Ready to quit

Janet - contact the PDSA. They may be able to help. PDSA 440-746-9003 or email Carol at rchoxie@pdsa.org. I'm pretty sure that is current info. If not, let me know and I'll dig around.

Thanks so much, Sandi!
What would we do without you here?


Dapsone is a sulfa drug, right? I'm allergic.

Yes, Sulfa.

www.youtube.com/watch?v=HE6EP3Z0PSU

Awwww I miss Rosanna Danna!

I agree...LOL! Sometimes I feel so alone in all of this. I've been in treatment for months this time and can't seem to get it under control. I actually don't know where my count is from day to day..I use the bathroom and have bleeding which shouldn't be there so that's when I run to the lab..I have a standing order and go two times a week as it is..it's the bleeding that scares me to death at this point..one day being at 100K and the next at 2..I have finally filed for disability..my job is stressful but I love it. Just exhausted and worn totally out at this point.

It's great to meet you too!

Good luck DJ! Getting disability can be tough. Been there! Luckily I was approved on the first try. My application turned into a lengthy book and I had documents from several doctors that supported it. Make sure you have a lot of back-up to go with the claim.

Update 9/2/15

As I tend to do, I put off taking action on my problem, thinking things would automatically work out. But on your recommendation, Sandi, I just now dashed off a note to Carol.
I can't go on like this.

Count two weeks ago was 579; last week was 727 so the NPlate dose was skipped. This week, it's 12.

MD is once again pushing splenectomy or Rituxan. I feel like he wants to punish me for being too responsive to NPlate.
UGH

Geez, Janet! Up or down and no in-between! :ohmy:

Update 10/16/15

Count last Tuesday, 318.
This Tuesday, 65.

Obviously, things haven't been any better since my last update.
So I took your advice, Sandi, and sought the input of an A-1 expert.
I don't think it'd be wise to name him here or to relay the exact advice given, because I don't want to be responsible for any errors in relaying it secondhand.
Let's just say, I have hope now where there was only frustration before.

Once again, Sandi... Thank you SO much for the suggestion. I had to muster a fair amount of courage to act on it, but it was so worthwhile!

Janet, I'm so happy for you! I hope you can hang onto that for a while!

3/4/16

Just wanted to update for the record. I find it so helpful to hear other people's stories, both successful and struggling. So, I'm reporting here on my continuing saga in case it could be of any value to others.

Since Christmas, my weekly counts on NPlate have been:
17 - 63 - 208 - 47 - 35 - 16 - 165 - 57 - 120.
I'm up to the 8 mcg/kg dose now and haven't been able to wean off prednisone.

I feel frustrated and discouraged, of course.
Beyond that, I feel weirdly guilty that my insurer had to pay more than $70,000 just for the past year's NPlate bill, let alone all the CBCs and office visits that go with it.

Phooey.

Still on that roller coaster? Darn. How strange! I know how you hate the ups and downs, but at least you are getting ups. I'm just sitting here shaking my head at those numbers. What's up with that?

Lose the guilt, please. It's not your fault. You are doing what you have to do. Many of us here cost our insurance companies a lot of money, that's just the way it is. I'm angry with my insurance company because it took them more than two weeks to approve an MRI. I don't feel guilty at all. That's why we pay high premiums.

Keep us updated!

Booooooo....I'm so sorry to hear that:( Hang in there My insurance bills were over a million last year..! Crazy isn't it...

I wish you all the best!!

That's a lot of jumping around on the count.

Forgive me I can't recall what symptoms you have with the low count. There was a man in our ITP group that would meet every few months (haven't now in years though) and his count stayed around/in the 5000s - I recall him being in a study for a medication but can't recall the name - it didn't work for him, in fact if I remember right it is no longer thought of for ITPers.

Thanks for the tea and sympathy, ladies. Venting helps.

Melinda, my low count symptoms are usually moderate petechiae, nosebleed that oozes (generally doesn't run), an occasional mouth blister, some bruising but not every time. I have never had any sort of hemorrhage or major problem with bleeding.
The thing is, I've never been able to correlate symptoms with count, so I can't use them as a guide for when to treat.

On the day count was 35, the NPlate was raised slightly and pred reduced from 1 mg/day to 1 every other day. You'd think a count would hold steady, or maybe increase a little too much...
But then the next week I was in the tank again at 16. On that day, the NPlate was left the same, but the pred raised to 1 and 2 mg alternating days.
Next count was 165. On that day, NPlate was left the same and pred reduced to 1 and 1.5 alternating. Just a silly 1/4 mg difference resulted in a dip back to 57 the next week. Of course... 57 is a perfect count for NPlate... So we left both drug doses exactly the same. Next week - 120. :pinch:

None of it is making any sense, and I don't feel much better off than I did when I was taking only a little prednisone every day. At least then the count was pretty consistently too low but without the dangerous spikes, and I was dealing only with potential damage from prednisone. Adding an uber-expensive drug to the mix with its own potential for long-term side effects doesn't seem like such a smart plan anymore.

Janet - you're right. It doesn't make sense and it's driving me crazy. I can't imagine how you feel. Logically, 1 mg - 1.5 mg's of Prednisone shouldn't do a thing for platelet counts. I cannot figure this out. The dose is so low that I wouldn't even worry about trying to get off of it. Did you discuss that with the PDSA doctor that you spoke with?

Good Janet, I'm glad that symptoms aren't too bad when your count is low and symptoms aren't all the time when low. I was just wondering if the low count is a norm and "ok" for you, that's why I asked. Boy it sure would be nice if your count could just even out and stabilize. I'm sorry you are having such a time of it! And you are right - this isn't making sense.

Sandi wrote: Logically, 1 mg - 1.5 mg's of Prednisone shouldn't do a thing for platelet counts. The dose is so low that I wouldn't even worry about trying to get off of it. Did you discuss that with the PDSA doctor that you spoke with?

I have two of my own theories about that low dose and don't know which to go with:
1. I respond to a "non-dose" that few other human beings would even notice, which is what my MD believes. It's true that in the past, I've had experiences of hyper-sensitivity to prescription drugs in doses far lower than average. So it's not out of the realm of possibility that's what's happening now.
OR
2. The pred isn't making one bit of difference, and my counts would swing wildly either with or without it.

The PDSA MD said that prednisone works "synergistically" with NPlate, meaning that it can cause NPlate to work too well, and they've found it's better to use NPlate alone. My MD has kept using prednisone to shore up the count that he assumes NPlate hasn't been maintaining.
After I reported to him what the PDSA MD said, our goal became quitting prednisone ASAP. But when the count tanks, he increases it back a tad, the count rebounds, and there we go again.
It seems to me he's chicken to stop the pred. Maybe it will have to be me to put my foot down and say I'll take responsibility for what happens next.

Janet:

I think the only way you are going to know for sure and possibly get the swings to stop would be to get off of Prednisone. That would be best in the long run anyway. It's either that or keep up this yo-yo. Your counts might settle in a nice safe range if you stopped the dose changes with Prednisone. You have the opinion of the PDSA doctor so it's not like you're going AMA. It might take you out of your comfort zone, but it might help long-term.

Thanks for sharing your story Janet- always interesting! Just my 2 cents here-- I would agree that getting off of prednisone would be a good move. From my experience I believe the tiny dose changes of prednisone can make a difference in a sensitive person. I've seen pred shoot my counts up with a small increase.

And as you know its hard to know whats going on when you have 2 variables, so just one drug would be nice- at least you'd find out what Nplate does by itself.

I would find an Nplate dose that you like and stick with it. Try not to fiddle with the dose- I don't see Nplate as a drug that you can fine tune with weekly changes. It seems to behave better with a constant dose. That said, I'll agree its a freaky drug and can be very unpredictable!

I would taper off pred very slowly like .5 alternating days or whatever you like. You may have to weather the lower numbers as you taper off pred completely. I personally don't worry at all about counts in the teens- perhaps if you could get counts in the range of 16-120 you would be (sort of) hovering around 50K.

so you are at 8mcg? I think I will be increasing from 5mcg to 6mcg soon. My counts were 1K with 3mcg + 10mg pred. That used to be a high dose for me, I seem to be losing responsiveness- ugh. So went to 5mcg which brought my counts to 15K. Hemo left the dose at 5mcg Nplate for another week- to give it time to work he says.

Another new weird thing with me- it seems that my Nplate injection is causing my counts to come up on day 4-6. But then on day 7 when I get a CBC they have dropped down again. I have noticed it for a few weeks- symptoms gone on days 4-6 so I think yay! counts have gone up! Then the morning of day 7 I see slight bruises, slight nasal blood. hmmm.. I guess I could get a CBC on day 6- though my hemo might think I've gone mad- which is actually a possibility too! good luck!

Yes, Sandi... I agree. Gotta get off this stuff and see how it goes.

Posey, I've been at 1/1.5 mg for two weeks now. How soon would you suggest I reduce to 1 every day?

One big thing I've been thinking about is how close I am now to the maximum 10 mcg/kg dose of NPlate. If pred actually is boosting its effect, 10 mcg may not be effective.
Only time will tell.

My experience tapering pred- I would go to 1mg for a week, then alternating 1mg and .5 each day for a week. Then go .5 for a week, then alternate .5 and 0 for a week. And done with pred. yay!

Your adrenal glands are probably doing their job fine. Do you have any withdrawl symptoms? Mine were fatigue, sleepiness, body aches like the flu, joint pain. I never got over the joint pain but it did lessen over several months. When I got down to 2.5mg pred I felt a sense of well-being that I believe was my adrenals kicking in- felt good to have no anxiety.

Yes, I'm also concerned about losing responsiveness to Nplate. Its been such a good drug for me. I feel completely normal and with only very slight side effects. I don't want to lose access to any ITP drugs- I may need them. That said, try not to worry, you can always add in a bit of pred- and hey, theres always remission! So keep us posted- it will be interesting if you can prove that pred was working- or prove that it wasn't doing anything.

Another thing I've noticed about these TPO drugs and ITP in general, it that its always changing. For example, I've taken Promacta 4 times and it behaved differently with different side effects each time. In 2014 I took Promacta 25mg for several weeks and it did absolutely nothing for my counts which were under 10K. I figured that 25mg was too low a dose and would have to go to 50mg. Instead I started Nplate.

So in 2015 I had problems with Nplate and went back to 25mg Promacta. I assumed it would do nothing but in 2weeks it brought my counts up from 6K to 22K. I was really amazed.

Count was 37 last week; 289 today without any change in either dose.
I really should be a study unto myself. *sigh*
I'm actually finding myself pondering Rituxan, which so far has been as unthinkable as splenectomy to me.

Have also wondered whether I could get Promacta approved and what it would cost me.
The pluses so far with NPlate are that there have been no side effects at all, and there's nothing out of pocket. Not sure it would be so with Promacta.

Janet- The swings are really wild! Are you still going to taper pred? Yes you might look into the cost of Promacta. Its always good to have options! I didn't like it as well because of side effects. Many people have no side effects or easily tolerable side effects on Promacta. The pill is convenient. But I enjoy going into the clinic every week for my Nplate injections, so its not a problem. Promacta kept my counts very stable, no wild fluctuations at all.

I wrote that I was at only 15K on 5mcg Nplate. My hemo didn't raise the dose. He has always said about Nplate- give it time to work. There was a bit of a conflict because the pharmacist at the oncology clinic thought the doctor must have made a mistake- thought the doc should raise the dose to 6mcg with counts that low. So took a while to get that sorted out before I got my injection.

But hemo was right! My counts came up to 85K the following week. Just had to give the 5mcg Nplate time to work.

I'm so happy because I have tapered from 12.5 pred down to 7.5- and I'm feeling way better! I've been on pred so long that 12.5mg felt like a high dose. Not sure how much the pred was doing to my counts. We shall see later this week. I'm not having any joint pain or fatigue from tapering yet- I'll go more slowly when I get down to 5mg pred.

That's a roller coaster, 37 to 289 yikes! Your body sure has some wacky ideas about what to do about its platelets

Definitely investigate how your insurance deals with Promacta. I have UHC and I just have to pay a $75 copay for the specialty medication and I receive my drug via UPS from a specialty pharmacy. Currently my doctor has me listed as a 75mg dosage which she specified as 3x25mg per day. I was on that dosage previously, but since going down this actually means that I get 3 months (because I'm only taking 25mg per day) for the copay of 1, so $25 a month. When my prescription needs adjusting this will go up, but that's pretty awesome for Promacta in my book. (This is after meeting a $250 pharmacy deductible, but that was a once a year thing, so not too bad)

Every insurance is different, and many are quite ridiculous, but I hope that yours is good and that you can have it as an option to check out! Good luck!

I appreciate your replies.

If it were strictly up to me, yes... I would proceed toward pred withdrawal. But I don't want to 'go rogue' on my MD, who is generally tolerant of my wishes even when he doesn't agree with them.

I hate change and don't like risk. But I think I'll contact my insurer about Promacta so I'll have their answer if/when I want to switch in the future. Going on like this seems unwise in the long term.

Promacta is cheaper than Nplate from what I know. It costs approx $4000-5000. per month I think. Nplate is that much or more per week. So insurance should cover Promacta for that reason, but logic does not always apply with insurance. hah Yes, I understand about going along with a good doctor. I go along with my hemo now, hes so often right- like always. But it took about a year to trust his decisions.

I had a frustrating experience getting my Nplate injection today! I mentioned before that the pharmacist at the oncology clinic doesn't agree with how my hemo doses Nplate- seems like every week the pharmacist is having some issue. I think my hemo is brilliant the way he doses- we are in total agreement.

So today my hemo was out of town. My counts were awesome at 66K- just perfect. yay! The pharmacist saw the count and took the liberty to INCREASE my dose from 5mcg to 6mcg! Luckily the med assistant told me about the increase before she injected me. I was shocked and asked by whose authority? They said the pharmacist was just following "protocol" and has the authority when doctor is unavailable. I refused the injection and it was returned to the pharmacy.

They thought the problem was that I didn't understand Nplate dosing. omg- so frustrating! But since I was ready to walk out with no injection if they didn't give me the dose I wanted, the syringe was brought back with the correct 5mcg dose.

The increased dose of 6mcg used a whole other vial so the bit that was dumped out wasted thousands of dollars of Nplate- not my fault but added to the frustration.

On a happy note- I was delighted with the count of 66K because I had tapered prednisone from 12.5mg to 7.5mg in one week. That is pretty fast for me! Last week my count was 85K so the fast taper didn't make my counts crash. I will stay on 7.5mg pred now for a week, check my counts and taper more slowly.

Happy St Patrick's Day everyone! I usually don't drink much but after today at the clinic I'm enjoying a big glass of Guinness- I guess I can thank the pharmacist for that. haha good health and cheers!

Wow. The pharmacist made that decision? That's just wrong. Since when do you raise the dose when the patient is at the target count? That doesn't sound like the protocol to me. I'm sure he's upset about the wasted vial but that's on his head. Good for you for sticking to your guns!

I'm with Sandi. I don't understand why another hematologist wasn't called in instead of leaving it to the pharmacist to prescribe! Good for you for sticking what you knew was right!

I think what I would do would be to have my hematologist have instructions in my file for what to do should he not be in the office when I come for Nplate - if count is X then do this, if count is Y do that. Then instructions are for all to see and you don't have to fight for what you know is right.

Wow. I'm stunned. Pharmacists aren't licensed to prescribe drugs, only to dispense them. It not only seems wrong, it seems illegal. It surely has to be illegal, doesn't it?
I'm so glad you stuck to your guns.

Speaking of dumping the remaining drug in the vial... Did anyone see CBS news' story on the very same subject just the other night? They limited their facts to cancer drugs specifically, but it applies the same to NPlate. The story is still up on their website, if you're interested.