Ready to quit

Thanks for the replies and support! Its so nice to be able to share with people who actually KNOW whats going on with ITP and Nplate. Being a patient can feel like a very powerless position.

There was another hematologist on duty to cover while my guy was gone. There are eight oncologists in the clinic so theres always someone. But I guess the hemo on duty was with a patient so the pharmacist took charge to increase the dose. Maybe its legal because the pharmacist was only adjusting the dose and not prescribing? don't know.

Though Nplate is a tricky drug, the dosing instructions are fairly simple- when counts are equal to or greater than 50 you stay at the same dose. I have no idea what the pharmacist was thinking?! Perhaps they never took the time to read the dosing instructions. I suspect it might be they had the idea that counts should be normal. There seems to be a lot of people- doctors, nurses, patients and now pharmacists who just don't seem to "get" the 50 thing. Why is that so hard to understand- counts aren't meant to be normal but around 50.

Also as others have discovered over the years- chasing the counts by changing the dose every week doesn't really work well with the TPOs. Leaving the dose the same, weathering the ups and downs is illogical unless you've had experience with these drugs.

Thanks Melinda for the suggestion. I was thinking of something like that too. I want to first request that the pharmacist NOT have authority to ever adjust my dose again. And if thats too unreasonable for their policies, then the parameters should be clearly in place as you said.

Yes, I'd like to see the CBS story about dumping chemo drugs- omg I'll bet so much gets dumped.

Drug waste is unbelievable ..over here in the UK any prescribed drugs returned to a pharmacy are destroyed even the boxes that are still sealed shut.

poseymint wrote:
Yes, I'd like to see the CBS story about dumping chemo drugs- omg I'll bet so much gets dumped.

It's billions of dollars worth, according to the article.
www.cbsnews.com/news/americas-3-billion-cancer-drug-problem/

Hello everyone,

I can relate to the wanting to guit. I'm saying what's the point and just live my life with a low count. I have had my spleen removed in Octber 2014 it work for a while then August of 2015 my count went as low as -4 and would not go up for two months and each time I was on 100mgs of predisone then they tryed promata and my count went up to 533 and they stopped the promacta now a few weeks ago March 2016 count was back down to 4 so back on promata and the 100 MG's of predisone count was 45 last week and this week down to 40. The doc wants me to try the rutaxin and myself and my family don't think I should since it is not guaranteed to work and we don't like what we read about the side effects. I mean whats the point of trying it when the doc says it may work for 6 months or a year or maybe 5 years. Can you guys give me some input please?

Jbaze:

In some situations when counts do not stay up, the goal is to maintain counts around 50k. That is considered to be a safe count. Your doctor is throwing too much at you; you don't need all of that. If you can keep counts of 30 or 40 with one medication, that's all you need. Promacta can take time to work and you should stick with the dose for a while unless counts go up too high. At that point, you lower it. I'm not sure what your doctor is trying to accomplish here.

Promacta should not have been stopped completely when your counts got to the 500's. The dose should have been lowered and you should have been kept on it. Promacta is different; you don't just stop it when counts respond.

I think your ITP can be managed well if you have the right doctor. No wonder you are frustrated.

Wow that is hard to believe that pharmasist changed dosage and so frustrating to waste something so expensive.

Cindy- yes 1 vial of Nplate costs minimum $2500. and maybe more. Here is the update to my story of pharmacist increasing my dose.

Early this week I called in to my hematologist's office and told my story- left a voice mail. Just wanted to let everyone know that I'm on the perfect dose, and I don't want anyone to change my dose except my doctor. It seemed a bit unreasonable but its really what I want. I don't think anyone else knows how to dose Nplate! At least not for me. For me it works to keep the dose the same, even if the counts drop to 20 or teens, they may come back up the next week. Better to weather the low counts for a few weeks to see if they are going to stay low or come back up.

Today I went in and counts were 70K- yah! I'm happy with that, still taking 7.5mg prednisone and tapering. There was a note on my CBC requiring approval before injection. Hematologist came in to check the counts, check the dose, and ask me if I wanted to lower the dose or keep it the same. I chose to keep it the same. Nothing was said directly about the pharmacist incident but it was clear that my hemo was IN CHARGE and taking care of it. Hes pretty much the classic Alpha male and can be fairly intimidating when he wants to be. haha its good to have him on my side.

Wow that is expensive. Over here in the UK it is £482 for 250mcg which is about $620

Good for you, Posey! You obviously made the right decision last week.

Yes, thanks Sandi. I feel really good about standing up for myself and what I know about Nplate. As I said, yesterday my hemo mentioned we could lower the dose but would never suggest increasing it at these counts. Good to be reassured that we are still in agreement, even though pharmacist doesn't "get" it.

MrsB- very interesting! The clinic I go to charges my insurance a whopping $12,000. every week for one dose of Nplate! that is 2 vials for me. So $6000. per vial. Is that approx $8500. pounds? whoa That may include CBC and injecting nurse ($300). My insurance haggles the price down to $4000. per week. Our health care in the USA is really a crazy system! hah

Yes it is. I think a blood test here is about £25 and generally we inject ourselves so total cost for 2 vials + bloods approx 1400 dollars a week all paid for by our wonderful NHS. Long may it last but under our current government I am not holding my breath.

Sandi

I am thinking of bringing my dose of promacta down to 25mgs myself. What do you think? I am going to look for another doctor but I believe that no one in North Carolina knows anything about the ITP. I seems like I am going to try another state.

I think you should work to get off of Prednisone and keep Promacta the same for now. The problem with using both of those drugs is if your counts spike, you won't know which drug is doing it and therefore, won't know which drug to cut back. I'd stick with Promacta and if counts spike, you'll need to lower the dose then but Prednisone really complicates things here.

As long as your counts stay where they are, you're okay. Keep looking for a new doctor, there has to be one somewhere.

Sandi

Thank you Sandi I am so glad that I found this site and happy that I know you. All your advice has been so helpful to me. HAPPY TO BE A PART OF PDSA

We're happy to have you!

Update 6/28/16

I've been tapering off prednisone as slowly as glaciers move. After being on it for nearly 3 years, two weeks ago I was finally down to .5mg every other day. One week ago, I quit.
Counts on NPlate and prednisone have continued to be too high, but doc and I have tolerated that in the interest of getting off prednisone first, then adjusting the NPlate. Doing both things at once inevitably ended up in a single-digit crash.

Two weeks ago, count was 584. This week, 603. So the NPlate dose was reduced from 8 mcg/kg to 6. I'm aware that label directions say to skip a shot with counts like those, but doing so would very likely cause a crash. So... We'll see how it goes this way.

I feel physically awful; everything hurts. And my mood is uncharacteristically low.
Is this what steroid withdrawal is like? I don't want to lay blame on that if it could be something else.

Sounds exactly like steroid withdrawal to me. I always feel like that when trying to taper

Janet,

If the withdrawal symptoms persist, you might ask about being tested for adrenal insufficiency, or at least having your blood cortisol checked. Not only can the long term effects of steroids cause adrenal insufficiency, but adrenal insufficiency can also be caused by an autoimmunity, and as we know, autoimmunities can run in multiples.

Very low dosage of prednisone causes very little harm, if any. Elevated platelets can be very dangerous. I would prioritize getting your platelet counts down to a safe level, over getting completely off of prednisone.

Rob16 wrote: I would prioritize getting your platelet counts down to a safe level...

That's what we're working on. The huge problem I've had is that any changes except the most minute cause wild fluctuations in count. We have to proceed gradually, or I'll end up from 600 this week to 2 next week. Seriously. I might anyway, after decreasing by 2 mcg/kg. I've been called "hypersensitive" to meds by two different doctors. Makes it very hard to titrate.

The pred is out of the picture now. All that's left is to find the right dose of NPlate.

Meantime, I'm taking fish oil every night and don't hesitate to take as much NSAID as I need for all this pain. Trying to 'unstick' the platelets as much as possible until we can get them down.

Janet:

I'm shocked that you tapered so slowly, then went from 5 to 0. The end is the most crucial part, especially when you get under 7.5. Yes, you will feel awful and it could take weeks or a few months. Going down 1 mg at a time would have been safer for the adrenals. If it gets too bad, you could always start back up at 4 mg's every other day for a few weeks, then do to 3 and so on. Don't feel that you have to tough it out; it's more a matter of safety. I've been trying to taper too, alternating 15 mg's and 12.5 and it's been awful. I really feel it. I need to get some 1 mg's. For some reason though, i broke out in hives so I have had to raise the dose the past few days. Can't win!

I hope your counts settle down soon.

Not 5. You missed the decimal point. I was at .5 mg (point 5 = 1/2) and 0 on alternate days. Can't go too much slower than that.

One mg tablets can help tailor the smaller doses. They have a split line on them, if you didn't know.
Hives are the pits! Feel better soon.

Oh thank goodness! No, I didn't see the decimal. Bad eyes. Yep, that's as slow as you could go! I'm so glad that you're off of it, finally.

Updating ... 10/9/16

I'm still off prednisone. I'd have to think long and hard about ever taking any more of it. I recently developed significant hip pain and had an MRI. I was really frightened, but thankfully, it's not AVN.

My counts are still too high with NPlate. My highest dose was 8, with prednisone. After the pred, we began lowering the NPlate dose. Now I'm at 4.7. Count last week was 186. Three weeks ago it hit 55... Perfecto, one would think! What did doc do? He raised the dose again, because he assumed it would continue to fall without a dose adjustment. UGHHH

I think my main problem isn't the NPlate's hyper-effectiveness. It's that my MD freaks at the first count dip and raises the dose again. Next visit, I'm planning to have a talk about that. It just seems wrong that he's worrying more about it than I am.

I find that quite worrying seeing as the recommended target platelet count is 50

Janet:

I agree. Changing the dose all the time just chases the counts around. It will never cause a stable count. I'd definitely have that talk with him.

Oh yes. It's #1 on the to-do list.

I'll be letting him know that I don't want to increase the dose again. I only want to either hold it or lower by tiny increments of 10 mcgs or so, given my history of problems with large adjustments.

You also might communicate to your doctor that you are just as concerned with high counts as with low counts. Thrombosis can be devastating.

Btw, I always use a leading zero for decimals smaller than one, such as 0.5, as it helps to avoid confusion.

Back again. Nothing bad has changed, and nothing good has happened. Yesterday's count was 5.

In the nine weeks since the first of 2017, counts have ranged between 471 and 5, all at doses within just 0.4 mcg/k of each other. Three consecutive weeks produced counts from 471 to 110 to 17 without any change in dose.
Before 1/1/17, I hadn't had a dangerously low count since Feb. of 2016, although I had plenty of dangerously high ones during that year.
The pattern from 2016 seems to have changed to one even more volatile, and is even less stable than at any time within my 2 years of NPlate therapy.

I can no longer blame my MD for changing doses to chase counts; I wouldn't know what to do with me, either.

The ITP specialist I saw at the teaching hospital here told me that Promacta has a higher propensity for clotting events than NPlate. That's one reason I haven't yet considered switching to that. But then... He is the same MD who told me I could be "cured" by a splenectomy, even at age 65+. It's hard to trust an 'expert' like him.

Any suggestions for disgusted me?

Janet,

Others who have required large doses of Nplate and/or have had wildly fluctuating counts have had success with combination therapy -- combining a TPO-RA like Nplate with an immunosuppressant like cyclosporine. The combination reduces the dosage needed for either drug alone. One might think "more drugs = more risks", but the dose of each is lower, and this might even even reduce the combined risk of the drugs, not to mention the risk of thrombosis that comes with wildly fluctuating platelet counts. For example, drbean7218 achieved fairly consistent counts in the 150 range (a little high for my taste, but within the guidelines) on just 25 mg Promacta and 50 mg cyclosporine. Much higher doses of cyclosporine plus prednisone were unable to achieve good results, and Promacta alone did not do the job.

For me, a good analogy for combination therapy is the idea of a "buffer" from high school chemistry. The pH of pure water is 7.0, but if you add a small amount of an acid, the pH will drop substantially. In contrast, if you combine acids and bases together with water, in the right proportion to balance the pH at a neutral 7.0, then adding more acid to the mixture has a much smaller effect. The mixture is then called "buffered", because the pH is stabilized to a narrower range.

Wow Janet - you are sure an anomaly. I'm sorry to hear that things are not getting any better.