ITP Rollercoaster for last 3 Months

Hi all,

This march I got diagnosed with ITP (again, had it in 2013 already but then responded well to cortison and it went away). I did respond to cortison therapy but my platelets droped again to single digits (I believe in the US you would call it a few thousands) while still on cortison. So we first changed to Revolade (Eltrombopag) which I alternately responded too well or not well enough for a few weeks until stopping to respond at all two weeks ago. Since then we changed to Nplate (Romiplostium) which again I first responded well but now noticed again petechia. My usual low platlets symptoms are bruises, petechia, fatigue, strong menstruation and blood vesicles in the mouth (sorry for the word to word translation from german, don't know the native english word). So the up and downs of hope together with the once to twice a week doctors appointments are quite heavy on my energy and mood.

I was wondering if there is somebody around with a similar journey. I know how much it helped me to talk to other autistic people when I got that diagnosis so trying to get the same benefit here.

Cheers,
Franziska

PS: I am 31 and from Switzerland.

Sorry, don't have experience with TPO agonist drugs. I'm certainly used to platelets being hard to control, though. I know what you mean when you say "worked too good, then not good enough". My "drug" has acted like it was letting me down, but then I figured out it was me not taking it correctly. 

Basically, I take the test only every couple of weeks when the platelets are high, but its not really often enough, if you look at my trends. You can drop from high to low in 2 weeks, even with some drugs, if its not enough of the right "drug". And there must be some hidden factors, such as infection that make your body require more. Maybe even seasonal allergies? If you require more than what you're taking, your platelets are going to drop. Its a very sensitive thing, apparently when using TPO agonist type drugs, too, if you're any indication.

My doctor sees my fluctuations, but doesn't suggest I take the blood test more often (when the platelets are high). It's almost like he wants them to go low. I don't feel its life or death, but its not the quickest way to really really figure things out. I do understand if its just trying to keep insurance happy. It takes months, or maybe its so sensitive and having other factors, that you never really get it figured out. Those unknowns will always be the wildcard, maybe. 

One way or another, you're dealing with the unknown, and that is frustrating and a bit scary to think your options are dwindling. Like you say your hopes are dwindling when you see the surprises. I mean the disorder is not always difficult, but it is at times. Maybe it will get easy around the corner, or maybe it won't. 

I've been at it for 10 months. I've figured out some things, as long as a curve ball isn't suddenly coming at me, but its still pretty full of surprises when trying to keep steady. That's the hardest part. Getting the platelets up is easy (for me), but I don't look forward to the times when I have to get them up. Fatigue and frustration are always in the mix at those times. 

I would like to get the steady part right, partly because when the doctor wants me to get the platelets up, I feel pressure to get them up fast, since I'm not using his drugs. So I use far more "drugs" to get them up, than to keep the platelets steady, and I don't want to take more than I have to. Of course, I really don't want the platelets to hang around on the low end myself, either, so I have to take the bull by the horns, at that point. Its an interesting dynamic, for sure;  platelets, real drugs, my "drugs", physician, blood tests...

All to hit that nice sweet spot in normal range, which, with TPO agonist drugs is not something you're necessarily shooting for the middle of, are you? Isn't NPlate supposed to be shooting for 50? I can tell you with my "drug", it would really be  hard to stay around 50. I don't think I could do it. Mine is too reactive. 50 is not a natural number for my platelets on my "drug".

Thanks for your reply Itpjourney. 

For me my platelets can drop from high to low within a day even with prednisolon or dexamethason. Fortunately I am very good at predicting my platelet level by observing my body. So I know exactly when I need additional blood tests to my currently usual weekly ones.

I am sorry to hear that you seem to have a doctor that doesn't take your concerns ceriously enough.

Which "drugs" do you use?

Currently with TPO we try to reach the range of 50-200 platlets. In an hour I will know if we continue trying TPO or need to change therapy yet again.

This forum seems quiet. There are many subtopics with no new messages in years. Does anybody know of other exchange platforms that are more active? Unfortunately I don't have facebook though maybe this will finally be the thing that gets me to create an account.

Well, since you're wondering about what's next, my super-reactive (for me anyway) "drug"  (supplement, sounds weaker than it is) is papaya leaf extract.

Oh yes,  now I see that Nplate shoots for 50 to 200. Good to know. And I see eltrombopag has the exact same rules for platelet range. My "drug", at this point anyway, does not have such rules. I'll take that as a plus. Although some will say that papaya leaf extract is too "unknown" to have  such rules. My "drug" has only shown numbers between 50 and 200 maybe only 2 times. I mean I remember 77, 168 and 202. It seems to like my number between 350 and 477, but who knows if that's higher than it should be. I know I'd rather keep it in range.

I didn't know that you could drop from high to low in one day.

Yes, facebook is a place I stay away from, so far, too.

So we are continuing to try Nplate with higher dose and in addition a bit of prednisolon (cortison). Currently I have all my signs of low platelets plus the sideeffects of issues with sleeping and headache. 
As far as I understand we aim for below 200 platelets because the risk of thrombosis gets too high otherwise. 

Makes sense to stay with it. Once you leave it, you may not want to go back.Official Nplate site lists a lot of common symptoms. Headache is number one and trouble sleeping is number 4.

There is no perfect treatment, in general. I can't really get past the cost to someone myself, yet, anyway. I haven't exhausted my choices,  to try something else yet. 

I stood back, though and looked at my platelet trends, and notice a switch is being thrown. Either I successfully flip the switch with lots of papaya leaf extract, and it goes up incredibly, or I try a small amount and I drop almost as fast back to the bottom. My new decision is to just take the lots of papaya leaf extract once every 2 weeks and see if it drops any quicker without the smaller doses in between.

This could in effect show a level line, with a 2 week cycle of papaya leaf extract and 2 week blood tests, but we know the roller coaster that is behind it. It seems steady dex or prednisone would smooth things out, but trying to avoid that consistent "help".

Heck of a way to live, I suppose, but that's what we get, I guess. I really wanted that ideal steady maintenance dose, but unfortunately it doesn't flip the switch. Not anymore, anyway.

Lets hope your new dose of Nplate works and eventually you take less and it still works, etc.

Yes,  these receptors, the ones that tpo receptor agonist drugs turn on, or the ones that papaya leaf extract turn on (I think they are different ones?), are switches that require a certain amount of medication to turn on. This is why the response comes and goes. Its a very sensitive system that will show a roller coaster ride. We're picky about the range, we're picky about not taking more drugs than we need to. It adds to the likely-hood of a roller coaster ride. Yippee! Be happy with the ride. It could be worse. One thing about it, it does make things interesting. And there are certain advantages of taking anti-inflammatory medications.

Hi, i'm in my mid 50s. I had several rounds of bruising and petechiae with substantial fatigue last summer which seemed to go away when we finally excluded other causes and settled on ITP. This spring i've had two rounds where i had a blood test at the onset of the petechiae. The first time i was in single digits, the second time "not detectable." Each time we responded with a short course of steroids (dexamethason) and an infusion of IVIG. I've since received a treatment with rituximab as the hematologists here think it may be more effective if it is used sooner.

I envy your confidence in observing your body to know your platelet level! So far all i can observe confidently indicates a drop to a dangerous level, and i wish i could catch it before then. I have had a lot of distressing things happen with family and pet health in the weeks since getting the rituximab: learn ing how to listen to my body and correlate with platelet counts has been hard with grief and stress weighing me down.

This forum *is* pretty inactive, and the Thrombocytopenia group on Reddit is inactive also www.reddit.com/r/Thrombocytopenia/new/ . I just checked the Facebook group, which is private but shows "10 new posts today, 244 in the last month'. I too have avoided using Facebook (although i made an account in the dark ages when one had to be invited), and i'm not sure i will start again.

Oh hey Judielanie. Really nice to hear from you. And sorry to hear of your struggles. 

I finally had some good news last week. Apparently the combination of Nplate and Prednisolon managed to get my platelets up again. Now we hope to be able to slowly reduce the Prednisolon and if it does not work might try stopping my antidepressant Paroxetin. So I am supper happy to (at least temporary) be out of Fatigue and imminent ER risk with even couple of strategies ahead to maneuver difficulties.

Though the cortison seems to interfer a bit with my early detection from body symptoms. Currently only in the positive way, I have bruises but my counts are good. Seems like that can be a side effect of cortison although it is rare for somebody as young as I with no prolonged cortison treatment beforehand.

My pets health is also fluctuating. It is amongst others a progressive illness coupled with me needing to go to the vet quite often (blood draws every two weeks). The last week was quite okay, with the excess energy from the prednisolon I could manage those additional stresses quite well. Though I did realize that my cat is on a higher dose (compared to body weith) on prednisolon than me. Explains why she is so crazy with energy sometimes too.

Am also quite proud of having now learned to give myself the subcutaneous injections from Nplate. A year ago I was quite afraid of needles but now after one year of giving subq's to my cat I can even do so to myself!

Hope my upbeat situation helps you to remember that there can be good turns right around the corner. I just try to see it as a "mini holiday" from my chronical illness where I can regain some energy for the next leg of the "adventure".

Feel free to contact me if you want to talk about your hard pet situation.