So 25 mg of promacta started today with 20 mg of prednisone to try and hold the count until the promacta kicks back in.

I have you in my prayers. We will get through this..

DJM
I am sorry to hear that you didn't hold the last count and are having some problems.
I hope that the Promacta kicks in quickly - unfortunately I do not have any experience with that drug to offer any advice or support.
Robert

Donna
45000 is great! I am so sorry you have to go back on the pred. Hopefully it will only be for a few days. Yes it seems we have responded very much the same. I am on 12.5 and 25 mg on alternating days. I get tested again on monday. I was at about 240000 last monday so hopefully they have started to come down. They are either too high or too low. LOL nonly another person with ITP could get the irony of trying to get them to come down or go up! Stay in touch. We will both get through this.
Emily

Emily did you have any bleeding issues when they took you off Promacta? I'm back from the lab and have a bleed in my eye. I was at 48K so it's a very strange bleed for me.

DJM when you say a bleed in your eye what do you mean - in the white of the eye or inside the eye, behind the eye?

I get them in the white of my left eye more often then I'd like - recall a photo taken shortly after diagnosis when we were in Hong Kong and the bright red of my eye shows up like a beacon in the night. At that time I was on prednisone. I've had this at various counts.

Sorry that has happened, know it is frightening.

It's only happened twice to me and both times recently. It's a patch of blood that settles in the half of my eye. It is red. The first time my count was 1K this time my count is high to me..but still have the bleed. I've had a stroke the blew my optic nerve behind the eye that keeps getting the blood in it. Same eye same side.. Very strange. But my ITP this time has acted totally out of character. I've had this for 21 years.

I'm sorry you have had the same experience. It is a bit nerve raking. I had my grandson today and all was fine..my eye was fine this morning. We went to Walmart and he asked why my eye was bleeding. Poor guy..

Take care

Luckily no new bleeding. I have a sore at the top of my mouth related to eating something way too hot. It just does not want to heal however. I knew my count dropped today I just do not feel "right." Hope things work out for both of us.

Oh no I'm sorry to hear about your mouth. I go today for another count let's pray the 25mg will do something. I know we both well find answers soon. I'm starting to just want to go have a beer and say to hell with this all. LOL! But I won't...not right now...HA HA!

Please let me know what you counts are Take care of yourself.

DJM I have thyroid eye disease and they keep a good eye (no pun intended ) on my optic nerve. And you know that's the same eye that gets hit, usually it is the whole white that is a bright red - but this started years before the TED.

You are blind in that eye now aren't you?

The only thing I've found that is predictable about ITP is that it is not predictable.

(Had our 3 year old grandson yesterday - he is such a character!)

Hey Melinda,

I'm not blind in the eye but have partial site. Isn't it weird to have it happen. My grandson is my little blessing Isn't be a grandma awesome! I have 6 grandkids..HA

What is thyroid eye disease? I have hashimoto's..

I agree with you on the ITP not being predictable. It amazes me how I can go in remission for years and then bang out and have to fight this like crazy. URGH!

Wishing you all the best!!

Counts today are 211,000. 25 mg of promacta no steriods for 4 days. My body feels like a truck has hit it..have a terrible pain in my shoulder. Going next week for a 2nd opinion and some test. I have met 20,000 insurance deductible so I'm going to get allergy tested along with anything else I can possible think off while it's covered. I guess I will go see if I have grown another spleen.

Anyone have any additional ideas for test that they would have done?

Glad you are off the steroids. That might be why you feel lousy. 211,000 sounds good to me. It will be interesting to see how you do on the promacta without the prednisone. Fingers crossed things stabilize!

Counts were 211K on Thursday admitted in the hospital Saturday with a count of 1,000 - decadron shot, 60 mg of steriods, 25 mg of promacta, transfused a bag of platelet and my count was 71K today and I could go home.

I'm mentally exhausted...can't figure this out. Wondering if I do the 37.5 mg of promacta if that will hold the count. 50mg sends me into the millions, 25 mg does not hold them without the prednisone so I'm guessing it's actually the prednisone holding the count.


So extremely frustrated with this..21 years of it..5 months and counting this severe.

I am so srry to hear that. Totally sucks. Maybe the higer dose is needed if there are no steroids.

THanks Emily,

Went into today count at 42K 25mg of promacta 50 mg of prednisone. Talking about doing Rituxan..I have refused that treatment for years. But I may try it..just feel like I'm toxic at this point to keep a count up.