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

Sandi wrote: My Rheumatologist just cut my script from 12.5 to 10. She refuses to give me any more 1 mg pills. I argued that it is NOT a safe taper (with the nurse) who said, "I don't know what to tell ya!" I was fuming. I asked for an appointment to see the doctor (who I haven't seen since last January because she was out on leave), and was told that there are no open appointments until January. I'm looking for a new Rheumatologist. I am really feeling the effects of that missing 2.5 mg's after being on the drug for 12 years! It's so not fair.

Ugh! That is the worst! I'm sure you are not feeling well, that's a crazy jump for such a frustrating reason. Of course, finding a new specialist will take time to get a new patient appointment (often months!) with no good care in the interim. I'm sorry to hear that you have to deal with that. I hope you can get lucky and get in quickly with a new office and they can fix this unplanned prednisone dosage change! Hang in there!

Begged my hematologost to give me low dose Prednisone to keep me from having the post IVIG and dex pulse crash as you all suggested. First he flat out refused then he prescribed medrol dosepack for only 6 days. That is not going to get me over the hump. So I put a note into my primary and am asking him to prescribe me prednisone. I actually have a bunch of 20mg prednisone pills left over but I was hoping to just do like 5-10 mg or so. Thoughts on dose and why these doctors so problematic?!?

Sandi-sorry for your issue too!

Wow, refused to prescribe it? I can sort of see his point. I never thought I would ever suggest Pred to someone myself. People get on it and then can't get off it. Don't they have cheap pill spliters? Split the 20s down to 10s. I guess the Medrol is 4mg.

Well Hal and everyone else that chimed in, you did it! Maybe I will get off this rollercoaster ride finally. My primary agreed with you as did my homeopathic dr. I am to start 15 mg a day of Prednisone for 5 days and then reevaluate where to go from there. (15 is enough right?) Maybe we actually caught it in time to break the crashing platelets cycle; I am on cycle 7. Hopefully, lucky 7! Fingers crossed, I am on day 10 today. If all goes well I will not get my blood tested for a while. I've been using mouth blisters and blood streaked mucous as my indicator to get checked. But even if I am low, which we hope won't happen, I will try not to get IVIG but we all know how that goes.
So anyway thanks so VERY MUCH guys....

I tried low dose Prednisone when I got sick of the high doses. It worked to keep counts in a safe range (20 to 40k), but that also got old after a while. As soon as I stopped, counts dropped again. I did that several times, but I was very responsive to steroids.

What is wrong with thee drs!?! Why not listen to your needs? It is such not a big deal to the dr.

What do you mean it got old.? Tired of taking it? I get that but wasn't sure.
I am hoping 15mg is an OK amt to start on for 5 days. I was just trying to find what people were on to stay stable in my phase.
Good luck with the weaning off.

Just reread everyones posts on mg. I just took the 10 mg and might stay at that. I am already feeling the bump. I think I want to do 10 but if you all think 15 might help me more in my fight against the dreaded platelet crash let me know. it is just for 5 days then i'll go down. Thankfully my GP is giving me this low dose prednisone option.

Cindy, I think the situation is that everyone is a little different when it comes to steroid sensitivity. This makes it hard to make a recommendation.

Might pick a dose and see if you can go an additional several days past what you normally go for rescue, then check counts. Maybe even a week? The alternative I suppose would be to go several days past, start a taper, then see how long it takes to get symptoms.

Cindy about the prednisone: I agree with Hal that everyone is different so you just have to play around with it. My comments are not meant as advice, you should ask your doctor how to dose it. I'm pretty responsive to prednisone and I have 9 years of experience with it. I always seem to respond the same way so thats nice, I can sort of depend on it. My hematologist lets me decide my own prednisone dose now for rescue or tapering. Thats nice- I would probably do it my own way anyway! haha maybe he realizes theres no point telling me what to do.

If I'm in some kind of an emergency situation like once when my counts were 1K, I will then take 20mg for one day as a boost to get me above 10K- I got an increased dose of Nplate that day also. Then I'll drop back to 10-15mg until the Nplate kicks in- it takes 3-5 days. 10mg will give me a boost also. I watch my symptoms. If I'm only on prednisone for 5-7 days, I don't need a slow taper. I go 10mg, then 5mg for a few days, then 2.5mg for a couple days then none.

Sandi- refusing to refill the 1mg tablets sounds very irresponsible of the rheumatologist. I hope you find someone soon who will be reasonable and will work with you.

Cindy - what I meant by 'got old' is that counts only stayed up as long as I took it. I did it for about two months then stopped. Counts fell and I did it again for a while, then stopped. Counts fell again. I don't know how many times I did it. I knew it wasn't a good long term solution so to continue doing that was fruitless. I thought it was better than the high doses that went on for months but I never really got anywhere with it.

Excellent Posey. I didn't even know if what I was suggesting was even feasible. Sounds like you've done it more times than you'd like.
Even better, you've given an example with Nplate timing in it - which will be great if Cindy ends up being non responsive to Promacta.

Poseymint, thanks so much for the summary. That is very helpful although I get it that everyone responds differently.
You are lucky to respond so great and consistently to small amounts of Prednisone. The only Prednisone experience I have is 6 months ago when I was first diagnosed with ITP. Prednisone 100mg along with triple antibiotics and I got toxic and that did not go well, but many things were happening at the same time.

I took 15 mg Prednisone today and will for 5 days then will taper a bit depending on the numbers and my GPs thoughts probably down to 10mg for 5 days then 5mg then who knows. Hal started me thinking that a little prednisone could help my body decrease its strong rebounding response from the IVIG / dex pulse /platelets tank unpredictable cycles I have been living.
For this cycle I am on day 11. I did go 24 days last time, highest "remission". Last 4 cycles prior to that it were between 15-18 days.

Hal is right, that is great information about how you deal with Nplate. I might need to go onto Nplate, I was given 3 doses: 5/19, 7/12 and 8/9. (And to tell the truth, for me Promacta dose time is tough with having to wait 4 hours to take it after dairy.) Have to wake up during the night, that can't be good...but first world problem!)

Question to all-
But a real Nplate issue is that my Hemo already said he wants to start me on the highest dose 10mcg/kg due to "the severity of my disease". 10mcg/kg is maximum dose and initial dose is suggested at 1 mcg/kg. I am so not feeling good about that. I think he should start me at the lower dose. What is the hurry to go against the recommended dose after 6 months of rollercoaster rides? Thoughts on this one?

Thanks!

Cindy1 wrote: ... Question to all-
But a real Nplate issue is that my Hemo already said he wants to start me on the highest dose 10mcg/kg due to "the severity of my disease". 10mcg/kg is maximum dose and initial dose is suggested at 1 mcg/kg. I am so not feeling good about that. I think he should start me at the lower dose. What is the hurry to go against the recommended dose after 6 months of rollercoaster rides? Thoughts on this one?

Possibilities:
- do it his way
- convince him to do it your way
- compromise and do something in between
- fire him
- he fires you

FWIW: Whenever negotiating it's usually best to go for compromise - so that each side sees a win. Might want to find out how he wants to do it. Tell him how you'd like to do it. Then see where compromises can be made. Unless you want to fire him, tell him at the beginning something positive like 'I'm sure we can figure this out'.

Starting you on the highest dose of N Plate is not only a stupid idea it is downright irresponsible and dangerous. Stick to your guns and follow the protocol. Protocols are there for a reason...they save lives. What is your haemo's evidence base for breaking protocol, ask him. I would be thinking very seriously about finding a new haemo.

I take my Promacta at 2am. I have tablet in egg cup by side of bed + a drink of water. I'm awake for about 15 seconds. Much easier than the dietary hassles involved taking it at any other time. Ok it's a little bit of a pain when I'm on a night shift as I have to watch my calcium intake but as I only do 2 shifts a week and only have a spot of milk in my tea I cope.

I agree that the dietary requirements of Promacta are not really a hassle. Being old we eat early and it's no problem to avoid dairy in the evening. If I do go out and eat later I just take my pill when I waken up during the night and again being old that is normal rather than exceptional. I think it is easier to adjust the dosage of Promacta. I never quite trusted my maths or the maths of the staff who calculated my dosage when I was on N plate.It was also a hassle to take it on holiday because it had to be refrigerated .

Cindy1 wrote: Question to all-
But a real Nplate issue is that my Hemo already said he wants to start me on the highest dose 10mcg/kg due to "the severity of my disease". 10mcg/kg is maximum dose and initial dose is suggested at 1 mcg/kg. I am so not feeling good about that. I think he should start me at the lower dose. What is the hurry to go against the recommended dose after 6 months of rollercoaster rides? Thoughts on this one?

Thanks!

Cindy, based on your treatment history and all of the concurrent treatments, I haven't seen any signs of you having any kind of a competent hematologist (even though it looks like you've had one or two different ones). If you throw 5 treatments at a patient and then get wildly fluctuating numbers, you don't blame the patient and say that their disease is severe based on that data. You have managed the disease so poorly that you have created crazy peaks and valleys through the incorrect use of treatments.

Starting at the highest dose sounds pretty dumb to me. There are inserts that come with medications for a reason. There is a suggested starting dose for a reason. He's misused all of the other treatments, so it's not surprising that he's planning on misusing this one as well. If his goal is stability, his method sure sounds like insanity to me. Going against all recommendations isn't going to yield stability.

And regarding promacta dietary stuff, it's been pretty easy for me to manage. Not having shift work surely helps I just take it whenever I wake up during the night and done. No conflicts or worries. It gets a nice buffer of no food before or after. Good luck!

Hi momto3boys,
Thanks for your (and everyones) input and thoughts. It helps to know that I am not crazy trying to start Nplate at 5 which is the recommended treatment amount! And it is crazy to me that he feels it necessary to impose his will, what about its my body and team work? I do feel he is just shooting from the hip and with knee jerk reactions and without looking back at the info. For example, last week he said it looks like the Promacta is not working. I was just on the 75 mg dose for 4 weeks at that time.

I am thinking give it 8-12 weeks and I have to look back at everyones posts to verify. It makes sense to stay on low dose 15mg prednisone just while it kicks in, right? It might save me from the IVIG infusion cycles, I'm hoping.

I am really wanting the Promacta to work. I am going to start the middle of the night pill. That should helps things out.
Thanks!
Cindy

Hi Margaret,
Thanks for your input on TPOs. I am going to start taking the pill in the middle of the night when I wake up. And, I agree, Nplate is problematic between the doctor having control over what dose he orders, the nurse having to get the amount correct, and travel restrictions, there are too many potential problems.
Thanks and be well!

Hi mrsb04,
Thank you, thank you, thank you. I was beginning to wonder if I am just becoming crazy and overly worried. But it really makes sense to start at the recommended dose and I hope I don't have to come to the point that I need to be on Nplate but if I do I will stick to my guns and using Hal's negotiation skills explain that looking at my historical response to Nplate that I did respond well it was that it was not given every week but every 2 weeks. So the 5mg dose with an every 1 week frequency could potentially be effective at stabilizing my platelets. Hi evidence is he said he has done it before, and I take what I read too seriously.

I consider finding another hemo but if I can stabilize on Promacta, then I can just stay with him. Really none of them have too much experience with ITP. One girl I know got Rituxin out of the gate with her hemo 2 years and has been stable but I don't want to do Rituxin quite yet due to potential side effects.

The thing I don't understand is how to transition over to NPLATE if I have to. I will cross that bridge if I come to it. But hopefully I will be able to be stabilized on Promacta 75mg and that won't be an issue.

I am doing the 2am Promacta alarm but if I wake up before then I can take it at that time. Thanks for your suggestions they are all so helpful!

Happy Saturday!

Hi Hal-
Great advice! I needed that negotiation tools reminder!
Here's my approach if it gets to that point but I am just on week 5 and 2 days of Promacta 75mg, day 3 of low dose steroids and 14 days since my last IVIG and dex burst.
I am not saying anything unless I need to change to nplate. At that time, my negotiation approach is that my historical response to Nplate is that I did respond well at 5mg. It was that it was not given every week but every 2 weeks so I crashed in between doses. So the 5mg dose with an every 1 week frequency could potentially be effective at stabilizing my platelets. And I am more comfortable starting at the dose recommended in the protocol since I did respond to it in the past.
Let me know if you have other negotiation ideas.
Thanks and Be Well,
Cindy

I just did a bit of on line research and it says...In clinical studies, the platelet count usually begins to rise 7 to 14 days after starting therapy, and decreases over 7 to 14 days after stopping eltrombopag.
I guess that is when we are not looking at the IVIG and Dex burst cycles.
Oh well, I guess time will tell if it works for me.

The starting dose for Nplate is 1mcg per kilogram of body weight. I think the doctor is reckless to start you at 5mcg but its a lot better than starting at 10! good luck

www.nplatehcp.com/dosing/

No he wants to do 10! This is what he wrote: I will start with 10 mcg/kg.
I guess what I was meaning to say is that in the pat I got 5mg/kg 2 of the times and on that the platelets went up to 430. The 3rd time he made me get a higher dose against my preference at 8 mg/kg and my platelets went up to 178 that time.
Thanks for the note and link!

Cindy - I would just flat out ask him to find and read the protocol with you. It should be right in the inset that comes with the drug. Or, you could print it out and make it easier for him. Then just nicely say that you prefer to stick to protocol.

Cindy
In my humble opinion

You should give the 75mg /day of Promacta, aka Eltrombopag, a 4 week trial.

If that fails to get your count to above 30 then think about N Plate, aka Romiplostim {my haemo is happy for my count to be above 10; I am happier at 30}
Start N Plate at 1mcg/kg per week and titrate up at 1mcg/kg each time as per protocol
Make sure your insurance company will cover you if your haemo refuses to adhere to protocols

Hi Sandi,
Good idea to have it in hand or send him the link Poseymint shared and good way to approach it. He knows it I'm sure but thinks his way is better. How can he fight that I prefer to stick to protocol? I am not doing anything yet.
Also thanks for making me aware of avoiding too much sun. It has been helpful.
How is your Mom doing?

Hi Mrsb04,
Good opinions! Thanks!
I wonder if my bone marrow biopsy on 10/12 threw things into a tail spin because I was into day 20 of "remission" my longest past 18 days then 4 days after the biopsy I was down to 5,000. So I agree I may be dragging the Promacta out too long but if I restart my 4 weeks from that date of the bx - Oct 16, it will give me 2 more weeks to see if it works. I'm feeling like that gives it the best shot at working.
I'm on day 13 s/p last IVIG and dex burst and hoping I can make it on a long remission. I'll get checked on Thursday (day 17) because I am trying to go up to the mountains for 2 days this weekend. I'm on the Prednisone 15 mg. Lots of luck!

How did your sleep go?

Cindy - technically, remission starts once a person goes about six months with no treatment. Counts do not have to be normal and in that case, it's a partial remission. It's not really remission if you go 20 days between treatments. There are certain things that can cause counts to go up or down, like medications or illnesses, but try not to read into everything that happens as a cause for dropping counts.

My mom is still in the hospital....has been there since Wednesday. She had a vagal episode at assisted living and when she got to the hospital, the also found a UTI. No surprise there, she gets one every 6 to 8 weeks and ends up back in the ER. Thanks for asking. Hopefully she will get out tomorrow.

Hi Sandi,
There are certain things that can cause counts to go up or down, like medications or illnesses, but try not to read into everything that happens as a cause for dropping counts.
I am just so confused. I am trying to get my arms around what is going on and
1. maybe it is as simple as the Promacta doesn't work for me (I am still sticking with it) or
2. as complicated as it is due to the post IVIG immune system ramped.
In general do must people have the platelet drop like me 14-20 days after the IVIG and dex?

I'm glad your Mom is improving. UTIs become a big deal with the elderly. Don't hear too much about the Vagal episodes.

Thanks for helping me understand this new question I am trying to sort out.

Cindy