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New to ITP, my story attached, have questions 7 years 3 months ago #44673

  • KO27
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Hey guys,

I wanted to check in with a quick update- I'm only getting my platelets checked every three months now, but I did just have a draw and was gratified to discover that they are at 108K, which is the highest number I've seen in 4+ years absent any treatments or external factors.
I would consider myself asymptomatic at this point save for disproportionate bruising, but I can't really complain.

I always said that when/if I were to overcome ITP that I wouldn't abandon the forum as it was a profound source of both information and inspiration through what was, at times, a very troubling experience.

I'll keep checking in from time to time, and I appreciate all of the truly great effort everyone on the forum puts forth to help one another.

Very Sincere Thanks,

KO27

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New to ITP, my story attached, have questions 7 years 3 months ago #44674

  • DeeDee Marie
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Hi KO27,

I just looked and realized it's been a year since you were having major problems! I haven't had any treatment for over 4 years, too; but, I've had a relapse twice in the last 8+ years. Something will probably trigger it in the future, and I want to be prepared and not panic. Keep in touch if you can and it's so nice to hear that you are doing well!

Good luck to you!

Dee Dee

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New to ITP, my story attached, have questions 7 years 3 months ago #44677

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well hello! I was just thinking about you last night, no kidding. I'm glad things are going well for you and happy that you checked in!

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New to ITP, my story attached, have questions 7 years 3 days ago #45888

  • KO27
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Just a quick post- I'm having draws every two months now, and my most recent draw (the first one since the 108 I previously posted) was 186!!!

I was diagnosed with ITP about 4.5 years ago, and my last blood draw prior to that was three years. At that time (7.5 years ago) my platelets measured 150, so my retrospective impression is that I was already under attack and just didn't realize it for another three years.

So, with platelets at 186K this is the first time in at least 7.5 years that I can say my platelets are securely in the normal range, absent any treatment. It's amazing, humbling and gratifying.

Of course, a relapse is always possible, but if you've read my thread you know that I believe I ferreted out and eliminated the source of my ITP with a high degree of probability. Never say never, but I'm liking the odds right now.

I'll write back with a little more detail later, but I wanted to drop a line and keep up to date.

Best Regards to everyone, and thank you Sandi.

KO
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New to ITP, my story attached, have questions 7 years 3 days ago #45890

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Good for you! Happy to hear that all is well. :)

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New to ITP, my story attached, have questions 7 years 3 days ago #45904

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Congrats on such a great count and for your diligence in finding what helped you!

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New to ITP, my story attached, have questions 6 years 11 months ago #46359

  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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KO
Thank you for your posts. I was just diagnosed in january 2015. I am an otherwise healthy 50 yr old woman with no other medical issues or diagnosis. I was running half marathons and did a 15 k in december so the diagnosis was a total shock. Like you and everyone else, the thought of the profound changes in my life has been devastating. I feel so fragile now. I appreciate you checking in. Like you, i looked back and the only blood test i have pre ITP is from may 2012. Platelets at 142 so now i think i have had this for a few years without knowing it. That makes figuring out an environmental cause that much harder. Again thank you for providing your entire journey in one place so it was easy to follow. All the best.

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New to ITP, my story attached, have questions 6 years 11 months ago #46375

  • KO27
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Emily,

Thanks for writing. The first thing I would tell you is not to panic. The second would be to not get a splenectomy (yet). The third would be to avoid WinRHo at all costs.

In the beginning ITP can feel like a death sentence, particularly if you've been healthy up to this point. Time and experience (like hanging out in a chemo room receiving IVIg when everyone else is getting chemo drugs) will demonstrate that it's not. It's for this reason that you might feel your doctor, a hema/onc isn't taking you super-seriously. It's because many of the rest of his patients, the oncology patients, are actively dying, and you're not. Remember that and keep it in perspective.

You've probably already gone through steroids and are looking at your next step, and it was at this point that my first Hema recommended spleen removal. That's when I asked a doctor neighbor to refer me to another Hema.

Here's what I can tell you- your spleen in an organ. It's not vestigial; it does something. And it's probably working perfectly, doing exactly what it's supposed to do. That isn't the normal circumstance under which organs are removed.
Spleens are removed because doctors don't know what else to do, and they know this works sometimes.

I think there are circumstances where the spleen must be removed, but I think in the majority of cases it's a lazy, dangerous and short-sighted solution.

NO MATTER WHAT you have to have an indium test performed before you even consider a splenectomy, for the reason I explain earlier in this thread. At least then you'll know if there's a chance it will work.

I don't know your situation, but if your platelets are at a sustainable level, say +25K, with treatment (and the treatment is tolerable) then you have time on your side. I would start making a graph of your platelet counts and begin doing some experiments to see if they rise or fall with different environmental factors (food, air quality, etc.), but only do one at a time and give it enough time for the results, if any, to be visible. It took me a couple of years to figure out that my trigger was a toxic HVAC system possibly combined with a wheat allergy. And I was damn lucky.

How you proceed depends on your outlook, time, and interest in solving your ITP, and that's assuming it's solvable. It may not be possible under any circumstances, or simply may not be with the time and resources you have, and you have to accept this up front.

I would say to address all of the low hanging fruit early- get tested for Celiac (with a biopsy!) and H.pylori (again, probably with a biopsy) to make sure the answer isn't right in front of you. I don't have celiac, but an allergist (the kind that sticks 135 needles in your back to test for different things) determined I do have a wheat allergy, so I dramatically cut my bread intake. Unless you actually have Celiac it may be enough to cut your bread intake and not go Gluten-Free crazy.

Be careful of every drug you agree to take- Rituxin can absolutely help in some cases, but you won't have a useful immune system for a year, and of course, it can kill you via allergic reaction.

WinRHo is a horror show in my opinion. It has an FDA black box warning that literally says it can kill you, and last I checked it had killed nine people. And if it doesn't kill you it can wreck organs via a particularly grotesque hemolytic reaction. Again, I was damn lucky.

There are only two ways medicine has to treat ITP- either by hobbling your immune system so that you don't kill your own platelets as efficiently, or by increasing your platelet production so that your counts stay ahead of the accelerated culling. The latter therapies are new, and I don't have any direct experience with them. While I understood that treatment options are limited, I hadn't gotten to the point where I was willing to try brand new drugs that didn't have a track record, particularly as some of the ones with a track record were a bit dodgy.

Finally, I'll say that a lot of the battle here is psychological, and perhaps intellectual. You have to overcome the feeling of fragility- you can't fight if you're hiding behind a rock. You also can't look at this emotionally- you have to look at it clinically, logically. Something caused this. That answer exists. And if I haven't demonstrated anything else in my process, it's that not only is the answer knowable, but that in at least some cases if that cause, that instigator, is discovered and removed, the problem will resolve. Good doctors will tell you this might be true, bad doctors will tell you that's it's not, that knowing why the snowball started rolling down the mountain doesn't make it stop. That's one theory. My experience presents an altogether different perspective.

Also, I don't know where you live, but unless you live in Boston, Baltimore, or New York, you're probably not being evaluated by the best doctors in the country. Consider making that trip.

So, do whatever you have to do to get the Indium test. I had heard they have it now at Hopkins, but I'm not 100% sure. They have it in London for $1000 (I have no idea why a Nuclear Medicine test only costs $1000, but that's it) and for me it was only a few thousand Skymiles away.

Feel free to keep in touch, and I'll give you the best input I can for whatever it's worth.

Best Regards,

KO

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New to ITP, my story attached, have questions 6 years 11 months ago #46376

  • tamar
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Hi Emily,

I feel I have to chime in here to say....don't believe everything you read on the Internet, do your research, and keep an open mind.

I met with my hematologist on Friday (I've had ITP since 2001), and if they'd had WinRho in stock, I would've received a treatment that afternoon.

KO has a very interesting story to tell, but it's not representative of the majority of us. His statements above are a bit militant and very scary, IMO. My advice would probably be very different...though I'm not prone to giving such emphatic advice.

Do you have your own thread? If not, you should start one to get a more varied view of the options and what has and hasn't worked for others.

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New to ITP, my story attached, have questions 6 years 11 months ago #46377

  • KO27
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Emily,

As Tamar said, everybody has their own opinion.

This is the FDA's opinion of WinRho:

www.fda.gov/downloads/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/LicensedProductsBLAs/FractionatedPlasmaProducts/UCM198717.pdf

KO

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New to ITP, my story attached, have questions 6 years 11 months ago #46378

  • tamar
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Yep, and then there's this...

www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm203739.htm

Fatal outcomes associated with IVH and its complications have occurred most frequently in patients of advanced age (age over 65) with co-morbid conditions.

I would not encourage anyone to take WinRho. But I also wouldn't call it out as "horror story". I've had it 20 times, and it was what got me through the toughest years.

Rituxan has a black box warning also.

I'm not tremendously active on this site, but I do venture out to others' threads to see if I can provide a helpful perspective. As I mentioned, Emily, I think you'll get some good advice in the thread you created, hopefully with multiple opinions.

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New to ITP, my story attached, have questions 6 years 11 months ago #46380

  • Sandi
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Win-Rho has a black box warning. Rituxan has a black box warning.

But....IVIG also has a black box warning.

primaryimmune.org/fda-safety-communication-new-boxed-warning-for-thrombosis-related-to-human-immune-globulin-products/

Point being, every treatment has it's risks. Potentially serious side effects from all three of those meds are not common, but they do occur. Since the black box warning for Win-Rho came out, the procedure to administer the drug has changed drastically. Patients are monitored very closely. Win-Rho used to be the easiest, most benign treatment available to manage ITP but that has changed. In my opinion, Rituxan is the most toxic of the three, but of course that is debatable.

Once a patient has moved past steroids and needs to consider the next step, all treatment options should be evaluated carefully. All treatments have risks and if treatment can be avoided, that should also be considered, as normal counts are not needed for daily life.

Tamar - your counts are down?

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New to ITP, my story attached, have questions 6 years 11 months ago #46381

  • tamar
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Tamar - your counts are down?


Yep...I'm being treated later this week. :huh: I'll start my own update thread.

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New to ITP, my story attached, have questions 6 years 11 months ago #46383

  • KO27
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My understanding is that Rituxin kills more people, but it's also administered much more frequently and for a broader range of conditions, such as Leukemia. The one person I know who died from a Rituxin reaction was, in fact, a cancer patient.

I think the ratio of administration/deaths is probably significantly higher for WinRho than Rituxin, but admittedly I haven't found the data yet.

My thread is about my experience and my journey, and when I used the phrase 'Horror Show' it is with respect to my experience and my understanding of the risks vs benefits.
Specifically, I was a 42 y/o man, fit, and with no attending health problems, and a single (first) administration of WinhRho caused a severe Hemolytic reaction which almost killed me. I have three children under 10 years old, and this one drug almost ensured I never saw them again. That's my definition of a horror show.

A doctor might recommend a specific therapy, a therapy with the benefit of raising your platelets for a period of time, but what you're risking for that benefit could be death, and I think a lot of patients don't really understand it could happen to them. I don't mind saying that I certainly didn't. I thought the people who were caught out, had allergic reactions were old, in ill health or as Tamar said had "co-morbid" conditions. I didn't, but I almost wound up with a morbid one.

Everything has risks. Every treatment has risks. My overarching point is that you have to truly understand the risks and that your decisions can have very serious consequences. This isn't Advil vs Tylenol. The choices are not so much good and better as they are bad and worse.

Last thought- it really should come down to math, and I'm apologize that I don't have the data (yet) but take two activities that for which the data is known- Skydiving and a Liver Biopsy. They both have risks. They both can kill you. Skydiving's mortality risk is about 1/100,000. A liver biopsy, last time I checked, was 1/10,000, so as a medical procedure it's 10 times more dangerous than Skydiving. While I don't have hard data, my understanding is that WinRho is similarly much more dangerous than Rituxin and IVIg. And in my personal experience as an otherwise healthy person, it sure as hell was.

Of course, think for yourself, do your own research, check multiple sources, and make your own decisions. But understand the math before you agree to any therapy.

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New to ITP, my story attached, have questions 6 years 11 months ago #46384

  • KO27
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Tamar, sorry to hear that and I wish you the best.

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New to ITP, my story attached, have questions 6 years 11 months ago #46385

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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KO:

Experiences do guide opinions, that's for sure. I had a bad reaction to Rituxan (serum sickness) which ended up causing a spiral of problems that destroyed my health and caused permanent disability. I had six Win-Rho treatments (3 minute IV push) and went back to work afterwards with no additional problems. It's all perspective. Other than ITP, I had no known medical conditions at the time when I used either drug. I did apparently have a predisposition, but could not have known about it. Back when Tamar and I were first using Win-Rho, the treatment was considered no big deal and it was treated as such. Rituxan was just coming out and there were no TPO's. It was used much more often than it is now since most people opt for Rituxan and a longer remission.

As the years go by, I am becoming more and more convinced that there is too much over-treating going on. Fear of lower than normal counts and the need to want to be 'normal' is influencing decisions. Not much anyone can do about that.

Tamar:

Okay, will look for your thread!

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New to ITP, my story attached, have questions 6 years 11 months ago #46386

  • tamar
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KO:


As the years go by, I am becoming more and more convinced that there is too much over-treating going on. Fear of lower than normal counts and the need to want to be 'normal' is influencing decisions. Not much anyone can do about that.

Tamar:

Okay, will look for your thread!


Okay, just one more comment here, and then I'll move to my own thread. Sandi, I think you bring up a very salient point. What is the chance that there will be a bad outcome without treating? With a platelet count of 50, I am not going to "take the risk" of a treatment with even a very small chance of a negative outcome. At 15, the odds shift, and at 5, they shift some more.

To turn KO's example on its head...what's the risk of NOT skydiving vs the risk of NOT having a liver biopsy when a doctor has told you you need one? The statistics means something different when other factors are in play. (steps off soapbox).

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New to ITP, my story attached, have questions 6 years 11 months ago #46388

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Okay, just one more comment here, and then I'll move to my own thread. Sandi, I think you bring up a very salient point. What is the chance that there will be a bad outcome without treating? With a platelet count of 50, I am not going to "take the risk" of a treatment with even a very small chance of a negative outcome. At 15, the odds shift, and at 5, they shift some more.

To turn KO's example on its head...what's the risk of NOT skydiving vs the risk of NOT having a liver biopsy when a doctor has told you you need one? The statistics means something different when other factors are in play. (steps off soapbox).


Exactly. We can all look at odds and statistics, but they don't mean much until one of us is the odd man out that has the adverse affect. The odds of a brain bleed are .0162% (I believe) and the risk of dying from infection is equal to or slightly greater than that. Tough decisions for all!

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New to ITP, my story attached, have questions 6 years 11 months ago #46399

  • eklein
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To make it more complicated, you also have to factor in your own symptoms. For example, some of us bleed at lower counts and some of us don't tend to bleed. Some of us feel fine at lower counts. Personally I feel just awful when my counts are dropping or low and in the past I treated at counts that would be considered safe (40-50.)

If you have bleeding symptoms you have a more urgent situation.

It's a lot to weigh. As everyone is suggesting, get started here and also do the research yourself. SCIENCE yay!
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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New to ITP, my story attached, have questions 6 years 11 months ago #46412

  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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KO
Thanks for the response. I read everything you posted over the years. I will check at johns hopkins but have already been in touch with the london hospital and will not consider loss of my spleen until i have that test. I have fantastic insurance, luckily. I have had all the tests and the bone marrow testing fun, CT scans and the only thing wrong is platelets. I have had IVIG without any change. Lots of horrid steroids and would do almost anything to avoid that process again but good to know they work for me. I had my fourth NPlate shot today. At 90000 down from 300000 on friday. Just having two somewhat consistent result would be really nice. I have a second opinion on wednesday. Only common treatment i have not had is rituxan. My recollection is you slept through your rituxan treatment without incident. I think my ITP was a reaction to hormone changes as i went through menopause but no real way to know. I see a naturopath on friday. The whole thing sucks. I really appreciate this forum for reassurance. I look forward to the day i can reassure another victim of ITP that things will be ok. I have been as low as 4000 and as high as 500000. Every day i do not have bleeding is a relief. Hoping to make it to friday and stay over 40000. Thanks for listening.

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New to ITP, my story attached, have questions 6 years 11 months ago #46413

  • EmilyK
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Again thanks to all. I have done lots of research. A doctor friend gave me a 30 day pass to "uptodate". Its used by millions of doctors and has all the current research with treatments, risks etc. i have read the blood journal articles and hematology journal articles. We all know the choices are limited and ITP will not kill me. I need to feel safe and be able to have a life other than worrying about my platelet count. As i said, i know i will get there but i am not there yet. Hugs to all for your wisdom, insight, patience and generosity.

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New to ITP, my story attached, have questions 6 years 11 months ago #46425

  • tamar
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We all know the choices are limited and ITP will not kill me. I need to feel safe and be able to have a life other than worrying about my platelet count.


VERY astute, especially for a newbie, Emily. Good for you!
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New to ITP, my story attached, have questions 5 years 6 months ago #54998

  • KO27
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I hope everyone is doing well. I wanted to pass on a note that I will be speaking at the Patient Forum of the PDSA conference tomorrow (7/10/16) between 10:45 and 11:45 AM Eastern.

I gave this a lot of thought, and I realized that I wouldn't have progressed in my treatment of ITP nearly as quickly if I hadn't had the support and input of the forum, so I ultimately decided to place aside the anonymity afforded by the forum for the opportunity to share my journey here in my home city of Orlando.

I look forward to speaking, sharing and meeting anyone in attendance.

Sincerely,

Keith Ori (KO27)

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New to ITP, my story attached, have questions 5 years 6 months ago #54999

  • EmilyK
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Thank you for speaking. Good luck.

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New to ITP, my story attached, have questions 5 years 6 months ago #55000

  • Sandi
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Good luck! I really wish I was going to be there!

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New to ITP, my story attached, have questions 5 years 6 months ago #55012

  • Nomad
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Important side note...
Has anyone seen The Truth About Cancer series? I think it was only shown on line.
Some key figures in the medical industry were interviewed. One was a physician who hid his face. Most, if not all, were hidden. They explained how drugs that should never be allowed on the market somehow get onto the market. Statistics are mismanaged and money exchanges hands. The way this is all swept under the rug and justified in the minds of those in charge is...."The Black Box Warning." My take away from this was I personally would greatly avoid a medication with a black box warning. Obviously, this was not verified and could be exaggerated, etc. but it made me very uncomfortable about meds with these warnings.

K027... Thank you for gicving me the name of a dr. To check out in Orlando. I've been very nervous about our upcoming move to the city. This gives us at the very least, an excellent starting point and I feel better. Your talk was very interesting. Thank you for that as well. Very happy to hear of your normal counts.

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New to ITP, my story attached, have questions 5 years 6 months ago #55013

  • KO27
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Nomad,

No worries; I really enjoyed the opportunity to share my story and meet some interesting people. Hope you enjoy Orlando!

KO

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New to ITP, my story attached, have questions 5 years 6 months ago #55025

  • Sandi
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Nomad:

I have been feeling the same way about medications lately. Avoid if at all possible. I am on seven prescriptions and am really trying to get off of them.
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New to ITP, my story attached, have questions 5 years 6 months ago #55026

  • DeeDee Marie
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Nomad,

Thank you for sharing with us and at the conference. I was able to attend two conferences (one in California and one in Denver). I hope to go again in the future. I agree with you on a lot of different points (and especially the mold and allergies). I am a person who, too, is very allergic to everything. I've been this way since I was a child. So, it stays with us as we get older. My son is also this way. I've been in remission for 6 years now and try to stay away from stressors and a lot of medication--which I find effects me.

Good luck to you in the future and please do keep us posted. We like to hear the good stories, too!

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New to ITP, my story attached, have questions 5 years 6 months ago #55047

  • Nomad
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I didn't share at the conference. I was there though and met KO and spoke to him briefly. Very helpful stuff. We visit Orlando often as we have family there and are likely to move there in the not too distant future.

Maybe one day I will post my story. Although I'm not certain, I think mine might be slightly different than many of the others posting here. I've had ITP 40 years. Yes, that is forty. Had much hell at the beginning. Lots of prednisone. Then was very good for decades with counts of 70-80 and no meds.

Then, over the last year or so, it started slipping...slowly but surely. I have my theories as to why. (For another day).

I am one of the ones ;) who thinks a good diet helps. I've had "some" improvement when I drink my green drink often and avoid junk food. Ironically, I met a woman from Chicago at the conference who told me she is doing the exact same thing! I was flabbergasted. We are both avoiding meds and well, barely hanging in there and doing so by drinking these darn drinks. My doc has told me if my count falls to 20 and certainly below, she will need to do IVIG. So....not absolutely certain, but I seem to be able to keep my count 30 and above by drinking my "green" drinks often. In the drink is: kale, spinach, apple and pineapple. The woman I met from Chicago, is doing the same thing drinking a very similar drink...primarily of kale and spinach. She doesn't like pineapple. She feels it is the spinach and kale that are helping her and therefore concentrates on those two ingredients. I was very surprised to meet someone almost mimicking my situation and regret I didn't get her contact info.

Ok...but here is my reason for today's post! My last two counts (prior to this week) had been thirty. Hmmm. I've been hearing all this gluten free stuff. Not very scientific, because for the last few weeks I've been more diligent with my green juices AND I was gluten free. But, being gluten free was the new thing.

Well, my count was FIFTY/50. I also have almost NO petechae. I'm thinking being gluten free might be helpful. I also have much less bloating. I see some potential here. :)

We will see what happens as I try very hard to keep up these two things: being gluten free and drinking lots of green veggie juice.

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