Ready to quit

This whole thing is one big exercise in futility, and I'm beginning to question the point of it all.

To recap, I was taking prednisone for about 1 1/2 years when it began allowing too frequent dips to single digits. I was forced to try something else and started NPlate with the intention of eventually getting off prednisone. That was 9 months ago, and I'm still on both drugs.

Here's the really frustrating part: I've never had any of the stability I expected since starting NPlate. In the shorter term - the past 2 months - my counts have ranged everywhere between 502 and 2 (twice!)
My past four weekly counts were 135, 2, 235, and 105. NPlate dose has been constant. Only the pred dose has been changed. The plunge from 135 to 2 happened when pred was reduced from 7.5/day to 6.25. How could such a miniscule reduction in dose account for such a wild change in count?

Seriously, I may as well get off the NPlate at this point, because the two drugs are causing as much instability as the pred alone. Why waste the money?

My MD has never had such a case as mine.
If you were me, what would you want your MD to do differently?

Janet:

Gosh. I can usually see where a problem might exist, but I cannot figure you out at all. The N-Plate dose has been consistent? Like you, I don't see how that small of a Prednisone dose reduction could have caused a drop like that. Other than those two drops to 2k, how have your counts been all of the other times?

Are you able to try Promacta? It might give you more stability.

Other than that, I don't have any suggestions. Hopefully someone else will.

I think trying Promacta is a good suggestion, as Sandi mentioned.

That said, I was on Nplate and pred and I totally believe what you're saying! the tapering is causing the drop in counts. Tapering the prednisone even the tiniest bit(.5mg) affected my Nplate counts, not that wildly but they did drop. Then the next week they came back up-- so for me it was a temporary drop.

Since you asked: I'd say if you want to stay on Nplate, I would keep the dose consistent and just focus on tapering the prednisone. Get a big bottle of 1mg tablets and taper by .5mg every other day- 7.5 then 7mg for a week. Then sit at the new pred dose for a week(5days) to let your body adjust. then do the every other day again at .5mg lower for a week.

I know it sounds crazy! hah and don't know if it would work for you. It did work for me. good luck with whatever you do. And thanks for keeping us posted, I was wondering how you were doing.

Janet you said MD - do you see an MD or a hematologist?

Gosh indeed Sandi..If my counts were swinging like that I 'd be inclined to come off the lot and see what happens..So glad I'm in the UK where (at the moment) we have standard prescription charges

I had problems like that on Nplate but rather than stop the Nplate I stopped the pred so that I could see exactly what the Nplate was doing and eventually got stable and then got into remission. Actually I stopped the pred far sooner than the doctors think because I just did it myself and then refused to start again when my counts dropped to 1 and just rode it out.

My NPlate experience is much the same as Ann's. About halfway through my 5 month NPlate treatment I had tapered off Prednisone and for the remaining time would just have a 2mcg/kg injection when I dropped below 200. This would then last me about 5 weeks without injections as I did a 150-400-600-400-250-150 cycle until I suddenly went into remission at 200+ some 8 months ago now.

Sandi, my weekly counts have been:

March: 127, 193, 212, 176, 106

April: 240, [wk. skipped], 502, 2

May: 278, 339, 109, 53
NPlate had been 3 mcg/kg from early December until this 53 count, when it was increased to 4.

June: 135, 2, 235, 105

During all this time, we were attempting to taper off the pred, never decreasing by more than 2.5 a day over the course of 2 weeks at a time. It would be okay for a while, then "boom". Crash.

Posey, your idea to try decreasing by .5 at a time seems sound. Doc says he's never seen anyone as sensitive to dose changes as me. He should be receptive to the plan.

Two reasons I'd like to avoid Promacta:
Insurance covers my NPlate 100%. Promacta would not be, and I probably can't afford the co-pay.
Secondly, the university ITP specialist I saw said Promacta is associated with more clotting events than NPlate has shown. Whether he's right or wrong, I'm already at enough clot risk as it is and don't want to increase it by even a bit.

Melinda, he's a hema/onc, board-certified in internal med and oncology.

Other than the two major drops, your counts haven't been too bad. A bit too high, but I think you need to get off of Prednisone first and then try to attain more stability.

Did you drop your Prednisone dose when you crashed to 2k both times? That is really odd.

Oh good Janet - he's a hematologist.

It is interesting that in April your count was 240 so a week of NPlate was skipped and then w/a week off NPlate your count went up to 502.

I was diagnosed and treated long before NPlate etc but when I did finally get off prednisone I decreased it by .5 each time, loved those 1mg tablets. My hematologist wanted me to just stop it since I was on a low dose but I tapered by .5 myself, can't remember now how I did it.

Regarding university ITP specialists - I had the head of the dept tell me "you WILL have your spleen removed", that was about 25 years ago and the spleen is still where it was when I was born.

Sandi, I think I wrote here about that 'off' week but can't find the post.
The office closed for a vacation week. They should have arranged for my shot somewhere else; but since the count that week was good, he must have decided it was okay to skip a shot. I knew better, but wasn't insistent enough. One week later, I was at 502, so the shot was skipped (properly so, right?) The week after that, I was at 2.

The pred dose had been 5 mg for 4 weeks prior and was not changed until it was raised after the plunge. So I can't entirely fault the tapering process with that first 2 count. It was more likely the NPlate interruption, I think.

Melinda wrote: Regarding university ITP specialists - I had the head of the dept tell me "you WILL have your spleen removed", that was about 25 years ago and the spleen is still where it was when I was born.

Well, things haven't changed much. His resident assistant saw me first, to take the history. He talked as if that was my very best option and would cure me. I thought, "Okay, sonny. Your boss and I will be the judge of that." LOL
Then Dr. Big Name came in and also said that should be my next step. It would cure me. Big waste of time going there.

Looks like I'll be asking about your and Posey's suggestion regarding .5 mg increments next OV.
Doc said a few months ago that he's never seen anyone as sensitive to miniscule dose changes as me. I thought that was ironic, considering how I've always considered people who say how 'sensitive' they are to meds to be sorta nutty. I now know it can be truer than I'd ever imagined.

Janet,

Yes you should not have received a dose at 502. The NPlate literature says that no dose should be given if you are above 400. I was at 396 once and we elected to dose which ended up being a mistake as I shot to 1,084 but thankfully I did not have any problems and promptly lost 700 the next week back to the high 300's.

Looking at your results, I assume you receive a dose at 106 which took you to 240 and then another dose at 240. It would have been interesting to have known your count in the week that was skipped to then see if it rose again without a dose up to 502.

This was the experience that I had with the full impact of a dose coming in 2 weeks after it was given.

Why you would then have such a drop from 502 down to 2 is a mystery.

Janet- I really agree with everyone that you can find some kind of stability once you taper off the prednisone. hang in there! I have been off prednisone for 3 months. Since last year I've lost 17 lbs, my hair has gotten thicker. Had to do a super-slow taper because I was having pain and fatigue. I took it a long time and I'm still tired sometimes, but great to be off of it!

Every doctor I've gone to suggests splenectomy- my favorite hemos and my least favorite, they've all agreed about that one thing.

Robert- that is such good information about how an Nplate dose reaches its peak in 2 weeks for you. I've read that before in one of your posts and it explained everything to me! Plus Ann mentioned how the doses will build on each other to get those super-high numbers. That makes so much sense.

My hemo has said hes never seen anyone like me because my Nplate numbers are so rock solid- Ive never had wild fluctuations at all. I believe its because I respond to Nplate pretty quickly. When I first started taking it my counts rose in about 3 days. Then it stops working and my counts drop on about day 9. So it doesn't stay with me long. My dose peaks on about day 6-8 I think.

Here are my numbers on 3mcg. Nplate- 47K 43K 43K 42K 42K (missed a week) 10K 26K 59K 34K 55K 54K 43K 39K 42K 40K

Then I stopped prednisone completely after a super slow taper-(4 months going from 2mg to zero.) and my numbers dropped, though still (freaky) consistent- 21K 22K 22K 20K 29K 21K 22K

It makes no sense that prednisone would affect my counts at doses of .5mg -1mg because when I take 7.5mg pred by itself it hardly does anything, my counts are way low, below 10K. It seems to be the combination of Nplate and pred? don't know.

My personal thought is that the body can be sensitive to small Prednisone drops, as in withdrawal. But I'm not a big believer that platelet response is that sensitive. So technically Janet, your counts took a dive once after a drop in dose? I'd need to see that occur several times to know that it was Prednisone for sure. Not that I don't believe you, I'm just a huge skeptic until I see more solid info. I admit that I could be wrong...I've been wrong before!

On another note, I am one of those nutty people who has reactions to meds, so I do get that part. If it can happen, it will happen to me. I think that people with autoimmune disorders can be especially sensitive to medication side effects. I also believe that the wrong adverse side effect can trigger other things.

My internet was down for a couple of days, so I couldn't comment till now.

The last dip wasn't related to any change in NPlate dose, but followed a 1.25 mg pred reduction. Whether it was a real effect or just a fluke, I still think it's reasonable to get a supply of 1 mg tablets and try going at a withdrawal more gradually than I've been.

Thanks for all the input. It's much appreciated.

Going down by 1 mg. is never a bad idea, so it certainly couldn't hurt. I have tried going down by 1 mg. every six weeks (not for ITP though).

go down on the steroids as gently as possible is my advice

As mentioned - I went down by .5mg - that's because mentally I was tied to the prednisone and scared/worried that if I tapered by more the old count would drop.

Count was 84 yesterday, down from 105 last week without any change in meds.
Was given the same dose of NPlate and told not to change the pred dose.

I asked doc if he had a theory for why I bounce around so much. He replied, "It's just your particular version of ITP."
I replied, "I guess I'm lucky then. At least I'm not refractory to everything."

That simple, short conversation changed my attitude, at least for this week. My plan is to revisit it whenever the frustration inevitably creeps back around.

All you can do is take things week by week, Janet. Today is good!

There have been others that have jumped around like that. You just have to hang in there! You're doing okay.

Count of 5 today. NPlate dose increased; pred remains at 10 till next week.
Every Tuesday has become a whole new adventure in ITP.

I agree! It's not often that N-Plate does not work. I hope the dose increase makes a difference.

Janet,
How many weeks have you now been on the NPlate and what dosage level are you at?
I totally understand your comment regarding 'your Tuesday'. My day was a Wednesday with blood tests done at 7:30am, an appointment with my specialist at 11:00am to discuss my dose requirement and then to have it administered at the hospital Cancer Day Care unit.
Fortunately my office is only a 10 minute walk from the hospital and so it all quite convenient. I even told my clients that I was not available for meetings on Wednesdays due to my hospital commitments and they accepted it! Unfortunately they have now grabbed it back as thank goodness my ITP has gone.

Janet,

I feel your pain. I'm going through the same thing right now but with Promacta and Prednisone. My counts are 1,000.00 to 103,000.00. The promacta has been increased now to 50 mg. I took it 5 years ago at 25 mg only 8 doses and my count went into the millions and I came off of it and stayed in remission. This time...I feel like what the heck! I can't get stable..at all. I have bleeding I have never experienced in my 21 years of fighting this..had to have a platelet transfusion which I think is pointless but I was bleeding two bags of IV steriods, 40 mg of prednisone and 50 mg of promacta just got my labs done this morning I'm at 19,000. Really?! I don't understand it...I'm ready to file for disability and just pray for a miracle at this point.

Maybe try a gluten free diet....I feel fat from the water retention too..which is not helping my attitude. Here's to us...and lot's of platelets in our future and less drugs!

Nice to meet you DJM. Welcome to the board.
In a weird way, it's comforting to know someone with reactions as wonky as mine!
Bad as it is, it would still be worse to have no response at all, agreed?

Last week's count, 5.
Today's count, 383.
Uh-huh.

Robert, sorry I missed your follow up question. I've taken NPlate since the first week of October. Last week and today, I got a dose somewhere between 4 and 5 mcg/kg. That's because they didn't have the full 5 mcg dose on hand last week, so I took what they had instead of having to go back again the next day. Doesn't seem to matter what dose they give, because I've never had any form of logical response to increases or decreases.

And so it goes.

Geez, Janet. Makes no sense. Maybe you should contact one of the experts somehow?

Which experts do you mean?

Any of the doctors who have had papers published about the TPO's. There are quite a few. I don't know how open they would be to answering questions from a non-patient, but some people here have tried that with success.

Oh wow... I never would've thought of that.
Thanks for the tip!

Janet, I thought of you when I read today's post from Yogesh, whose wife's platelets were fluctuating wildly after Rituxan, and while taking Promacta. Her doctor added Dapsone, then tapered out the Promacta, and her counts have remained at a very good level for over 1-1/2 years. I know Dapsone is controversial around here - it must be used cautiously! - but it has a decent success rate, even when other treatments don't work.