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TOPIC: New to ITP, my story attached, have questions

New to ITP, my story attached, have questions 8 years 6 months ago #10063

  • KO27
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Hi,

This is my first post, and I appreciate any input or experience anyone can offer.

For the record I am 41 years old, Male, active, 5'7". 145 lbs., father of 3 kids under 6, living in Orlando, FL.

I was diagnosed with ITP in August (2010) with a platelet count of 22, and bone marrow biopsy to exclude anything worse. I don't think I'd get out of the electric chair to have another bone marrow biopsy.

After some (rapid) research I requested Dex instead of Prednisone and my initial Hemo agreed. I did 4 days@40mg/day x 3 cycles at 2 week intervals (got that?) but my platelets elevated only as long as the Dex was in my system, then crashed. Dex also made me stupid (among other nifty things) and I considered that perhaps not having platelets wasn't so bad if this was the treatment.

Unfortunately, my next test was down to 16 and my new (much more considerate) Hemo suggested that as I was RH A+ I could try WinRho in addition the the Prednisone he immediately placed me on.

I agreed, and as we were in a bit of a hurry (I desperately did not want to be hospitalized) I didn't notice he forgot to tell me about the risks. I suppose, realistically, they are slim (1 in 1000 chance), but I turned out to be that 1. I had every symptom of a moderate hemolytic reaction, in order (back pain, shaking chills, fever, discolored urine), and went to the ER where I had to explain what WinRho was and why I thought I was having a hemolytic response. Imagine their surprise when my blood work came back looking like a Greek tragedy. I was very lucky to have dodged any long term problems, as well any terminal ones. Apparently 9 or so people in the past 5 years have not, and WinRho has been removed from the shelves in Europe. If you don't know what a hemolytic reaction is, and are considering WinRho, I would strongly recommend reading up on it. It's so awful it sounds like science fiction.

The upshot is that the WinRho, despite crushing the rest of my bloodwork, spiked my platelets for about 3 weeks, up to 246 at one point. Of course, I can never have it again.

I was taking 60 mg/day of Prednisone and tapering it 10 mg/wk (in addition to Chinese herbs, which as far as you know are not a sign of desperation :-)) because my Hemo wanted to see at what level the Prednisone would support my platelets.
Everything was fine, my platelets (at 40 mg/day Pred) were holding at 50-60. I went to bed on a Saturday night and woke up just enough on Sunday to think I had been hit by a truck in my sleep and realize my vision was off. I felt god awful and couldn't focus my eyes (20/15 vision for 41 years) on my breakfast cereal.
Monday was the same and my platelets were down to 26. My Hemo suggested the Prednisone could have altered the blood pressure in my eyes, which made about as much sense as anything else, and he explained that it 'appeared' that the Prednisone was failing to benefit my platelets.

Based on this I agreed to try IVIG on that Friday 12/4/2010 as it appeared my options were dwindling. I went loaded for bear; 2 novels, 5 magazines, a laptop and 6 pounds of food for what I imagined would be a 7 hour ordeal of some kind.

The nurse administered Benadryl prophylactically and the next thing I remembered was her saying (6 hours later), with a considerate, but oddly humorous Asian accent "Ok, treatment over. You go home now."

No headaches or any other side effects, and I felt like Superman the next day. Still do, 4 days later as I write this. Platelets were at 126 this AM.

While my platelets did come back up to 49 by the 12/3, indicating that I (as my Chinese herbalist suggested) got attacked by something over the previous weekend and that it wasn't a complete Prednisone failure, the plan is now to taper off Prednisone completely and take IVIG as often as needed until I get enough answers to make a decision about a splenectomy.

While this has been cathartic to outline, and I thank anyone for reading this far, this does bring me to the true question I have:

Is anyone, anywhere in America, doing any meaningful research on individuals in an attempt to determine why ITP happens?

Both Hemos I've seen have been aggressive about treating my symptoms, but they look at me like I'm an alien when I ask them what could possibly be causing it.

On top of this, they both want to take my spleen, which I'm having some logical problems with. Apparently there is nothing wrong with my spleen, and therefore removing it seems to be the surgical analogy of removing an arm to cure tennis elbow. I am having real trouble getting my head around this.

Of course, there also appears to be a 1 in 300 mortality risk from the surgery, and no certainty that it will work. After having a close shave with the 1 in 1000 risk of WinRho I am not at all impressed with 1 in 300.

I feel like I'm walking around in a land of lousy options and to my astonishment (and perhaps naivete) nobody is even considering what could be causing the problem.

The IVIG may give me enough time to seek more diagnostic options, and I have the means and insurance to pursue them, but is anyone (Mass. General, Johns Hopkins, Mayo?) anywhere actually doing anything individually diagnostic or is the entire pathology of this really just "you have ITP, pick your drug"?

One last question; when my platelets are below 50k, I can, with some accuracy, tell my doctor ahead of my CBC what my platelet count is within +/-5K platelets based on how fatigued I feel. My doctor tells me this is unprecedented in his experience. He says that most people never feel fatigue at all, and certainly not with any precision. Is this true? Is this atypical?

My sincere thanks for any input or insight, and if nothing else, thanks for taking the time to read this. It feels good just to get it out there.

KO
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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10064

  • tamar
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Hi KO,

Welcome to the site. I'm glad you found us. There's lots to be learned from the experience of others.

First off, sorry about your reaction to WinRho. Slight hemolysis is normal, but it sounds like yours was not slight. I had WinRho 20+ times between 2002-2007 and it was a godsend for me. Just curious, did you get a push or a drip? (push is given over 5 minute period, drip 30-60 minutes).

Secondly, I'm surprised you don't mention rituxan. Has that been offered to you as an option? If not, it's time for another opinion, as it's something that any hema familiar with ITP will at least discuss with a patient. Not saying I recommend it, but you should know it's there.

Third, when I was diagnosed in 2001 and for several years after I wanted to know what caused my ITP. I've come to the conclusion that there is no one answer, and I'd rather have researchers spending their time figuring out how to manage it one it's there. Once a perfect treatment is found, then maybe it'll become clear how to prevent it. For us the prevention is too late, so maybe this is a selfish view. ;)

I've been off treatment since early in 2008, with a count hovering plus or minus 25K from a midpoint of 110K. ITP does just "burn itself out" for some of us if we can find a way to manage it in the meantime.

There are lots of doctors who do specialize in ITP and other platelet disorders, but as far as I know none that do individualized testing. Where in the US are you? Maybe someone here can recommend a hema or clinic.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10065

  • CindyL
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Hi KO, welcome to the "family"!

It is called Idiopathic because the doctors don't know what causes it. There are a few on here who do know what caused their ITP; I'm not one of them and I gave up trying to figure it out.

As for a splenectomy, like you say, there's no guarantee that it will work. Mine didn't. I waited two years after diagnosis to have mine. I was diagnosed in 2004. I've been on prednisone since then and will finally be off it by the end of the year. One thing to remember is we are all different, what works for you might not work for me and vice versa. There are many more treatments to try before going for a splenectomy. I'm sure more folks will chime in, so read, read, and read all that you can.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10067

  • sarahw
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Hi KO,

Glad to have you on the boards! I am relatively new to this adventure (diagnosed in July) and have found this site to be extremely helpful and encouraging. There are a lot of formerly (and otherwise) very healthy people in their 20s, 30s, 40s here, all trying to wrap our heads around this condition -- in many cases concerned about the effects on their families. (I have smallish children myself, who are--thankfully--oblivious.)

It's funny that you are in Orlando because the American College of Hematology just finished up their annual meeting there. I learned about the conference on this site last night, went to the conference website, and pretty quickly found 116 different abstracts from presentations/papers on ITP from the conference. I'm just working my way through them, and I don't know how that number compares to other blood disorders, but it does tell me that there is a decent amount of attention to ITP.

There was also an editorial in the New England Journal of Medicine from early November, outlining recent progress on ITP and treatment options, which I found very encouraging. It is in the same issue as a report on NPlate (romiplostin), but it is more broadly focused.

I second tamar on the rituxan. I have just been treated with it and hoping for good results, still too early to tell. I was lucky and have had no side effects. I am hoping it will put me into remission so I do not have to go to one of the weekly treatments such as NPlate. You should ask your doctor about it.

And be careful with the Chinese herbs! My ITP was drug-induced and unfortunately I found that just stopping the drug did not magically make the ITP go away.

Hang in there!

Sarah

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10068

  • eklein
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Hello KO,
I agree with saraw and tamar - take a look at Rituxan and also nPlate and Promacta (the latter two increase platelet production and have helped a number of board members who have been refractory to all other treatments.)

Regarding cause, I think one issue is that there are multiple causes. And perhaps cause affects responsiveness to the different treatments.

Something to think about if you are weighing splenectomy - a test called an indium platelet study - available only in Europe (London for sure) - that can tell you where the platelets are being destroyed - liver or spleen. It won't tell you if the surgery will work, but if the platelets are being destroyed in the liver than it can tell you the surgery won't work. And it's an easy test, just an injection of something that tags your platelets, then some scanning to track them over a day or so. And a trip to London!

Also - is there anything else going on with your body that seems unrelated? In particular, consider digestive issues - colitis, IBS, etc. Or thyroid issues? Clearing those things up can have a positive impact on platelet numbers. The immune system is complicated and easily put off whack it seems.

Meanwhile, consider getting a medical alert bracelet that says 'low platelets'.
Good luck! Let us know how you are doing! And maybe come to the conference in Boston this summer - it is valuable and you can get face time with the top doctors.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10069

  • KO27
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Thanks for the input so far.

Yes, I did inadvertently manage to omit something useful-

I haven't considered Rituxin yet because there is a risk of dormant Hepatitis infections getting reactivated and...

In 2004 it was determined that I was, inexplicably, at some point exposed to Hep C (HCV). Before anyone reads anything into this- please read on.

I was discovered to have the antibody for HCV and it was determined that it was an actual exposure rather than a false positive, HOWEVER, through a quantitative RNA analysis it was additionally determined that I had a no measurable viral load and this has been the case for 7 years. No viral load was ever detected and my liver functions are normal.

The best guess is that I was exposed to it at some point in my life, through some atypical and unapparent mean, and that I am one of the 15% or so of people who spontaneously overcome HCV. There are very few things in my life which I am more grateful for, as the 3 months when I thought I had full blown HCV were some of the worst of my life. Apologies to anyone that has HCV, but I'm just being honest.

From what I understand there is a documented history of Rituxin reactivating Hepatitis B infections, and there is perhaps some anecdotal evidence of it reactivating HCV.

I have not been able to confirm any good information about reactivating HCV and my Hemo freely admits to not having a clue about the veracity of this or even where to get clear information.

So, in the absence of any kind of accurate information on this subject I am extremely hesitant to go near Rituxin.

Yes, I understand that any risk, if present, is slight, and that there is probably nothing that can reactivate HCV in me, but the thought of it is terrifying.

Does anyone know where I can get solid information on Rituxin potentially reactivating HCV?


Additional info:

I do also have Gilbert's (elevated Bilirubin) which is genetic from my father. It is, of course, benign, but I've seen it on the forum and wonder if anyone thinks this is relevant?

Thanks again

KO

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10070

  • server
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Hello KO :)
It's always interesting to read others stories. I've been diagnosed since February of this year and have only tried Prednisone, which did nothing at all for my counts, NPlate which did way more than I wanted! (super high counts and terrible side effects) and Rituxan which has kept my counts in an acceptable range for 6 months now. Like everyone else has said, there are so many other options before considering loosing your spleen. Even the option of living with lower numbers! For me anything over 30 and I'm not even going to treat.
You mentioned the fatigue. It seems every doctor is in agreement that fatigue has nothing to do with ITP, but everyone who has it says it plays a major factor in our lives. I dont' get it. When will they start listening to the ones who live with the disorder? I dunno.
Your right, it does feel good to "get it out there" and it feels good to have this place to go to and share. Looking forward to hearing more from you.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10071

  • eklein
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Hi Gretchen,
At conference, the ITP experts are acknowledging that fatigue is sometimes a symptom of low platelets. They think it has to do with platelet role in (serotonin? I think that was it). Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10076

  • barrelgal
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KO,
The people who man the PDSA office are really nice and if you have a specific question (ie will Rituxan re-activate my HC) they will try asking the Dr's who are medical advisors to PDSA (and live and breath ITP) and get you an answer, just give them a call. Also many of these Dr's will consult with your Dr over the phone.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10080

  • tamar
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KO, given that you have antibodies to HCV, I think you're right to hesitate to use rituxan (keep in mind that I am not a doctor and I don't even play one on TV). You might think this is splitting hairs, but the rituxan itself won't "reactivate" a latent virus--it will, however, rid your blood of any B-cells (antibodies) that are protecting you against the virus. And, there's a possibility that rituxan will also wipe out the memory of some of your b-cells, too, so when your body creates new b-cells, they don't remember that they're supposed to protect you against things you've been exposed to in the past.

I think you'd really enjoy the conference, if you can make it!

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10084

  • Sandi
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KO:

Hello - I don't have much to add that the others haven't already said. Just about "cause" though: We ALL thought there had to be a cause when we were diagnosed. For some reason, we think ITP is special and there should be a cause for it. If you look at MS, Graves Disease, Lupus, psoriasis, vitilago, etc...they are all autoimmune disorders without a known cause (or cure). They just happen - hereditary predispostion. The body makes antibodies against self and they attack. The trigger is different for everyone, could be a medication, an illness, some sort of toxic exposure, whatever. It just happens. That is a hard thing to accept, because we like to think if we knew what caused it, we could fix it. It's just not that easy. There is research going on all the time to determine why the body turns against itself, but it's too complex to solve at this time. For some of us, we found that ITP was the first symptom of Lupus and another autoimmune disorder was actually the culprit. A handful of people have had luck treating H. Pylori and a handful have discovered that they had a reaction to quinine. Other than that, the suspected causes were medications and illnesses, but dealing with those things usually do not make the ITP go away.

You do a lot of research and that's great! It's best to be an informed patient and you're already one step ahead of things. You could look into CellCept or Imuran...not appealing options, but may be better than splenectomy. Danazol is another option, but it doesn't work fast or often. In the meantime, know that remissions do occur and there is always hope for that. I never thought it would happen to me, but I've had six years now (after dealing with ITP for 8 years). You never know.

Have you done research on www.bloodjournal.org ? Lots of interesting articles there!

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10094

  • patti
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KO,

I somewhat hesitated if I should post this, but I think it's important to have the information. Because you are positive for Hep. C - make sure you get your hepatitis status tested on a decently frequent basis if you're going to use IVIG. If it works for you, that's great. My son was given Hepatitis B tainted IVIG. Yes, it's not supposed to happen. But it did. Because you have Hep. C your liver is already in a compromised state. So I think staying on top of it is very important and making sure that the screening that is supposed to be done, is getting done. Maybe pushing and requiring your doctor to verify it was tested twice and not just once before they give it to you (probably means having it checked several days in advance). Anyway, a little more frequent testing might be in order for the hep.

patti

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10098

  • KO27
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I stayed up almost all night last night reading through this forum and have learned more in 24 hours here than I have from two Hemos!

You all have my continued gratitude for your encouraging words and information.

Some additional notes:

I failed to mention that I did take the antibiotic cocktail for H.Pylori as this seemed like a no-brainer (low risk, high potential reward), but halfway through my test for the H.Pylori antibody came back negative. I still finished the course, but saw no improvement. I did, however, manage to avoid a nasty cold the rest of my family caught, so it appears the antibiotics may not have been a total waste. :-)

I have had mild/moderate IBS since childhood. It doesn't negatively affect my life (unless I eat a LOT of bacon). Rather humorously my last colonoscopy was termed "grossly unremarkable" in the charmingly understated clinical language of the medical profession.

Someone mentioned Quinine, and while prior to my ITP diagnosis I loved a good vodka tonic, I sincerely hope that in moderation this isn't a risk factor.

It's astonishing to me that my Hemo, while freely admitting he doesn't fully understand what risks are presented by Rituxin and HCV nevertheless thinks it may be "worth the chance".

I am rapidly becoming convinced that if I want more well considered care I am going to have to go after it elsewhere. Here in Florida I understand the Jax Mayo Clinic has an ITP program- has anyone been seen by them? Does anyone know anyone who has been seen there?

I was also suggested to Johns Hopkins as I have family in the area; does anyone have experience with ITP treatment at Johns Hopkins?

I would love some input on anyone's experience at either.

One of my many issues with ITP is that I regularly participated in activities (auto racing, kart racing, mountain biking, etc.) that ITP essentially eliminates as possibilities unless my platelets are above 100.

The other, more responsible, reason that I cannot see my self living with platelet counts below 50K is that in addition to the aforementioned serious fatigue is that I absolutely notice a cognitive difference. This is another situation where my doctor looks at me like an alien when I ask him about it, but it's not at all abstract- my brain is definitely fogged and operating at less than peak efficiency when I'm below 40K.
I don't mean to suggest that it's like I'm walking around with a closed head injury and shouldn't operate heavy machinery, but the effect isn't subtle to me either. My decisions are not as crisp and my productivity is probably 60% of what it is when my platelet tank is full (as it still appears to be now from the IVIG on 12/3).

This, and fatigue, are why I can so accurately tell my Hemo my platelet count (when sub 50) before the test. He seems almost exasperated by this and has no answers.

Being honest, this is why I am trying to pursue this so aggressively- I don't believe I can effectively lead my family and raise my children in the manner I want to with a platelet count in the 30 to 40K range. The prospect of it scares the hell out of me.
At this point I don't care if I ever race cars again (never thought those words would come out of my mouth). As accepting as I am of this, I feel like I have to find a durable solution to ITP that will keep my body and brain operating correctly.

Is anyone else affected in this way?

Again, all thanks for your input and consideration.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10100

  • BethF
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Hello!

Of course, every experience is different, but I thought I would give you some brief info. about my son's journey, as it relates to your questions.

My son, Brady, (14 years old today!) has been dealing with ITP for almost 9 years. In the beginning, we also thought there was no way he could live a "normal" life with low platelets long-term, but here we are. I think that you adjust, both mentally and physically. Brady plays competitive basketball, flag football, rides his bike, and lives an active life. At the moment his count is in the 50s but it is often much lower. We are going skiing after Christmas, so we may need to treat him and that's how we deal with it; treat when he needs higher counts for a more risky activity. At this point, he only receives treatments once a year or so. Like you, we have also gotten pretty good at predicting his counts!

Brady does get extremely fatigued when his count drops below 20k. As someone else mentioned, some doctors are finally acknowledging that this fatigue is related to ITP in some people. As far as I can tell, Brady doesn't get the brain fog you mentioned. He is only in 8th grade, but gets straight A's in all honors classes, so I think that would be impacted if he wasn't operating at top capacity.

A couple years after Brady was first diagnosed, we did get a second opinion from Children's Hospital here in DC. We were already seeing a well-respected hematologist, but just felt like we may be missing something. I'm glad we had the second opinion, but in our case it didn't present anything new and we went back to Brady's original hemo. Then, a couple years ago, we felt like Brady's hemo practice wasn't doing a good enough job. They almost seemed tired of dealing with him, like we should just get a splenectomy or something. I had just attended a PDSA meeting where a doctor from Georgetown University Hospital spoke and we decided to switch to her practice. So - I'm a fan of second opinions or of switching doctors if you're feeling like your doctor isn't meeting your needs.

Good luck - it's always good to ask questions (even if the answers are sometimes exasperating!)

Beth - mom to Brady (age 14, diagnosed 1/18/02)
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10125

  • Sandi
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KO:

Everyone is affected differently. Some feel fatigue, others do not. I only felt severe fatigue below 10k. It was an overall weakness, shakiness and dizziness that made normal life difficult, but I felt the same way on steroids so treating was doing the same thing. It was a tough thing to balance.

I now have brain fog and fatigue most of the time, and my platelets are fine. I think it's more due to the medications I take and having Lupus. There isn't anything that can be done, so I just go with it and do the best I can. As Beth said, you do adjust somehow even if it's not the way you want it to be. You just find a new normal. I've actually quit my job twice this year because I didn't feel I could physically keep up. I then realized that I had to work for financial and insurance reasons, so I went back both times. It can be tough. I know the frustration.

Having said that, a second opinion is always a good thing, but be aware that the options you have are the same. I had a second opinion from an ITP specialist in Pittsburgh. She ran a lot of tests, they took 16 vials of blood, and turned up nothing. Her recommendation: Prednisone. Okay.

There are some cocktails that have caused remissions and your doctor may not be aware of those. One of them is Decadron and Rituxan. I know you are not able to use Rituxan, that was just an example. I can't remember any more off the top of my head, but with some research, you might turn something up. It's too bad you can't try Rituxan because that seems like your best shot at remission at this point. If your goal is just to get your counts to normal, you might consider N-Plate or Promacta. Those are maintenance drugs though so you'd have to keep up with them.

I know my answers to you seem negative in a way and I'm not trying to talk you out of anything, just give you my experience as it was. You do have some options, you just have to find the best ones for you and give them a try. I know you want this over and done with, but there are no magic answers or quick solutions. It's basically trial and error and we've all been there. Some have attained remission and others can't get it no matter what they do. I truly hope that you are one of the lucky ones.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10131

  • meredithjane
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Hi KO,
I explain my fatigue as being short of a cylinder or fuse (or 2)!
Cheers from Down Under
mj

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10132

  • tamar
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KO,

Not sure where in FL you are, but here's a list of 3 hematologists; 1 from Mayo and 2 from Shands. The last one actually mentions ITP as his first interest..unfortunately, it looks like he works mostly inpatient with a little outpatient thrown in.

A good google search might include the words "benign hematology" which will definitely rule out oncologists.

www.mayoclinic.org/bio/10280570.html

www.medicine.ufl.edu/hemonc/kitchens.asp

www.medicine.ufl.edu/hemonc/zumberg.asp

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10138

  • KO27
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Thanks again for the thoughts.

Sandi, I agree that logically there are a finite number of common treatments and I fully accept that I'm not going to walk into any doctor's office, announce that I have ITP, and be offered a cure no-one else has.

This is the first thing that was clear to me; a fixed menu of treatments, most with dismal prospects for permanent relief and all with side effects. This is what I meant when alluding to feeling like I was in a land of lousy options.

Like a girl that is stunningly attractive until she opens her mouth, a splenectomy sounded like the best option until I got on this forum and started reading about people's actual experience with it. Yes, I do fully appreciate that this forum is occupied largely by ITP sufferers and not former sufferers, so the people for whom a splenectomy was successful are probably not here to represent themselves. That notwithstanding, the post splenectomy reports I've been reading have not been at all encouraging.

For my part I still can't get around the idea of removing an organ that is working the way it is supposed to.

So, respecting that all of our treatment options are limited to what is currently available, and not being terribly impressed by any of them, I am trying to look at this a different way. It may be a fool's errand, naivete, or my general lack of experience with ITP, but since the way forward doesn't appear to offer much, I am determined to keep myself stabilized and work backward to try to figure out how this happened, and hope that if this can be pieced together it may lead to a solution.

I accept this is unlikely to be successful, but I don't happen to have anything more important to do, and I think I can provide a sufficiently able facility with enough data points that they might have something to work with.

In addition to the HCV exposure and ITP, I additionally had a previous (bizarre) immune issue in college in 1992. I had some sort of throat infection, the effect was similar to what you might expect from having a pill capsule open in your throat, and I was hospitalized for four days.
For reasons that are unclear to me (I am obtaining the records now) the doctors were absolutely convinced I had AIDS, going so far as to tell my parents this before the test came back. I had no risk factors for HIV, but at the time the docs felt, for whatever reason, that it was the only explanation. It had something to do with a significant immune system failure, and while the staff was quite chagrined when the test came back negative for HIV/AIDS (as I knew it would and had expressed to my horrified parents), they just had no explanation.

So, I am hopeful that between these records, the HCV mystery, and the current ITP issue that there is enough data to suggest a cause, or at least a research direction.

This is also particularly important to me as ITP is now my third experience with an autoimmune issue of one kind or another, and while they could very well be unrelated, I'm not a huge believer in coincidence. I'm a believer in probability, and it seems probable to me that they are related in some way.

This being said, it could very well mean that I will have to deal with something much more serious later in life, and if I take a short term approach now it could leave me in a very bad place down the road.

Therefore I think I absolutely have to try to get ahead of whatever is going on, whether this is ultimately possible or not, and whether or not there is a ghost in the (my) machine or if I just have common ITP unrelated to anything else.

Perhaps my logic is faulty, but I feel like this approach gives me the best opportunity for a solution, or at least the earliest possible discovery of whatever the real problem may be.

I am currently speaking with both Johns Hopkins and the Jax Mayo in an attempt to determine where I might get the best medical consideration and will pursue this vigorously one I determine where to go. I again would welcome anyone's experience with either facility.

Thanks for listening,

KO

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10164

  • Sandi
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KO:

There is nothing wrong with exploring options. Good luck with that and please report anything you happen to find useful. You might want to research "immune deficiency" and "immune disorder". Two very different things, however, can be semi-related (such as CVID).

Quite a few of us have more than one autoimmune disorder. They can cluster.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10167

  • tamar
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KO,

I agree with Sandi (both on that it's good to explore options and that we wish you luck).

If you're looking for personal experience, the thing that got me through the "early years" was having a local doctor who was an expert in benign hematology. He was a clinician, a researcher, and a teacher. He had a great bedside manner and was a supportive partner in defining a treatment plan. I could make an appointment whenever I felt I needed to, I had a standing order to get a platelet count in a local clinic whenever I wanted, and I could send an email if I had a question that didn't warrant an in-person visit (he sometimes responded in minutes).

When I discovered incidently that my count had dropped from 59K to 3K in less than a week, I only waited 15 minutes to see him (because he had to run over from the hemophilia clinic where he served as the director).

I thought my situation was unique, too (an MS diagnosis in 1998 and ITP in 2001), and I spent lots of time and energy trying to track down a doctor who was interested in doing research on that. To no avail. Maybe you'll have better luck than me--I hope so, since that's what you would like.

Please consider not giving up the "short term" at the expense of a "long term" that may never come. That's a recommendation that comes from experience.

Best of luck, and keep us updated!

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10175

  • Sandi
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KO - I forgot - you mentioned quinine. Some people have quinine induced antibodies that can cause thrombocytopenia. If you do not have the antibodies, quinine shouldn't be a problem. If you do, you should never drink it again because it will always cause a drop in counts. There are tests for that.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10177

  • patti
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KO,

Based on what you've decided to do (which makes total sense to me as a naturalist) - I will put this out there for you to look at:

80% of the human immune system is in the gut. Stomach, large, and small intestine. Therefore, when ANY immune issue arises, if one wants to find the source and fix it, you must begin with the gut. So you start by looking at:

leaky gut

food allergies(which are caused by and increased by leaky gut) - US BioTek ELISA 96 food panel

pathogenic bacteria (which we've found to be very key in immune response) - Genova Diagnostics stool test

completely eliminating processed food (anything boxed, canned, jarred)- our gut was not made to eat processed food - this helps lead to leaky (it's a great big circle)


So, there are some ideas for you to look at. Like you, our son had had several immune issues pop up previous to his ITP so we knew it was all related. His gut is healing well and that can be seen in his platelets now as well.


patti

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10210

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Thanks everyone. I will be keeping everyone updated.

Next week, once I receive some past medical records I should be able to confirm that I am going to Johns Hopkins for research.

In the meantime, I see my local hemo on Monday and I am going to have a lot of questions for him, thanks to you all.

If this looks at all promising, or at least if I think anyone might be able to learn anything from my experience, I'll try to do some anonymous blogging as I go through it.

I feel so grateful to have found a 'forum' for discussion and information about ITP which is staffed and populated by caring and considerate people. Thanks.

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10223

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hi,I was diagnosed june03 as a 32 year old male. The first time I went down to 1,000, I did bone marrow test and ruled out leukemia. I was told it was itp and started on steroids. Prednisone 160mg a day did not work for me, IVIG only lasted 3 days. Everything looked bleak after 4-5 months in and out of the hospital with extremely low counts. Started rituxan, once a week for 4 weeks. Didn't seem to be working, but a few weeks after the last treatment my counts started going up. i had reached a normal count in the 300,000 range no meds stayed there for 2yrs. in feb2005 counts fell again, I went with the splenectomy, everything look good with no meds for another 2 years. Thought I was on my way, but in april 08 counts fell again to under 10,000. This time with no spleen we did prevpac for h-pylori, rituxan again. again it took until after the final treatment to go to normal, 400,000 platelets for 2&1/2 years. Just recently down to 12,000 again in November. started rituxan again, up to 3rd treatment now, but still at 13,000. Just wanted to share my story because I was losing hope each time. If rituxin doesn't work my doctor is thinking about n-plate. Does anyone have any experience taking n-plate? Thanks, Pete

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10230

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anyone have news on nplate

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10231

  • Sandi
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Pete - it's slow here on weekends for some reason. If you do a search, you'll find a few discussions about N-Plate.

Here's one:

www.pdsa.org/discussion-groups/7-treatment-general/8394-promacta-or-nplate-not-sure.html#8436

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10235

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Hi KO,
I have the same questions and the same experience. It seems to me that neither of the two hem docs I have seem are interested in trying to search for a cause. I just keep hearing well that is why they call it ideopathic. I believe there must be some trigger or some cause. If they treated cancer that way we would not know about the many different causes and different treatments. I beleive there is not just one ITP just as there is not just one cancer.

I have had a similar experience to you as well with my fatigue. I get really fatigues when my platelets are dropping and can usually tell before I see petichai or purpura that my platelets are going down. I have noticed that my platelets drop when I am exposed to a cold or other infections despite being on a mantenance dose of 40mg of prednisone.

I would like to hear from others about their experiences and I am not in favor of a spleenectomy or taking N-plate right now. I respect others that have made those choices but it doesn't seem to be a good option for me. I get infections easy and taking out my spleen seems risky at best.

N-Plate, from what I have read affects your bone marrow and can affect other cell lines. Again, depends on each person history etc, but not something I want to do until I have exhausted all other possibilities and looked at possible causes and relationships between other infections etc that are going on in my body before we do anything else.

I know when we treated my H-Pylori my counts went up to double digits and stayed there for a few weeks. The platelet bouncing is thw worst part. Hope to hear more from you. :)
Hi
I was recently diagnosed with ITP and have found the posts related to Promacta informative and interesting. So far we have tried prednisone which worked for about a week. My counts went from 6 to 303 but dropped back to 6 in a week.Dexamethazone had the same effects with 202 to 6 and 202 to 14....

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10236

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Patti,
Thank you. I have considered that my ITP is related to my stomach issues. I responded well to H-Pylori treatment. I would like more information about the differents tests you mention, and Leaky Gut?
Hi
I was recently diagnosed with ITP and have found the posts related to Promacta informative and interesting. So far we have tried prednisone which worked for about a week. My counts went from 6 to 303 but dropped back to 6 in a week.Dexamethazone had the same effects with 202 to 6 and 202 to 14....

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10237

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What is the treatment? I did have quinine, just a sip, before my ITP went into overdrive. Any more info on this would be greatly appreciated.
Hi
I was recently diagnosed with ITP and have found the posts related to Promacta informative and interesting. So far we have tried prednisone which worked for about a week. My counts went from 6 to 303 but dropped back to 6 in a week.Dexamethazone had the same effects with 202 to 6 and 202 to 14....

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Re:New to ITP, my story attached, have questions 8 years 6 months ago #10240

  • Lindy
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Hi BernadetteK,

I'm wondering how was your H-Pylori treated? Thanks.

I remember two years ago I was hospitlised for severe food poisoning.
Shortly after I recover I still bad episodes of stomach problem. Subsequently its back to normal. Last year I was told I had low platelets (ITP). Maybe its linked??? :huh:

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