May I please be someone else for just a while?

I don't mean that, I really am spectacularly happy, but dammit to heck anyway. If the recent past is any indication Promacta no longer works for me. I've talked doc into giving me another month to see if things improve but I have to admit I'm losing hope- and wondering if Nplate will even work this time. Dammit. Pardon my language- seriously, I don't mean to offend and that's why I'm not typing MUCH worse, I am so tired of this. I'll put counts and all below, but it did some bouncing anyway- but usually because of some illness or something. Even when I did the Nplate originally it bounced a bit.

The thing is though, I just really, REALLY don't want to have to go back to a weekly shot largely because of the damned "live by the count" mentality that goes with it. At least with the pill I was only getting my numbers run monthly and I could forget about it in between. I feel like screaming "I know I have ITP- it's not like I could ever forget- but honestly I just don't want to know. I'm doing every reasonable thing that can be done, either it's working or it's not working so can we just GIVE IT A REST please?!" ARGH. Argh. I am not a happy camper in the moment. My count was 2 today and my sinuses are full and my head hurts and I really hate this a lot. OPM. (Oh, poor me. I say that when I'm having a pity party.) Thanks for letting me cry here- since I can't really cry because it might cause another brain bleed. This is so unfair. Fairness is so random. OPM.

Here are my counts, first are the recent Promacta counts followed by the counts before that when I was on Nplate.

Date Count
7/22/10 120- my last day on Nplate, starting Promacta in the morning
7/29/10 250
8/5/10 107
8/9/10 7
8/12/10 9
8/19/10 4
8/24/10 42
8/26/10 154
9/2/10 164
9/9/10 12
9/16/10 20
9/22/10 152
10/3/10 24
10/20/10 129
10/25/10 152
10/28/10 107
11/23/10 8
12/7/10 9
12/20/10 2

This is what Nplate did, leading up to the switch to Promacta-
Date Count Dose
4/9/09 19 360
4/16/09 135 360
4/23/09 844 0
4/30/09 536 0
5/12/09 6 270
5/19/09 172 270
5/26/09 886 0
6/2/09 403 0
6/5/09 70 200
6/12/09 28 250
6/22/09 634 0
6/25/09 510
6/30/09 171 200
7/7/09 46 200
7/14/09 403 0
7/23/09 184 150
7/31/09 96 150
8/10/09 417 0
8/20/09 10 150
9/2/09 143 150
9/10/09 208 150
9/21/09 246 150
10/1/09 180 150
10/9/09 120 150
10/19/09 121 150
10/29/09 217 150
11/9/09 306 150
11/19/09 192 150
11/30/09 307 150
12/10/09 274 150
12/23/09 18 150
12/31/09 225 150
1/6/10 7
1/8/10 29 150
1/18/10 196 150
1/28/10 125 120
2/4/10 33 150
2/11/10 93 150
2/22/10 7 150
3/4/10 6 180
3/15/10 140 150
3/22/10 50 180
3/25/10 95
4/1/10 40 180
4/12/10 98 180
4/23/10 107 180
5/3/10 266 180
5/13/10 262 180
5/19/10 10 180
5/28/10 3 180
6/4/10 181 180
6/11/10 5 200
6/15/10 3
6/18/10 31 250
6/24/10 19 250
7/1/10 109 250
7/8/10 116 250
7/15/10 36 250
7/22/10 120 250

Anyway the numbers aren't the point. Poor, poor pitiful me is the point- ha!

(((((((((((((((((Lib)))))))))))))))))))

OPY.

*another* brain bleed? OMG. OPY.

((((((((((((((((Lib)))))))))))))))))))

Too new to all of this to have anything else to add.

Oh Dotty, thanks for the hugs. Yeah, "another". I had one brain bleed... 3 or so years ago? Four? Whenever the Virginia Tech shootings happened, that weekend. It was not the event it sounds like, I only bled into the space between brain and skull so it didn't cause what you'd think of as brain damage- just a really horrific headache that lasted way too long, and a warning that it probably wasn't my first and likely would not be my last. All that was before I began treating with the thrombopoietins (study drugs and then Nplate and Promacta), as I've had ITP for 20+ years and had previously tried pretty well everything with nothing helping. I lived with a single digit count for most of 20 years, until the bleed, and then got on the study meds which finally seemed to work for me if somewhat erratically. When Nplate came out I went on that, and when I found a grant to help pay for the Promacta I switched to that for the convenience of a daily pill and monthly CBC over a weekly shot and CBC.

I hate the emotional rollercoaster far more than I can even explain- like I said, I'm doing everything I can. Except living in fear. I have always refused to live in fear, which is why when treatments have failed I've stopped monitoring. I just want to live like everybody else- if I have to do so with a jillion bruises, so be it, I can handle that but I resent like hell the way ITP invades my life by demanding I pay attention to it when I'm doing everything I can. It's not listening! Dang it! O, PPM. :laugh:

Dear Libby,

After 4 years of being on Promacta, I understand how you feel about the emotional rollercoster that comes with actual rollercoster of unstable counts.

Looking at your counts whilst on both Promacta and N-plate, would it be correct to say that you seem to have several weeks of high/normal counts and several weeks of low counts which seem to cycle constantly.

Currently you have a low count which has been the case for the past month or so. Therefore is it not likely that your count will steadily begin to rise soon, as it has done in the past? What dose are you on at the moment? I would imagine it would be 75mg.

I am glad that you have managed to persuade your Dr to give it another month, before a decision is made to stop treatment with Promacta.

This is a great place to cry, and I am happy to offer my shoulder to you when needed


Hang in there Libby.

Libby,

Hang in there girl! And please don't cry! I know how bad you want to! Been there, done that! Whenever I get sad and confused I try and remember all the wonderful things, people, experiences, etc in my life that I've had. I know it's hard to do, especially when this crap just weighs and weighs on your mind, but you have so much to be happy about! A new marriage, fitting into a size 8 dress (that's celebration in itself...for me at least!), your loving husband, and your wonderful family. Don't let ITP ruin your life or rule your life. Have you considered other options besides Promacta and N-plate? I'm not too familiar with your ITP story, so forgive me if you've already explained it! What about Rituxan? So far, I've been a Rituxan success story, so that can always be an option (if you haven't already had it or considered it!) In the mean time, enjoy your first Christmas with your husband and cherish all the time you get to spend together! Don't let this *shit* (your cursing doesn't offend me in the least, trust me) ruin your holidays! God bless,
Love,
Natalie

Love you both! Snowgoose (can I say... it's "Lib", not "Libby")- you've nailed it exactly. Why is it that you see the pattern and I see the pattern but when I say to the doc "My counts seem to cycle, down about every third week but always rebounding" she says "I haven't seen that"? I printed out a graph- it drops and peaks, in regular cycles. How can anyone not see that? Anyway, I digress.

Yes, that's what it's always done but with this sustained drop (and yep, I'm at 75mg) I'm doubting it's going to rebound- but I'm also trying to remind myself that I just planned and executed a wedding in five weeks time, just two weeks after returning from four weeks in China. It may have been happy stress but it's still been a VERY stressful time and that's the most reliable platelet killer in my body's arsenal. So I think giving it another month is reasonable even though I'm not doing too good at keeping optimistic about it. And why I'm afraid that my body may have figured out the thrombopoietins, and Nplate may do no better now.

Natalie- HA!!! I'm not back in a size 8 honey, my old size 8 had lots of spandex and I just poured my size 14 body into it anyway- and it worked!! THAT'S the celebration- I'm still a fat old lady, and happy to be so! What a lovely way to misunderstand though, sure brought a big smile to my face!

As to my ITP story, I was dx over 20 years ago and have tried it all. Literally. And none of it has worked for more than the briefest time, if at all. The only things that have worked at all are prednisone at doses above 125mg. daily, which I can't sustain of course, and wouldn't if I could, and for the first three times I tried IVIG it gave me a rise for a few days but no more than that, and the last two times I tried it I got no response at all. No response to Rituxin, none to Danazol or Cytoxan or to... I forget what else. I haven't done WinRho (no spleen) and while I know it has on occassion worked for the spleenless, given the abyssmal failure of everything else that works similarly I hold no hope it would work for me, and I'm almost certain my insurance won't pay for it since I am spleenless and the mfgr. says it's not for us. For about 18 years I simply didn't treat, didn't bother going to the doc, and kept a count of below 5K with nothing more than bruises. Or so I thought, when the brain bleed hit the neurologist said he thought it wasn't my first, but nothing ever happened that scared me so I'd have so say I've really done fine, except every once in awhile when it just refuses to allow me to ignore it. Normally my attitude is really good and I just chug along living life, I'm just having a bad spell right now. It'll pass, this I know. Thank you so much for your support, it means so much to be able to come here and throw my little pity party and know people understand. I've come and gone off this board since long, long before the PDSA was officially founded and it's always been a site of hope and encouragement.

hi Lib

This is just a probably completely irrelevant possibility, but here goes anyway.

When I mentioned to my son's consultant that his count seemed to have cycles of up and down, he asked whether it was on a three week cycle. I asked why, and (I think) he said it was something to do with a condition which meant the platelet producing cells in the bone marrow all died off at once rather than continuously throughout the period. He mentioned that this would be something he had suffered from all his life (hereditary), and it would just be more noticable in its effects since he had got ITP as well. I didn't follow it up, because I thought my son's cycles were more like 4 weekly (and since then, his count has been stable but low!). However, if it is true for you, it could maybe explain why the thrombopoietins sometimes don't work?

Alison

Alison I'm fascinated, I want to know more. Any recollection of what the condition might be called or anything?

Lib

Ha, unfortunately me and my son's consultant talk two different languages (I speak english and he speaks something I call medicalese), so our conversations tend to be quite brief!!!

All I really remember is that it was something to do with the lifespan of whatever cells produce platelets, and them all being replaced at once rather than gradually. Dougie USED to have a distinct pattern to his count where it would start high (up to about 100 at one stage) and then gradually drop over the next few weeks until the fourth week when he would start to get symptoms again and his count would drop to the 10-20 range, and then it would bounce back up again without any treatment. Over time the bounces got less extreme, but the pattern was really noticeable for about 10 months - since then he has sat at a pretty constant 30-40K which I think is easier to deal with. I am not understanding how your doctor can't see a pattern in your count cos it seems quite clear to me!

Alison

It's certainly something I'll bring up with her again- or I will if the pattern re-emerges, with them staying low all the time it's sort of irrelevent what it used to do. My optimism has officially flagged.

It sounds like something different from cyclical ITP? I found this but it doesn't quite fit:
www.bloodreviews.com/article/S0268-960X(04)00030-X/abstract
www.gundluth.org/upload/docs/Archived/Thrombocytopenia.pdf

Alison's theory is very interesting! Wouldn't that be something if it was a big missing piece of your puzzle?

Hope you rebound soon Lib - Erica

I can't get either link to load. I'd love to find a reason for the apparent pattern though- every piece of the puzzle helps, even if it takes a while to figure out how they all fit together.

This is the first one:
Idiopathic cyclic thrombocytopenia

Ronald S. Go


published online 19 August 2004.

Abstract
Cyclic thrombocytopenia (CTP) is an uncommon disorder characterized by periodic fluctuations in platelet counts, typically resulting in episodes of thrombocytopenia alternating with normal platelet counts. While some CTP cases are associated with a primary hematologic disease, most are idiopathic. Patients with CTP are frequently misdiagnosed as idiopathic thrombocytopenic purpura (ITP) because CTP has clinical features very similar to ITP. When evaluating patients with suspected ITP, CTP should always be included in the differential diagnoses because CTP generally does not respond to standard ITP treatments, including corticosteroids, splenectomy, and intravenous immunoglobulin. Two clinical features relatively unique to CTP besides periodic thrombocytopenia are rebound thrombocytosis unrelated to recent splenectomy and platelet nadirs occurring during menses. When a diagnosis of CTP is made, patients must be offered a period of observation, as many may not require treatment. If treatment is clinically indicated, the literature suggests that hormonal therapy provides the best response.

Keywords: Idiopathic cyclic



This is the second one:

Cyclic Thrombocytopenia: An Important but Oftenneglected
Differential Diagnosis in Patients with
Suspected Idiopathic Immune Thrombocytopenia
ABSTRACT
Cyclic thrombocytopenia (CT) is an uncommon disorder characterized by periodic oscillations of
platelet counts manifesting as thrombocytopenia of variable severity. In most cases, it follows
a benign course and no treatment is required. Because of similar clinical presentation as
idiopathic thrombocytopenic purpura (ITP), CT is frequently misdiagnosed as ITP and treated
unnecessarily. We describe 2 patients with CT, one who was treated as ITP and developed
several therapy-related complications and the other who was observed for a long period of
time without developing significant bleeding complications. Besides periodic episodes of
thrombocytopenia, we observed that thrombocytopenia occurring during menstrual periods
and episodes of alternating thrombocytopenia and thrombocytosis were present in our patients
and are distinct clinical findings that may be helpful to distinguish CT from ITP. We suggest that
CT may be an underrecognized disorder and should be routinely considered in the differential
diagnosis of ITP.

And that's probably the only article you'll find. I did research for someone - darn, can't remember, who has cyclic ITP and neither of us could find anything. One or two blurbs.

Here's a prior discussion:

discuss.pdsa.org/topic.asp?ARCHIVE=true&TOPIC_ID=20269&SearchTerms=cyclic

He treated with platelet transfusions once a month. I always just wondered if that caused Post Transfusion Purpura and the cycle went on.

Hmmm. Given that without treatment my count has stayed in the single digits for years, I'm not sure this is really me. It's only cyclic on those rare occassions when some treatment works for awhile- which so far none of them have done for all that long. I'll certainly mention it to my doc though, thanks for the info.

Anybody ever heard of a Philips INRatio monitor? It's for testing your prothrombin time. Am I correct in thinking that's not necessarily related to platelets? I have an aunt who says "It checks your platelets, I use it, you should get one" and I'm trying to confirm that her intentions might be good but she's mistaken. Or if she's not, then I want one!

Aha! I found out who it is.

discuss.pdsa.org/topic.asp?ARCHIVE=true&TOPIC_ID=21720&SearchTerms=cyclic

I wouldn't think it measures platelets. It just measures clotting time.

www.hemosense.com/patient/inratio.shtml


The International Normalized Ratio (INR) is used to monitor the effectiveness of blood thinning drugs such as warfarin (Coumadin). These anti-coagulant drugs help inhibit the formation of blood clots. They are prescribed on a long-term basis to patients who have experienced recurrent inappropriate blood clotting. This includes those who have had heart attacks, strokes, and deep vein thrombosis (DVT). Anti-coagulant therapy may also be given as a preventative measure in patients who have artificial heart valves and on a short-term basis to patients who have had surgeries, such as knee replacements. The anti-coagulant drugs must be carefully monitored to maintain a balance between preventing clots and causing excessive bleeding.


When is it ordered?
If you are taking an anti-coagulant drug, your doctor will check your PT/INR regularly to make sure that your prescription is working properly and that your PT/INR is appropriately prolonged. There is no set frequency for doing the test. Your doctor will order them often enough to make sure that the drug is producing the desired effect - that it is increasing your clotting time to a therapeutic level without causing excessive bleeding or bruising.

The PT may be ordered when a patient who is not taking anti-coagulant drugs has signs or symptoms of a bleeding disorder, which can range from nosebleeds, bleeding gums, bruising, heavy menstrual periods, blood in the stool and/or urine to arthritic-type symptoms (damage from bleeding into joints), loss of vision, and chronic anemia.

Sometimes the PT may be ordered when a patient is to undergo an invasive medical procedure, such as surgery, to ensure normal clotting ability.

www.labtestsonline.org/understanding/analytes/pt/test.html