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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20488

  • KO27
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Here's the thing, which I suppose I should have added;

Prior to acquiring ITP I was very active; I raced cars, go-karts and occasionally mountain bikes. I skydived (occasionally), jumped on a trampoline all day with my kids (7,5,2). I was very active, and while I'm 42 I'm just 5'7" and 150 lbs, and I'm in decent shape (though I could use more hair).

My point is that for perhaps more than most my lifestyle has been affected almost traumatically. I've accepted this as a temporary condition, but living at 35K platelets would make it permanent, which is depressing.

My doctor at Hopkins said that Promacta/N-Plate could give me a reliable 35K platelets in perpetuity and my question to him was "who can live on 35k platelets, permanently?"

Without irony or missing a beat he replied "Government workers." with a dead straight face.

With all respect to government workers, I'm not one of them. I don't mean to sound elitist (I'm not, or I'd have more hair and a BMW), but I expect a lot from myself and ITP has really caused major changes in my life.

This has to be taken into account when I weigh my options.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20489

  • Ann
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I think you're probably right that Nplate is not going to be of use to you. Not that it gives a reliable 35, because it doesn't, but it just isn't reliable at all. My counts can go up and down all over the place and still be safe for my lifestyle.. I suppose I'm almost a government worker, working as I do in the NHS! but it wouldn't do for you.

I can see why you're drawn to the splenectomy route but oh boy what a disappointment if it didn't work.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20491

  • 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:

I don't think the word "permanently" applies here. Many people have found that their counts changed for the better - with or without a certain treatment - when they least expected it. Nothing is set in stone. This has certainly placed a bump in your road, but it does not have to be considered a crash for a lifetime.

Things can go back to normal; it just might take some time.

Believe me, I totally understand the feelings that come with having to make lifestyle changes due to illness. As much as you love your activities, I have always loved the sun. I have a pool and spent a lot of time on weekends in the summer just floating and relaxing. We vacation at the beach every year and I would sit outside from the time I got up until it was time for dinner. I soaked it up and loved it. I thought Lou Bega wrote Mambo No. 5 for me when he said "a little bit of Sandra in the sun". Only a true sun worshipper would understand this. Then I got diagnosed with Lupus and spending time in the sun can have serious consequences. No more of that. There is no hope whatsoever that I can go back to that. None....ever. No treatment will ever change that for me. Never mind the fact that I do realize it wasn't a good habit - I still loved it. It was a harsh reality for me that I had to give it up. I also live with muscles that are slowly deteriorating and weakening and I can't exercise. I'm pretty limited in a lot of aspects, and it affects my ability to do my job. I plug away everyday anyway. My employer doesn't suffer; I do. Nothing I can do about that either. You wouldn't believe how many doctors I've seen.

My point is that yeah, sometimes life sucks. Things just don't go the way you planned. But you do have hope here. So many people go into remission and life just resumes. ITP is one of the few autoimmune disorders where there is a lot of hope for that. No one likes an illness that intrudes on their life, but the majority of people here can eventually get back to normal.

I keep hearing from you that below normal counts are not acceptable to you. In your case, it might be a good idea to seriously consider the splenectomy. That is probably your best chance of having your life back the way you want it. If it doesn't work, you will have to try something else and hope for the best. The TPO's do raise counts to normal for some people - you could be one of them.

PS - people can and do live quite well with 35k permanently. I probably wouldn't sky dive, but I might do some trampoline jumping here and there.

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Re: New to ITP, my story attached, have questions 10 years 4 weeks ago #20721

  • KO27
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Hey everybody, I hope your holidays went well.

I updating now because I got a few surprises at my visit to Johns Hopkins on 12/22, none of which were good, and I’d welcome input if anyone has previously seen or experienced what I’m about to describe.

The initial bloodwork that was done at Hopkins included a Retic Count and an Absolute Retic Count, neither of which are done on my regular weekly CBC and biweekly blood chemistry. My local Orlando Hema explained that this was because to anemia has presented, so the Retic count wasn’t necessary.

At Hopkins however, my Absolute Retic Count was 155.2 (norm to Hopkins is 24.1 to 87.7) and my Retic Count was 3.3 (norm is .5 to 1.8).

Dr. Z at Hopkins believes this is due to hemolysis and immediately had me give more blood prior to leaving, for analysis overnight.

He called the next morning and gave me the results; while the Coombs test was negative (as it had been in May), my LDH was elevated. I don’t remember the number but if memory serves it was 50% above normal.

We’re still waiting for some additional tests, and Dr. Z did request that an even more sensitive Coombs test be run on my bloodwork, but generally speaking he thinks there is perhaps a 95% chance that I have an antibody to my red blood cells at this point, even if he hasn’t found it.

This was not at all what I was expecting, as outlined in my last few posts, and it’s caught me totally by surprise.

The data is not yet conclusive, as my local Hema (the one that doesn’t work at Johns Hopkins) pointed out that I don’t have the anemia one would normally see with this condition.

To summarize, here are the stats:

• No Anemia
• Standard Coombs test negative
• Absolute Retic Count was 155.2 (norm to Hopkins is 24.1 to 87.7) and my Retic Count was 3.3 (norm is .5 to 1.8)
• LDH probably 50% above normal

Has anyone out there seen or experienced something like this before, and if so, how did it resolve?


Dr. Z at Hopkins did ask me to increase my Prednisone dose to 10mg/day with the anticipation that the my Retic counts with decrease when presented with increased immunosuppressants. I’ll have the Retic counts measured again tomorrow at my local Hema, and from what Dr. Z has explained, if my Retic counts are lower it will confirm his supposition that hemolysis is occurring because the Prednisone will slow that reaction down just as it does with platelet destruction.

Great. No matter what, I’m going to get bad news tomorrow. If my Retic counts are lower, then I probably have an antibody to my own red blood cells, and if they’re not lower the remaining possibilities are equally dismal.

I thank you for reading and I look forward to any and all input as I try to make sense of this.

Best Regards,

KO

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Re: New to ITP, my story attached, have questions 10 years 4 weeks ago #20727

  • Ann
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I'm sorry you are having more things of concern. It doesn't have to be anything to worry about. My LDH was high when tested too and I do have antibodies to my red cells (as well as white cells and platelets) but I too am not anaemic and so there is no worry at the moment. It may be that nothing else ever happens. The same may be true for you. If we are not anaemic then our bodies are coping.

Let us know what happens tomorrow.

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Re: New to ITP, my story attached, have questions 10 years 4 weeks ago #20733

  • Sandi
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Yeah, I've also had some very strange things in bloodwork that turned out to not be a problem (so far). I could give a very long list of those. You learn to not worry until the doctor tells you that you should.

Good luck - I hope it turns out well.

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Re: New to ITP, my story attached, have questions 10 years 4 weeks ago #20735

  • eklein
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I was wondering what sort of problems those indicators might suggest - I'm not familiar with those blood elements. Is it just that the numbers are out of range or does it suggest some health problem(s)?
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 10 years 4 weeks ago #20745

  • debrasla
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Where is this platelet study in Europe? How can I find info on that for my son?

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Re:New to ITP, my story attached, have questions 10 years 4 weeks ago #20765

  • 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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Debra - you only need to consider that if you're thinking of splenectomy. It doesn't tell you if the surgery will work, it only tells you if it won't.

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Re:New to ITP, my story attached, have questions 10 years 3 weeks ago #20773

  • debrasla
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ok, thanks
does insurance cover that kind of test over there?

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Re:New to ITP, my story attached, have questions 10 years 3 weeks ago #20774

  • eklein
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American insurance won't cover it. Not sure about if you live in the country where the test is.

Briefly - the test will determine if platelet destruction is in the spleen, the liver or both. If it is in the liver or mostly in the liver, removing the spleen won't help so don't bother with splenectomy. I think that only a small percentage of people have destruction mostly in the liver.

But - if destruction is mostly in the spleen and you have your spleen out, sometimes the liver takes over platelet destruction. This can't be predicted.

That's why we say that the test will predict if the splenectomy will fail but not if it will succeed.
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 10 years 3 weeks ago #20787

  • KO27
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Debra,

Correctly, the test is only of value if you’re considering a splenectomy for your son.

However, in that circumstance I would consider this test both priceless and mandatory.

In strictly mathematical terms, the test significantly increases the probability of a successful splenectomy.
As I explained a few pages ago on this thread, a well-credentialed friend of mine did the math for me and determined that having the Indium test raised the probability of a generally successful (in fairness, without defining success- though this isn’t important because we are the using the same form of measurement for both numbers) outcome from 65% without the test to 87% with the test.
The reason for this is easy to see- in the general population approximately 25% of people have their platelet destruction occur in their liver. For these people a splenectomy would be useless and actually detrimental.
The Indium test identifies these people and eliminates them as candidates for a splenectomy, therefore the remaining population ALL are known to have the platelet destruction occur in the spleen.
In removing this, the probabilities show that approximately 13% of these people will, unfortunately, have their platelet destruction move to the liver in the spleen’s absence.
The remaining 87% will then receive a successful remission, though as it has been pointed out, this is not a closely defined term.

For this reason, I understand the Indium test to be essential. I respect everyone’s individual decision, but I will go on record saying that anyone who has a splenectomy (obviously outside of an emergency situation) without the Indium test is either unable to afford it, doesn’t truly care about their outcome or simply isn’t very good at math.

I gave the best description I could of the procedure a few pages back, on this thread.

Apologies to anyone I might have inadvertently offended; again, I respect everyone’s individual decisions.

KO

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Re:New to ITP, my story attached, have questions 10 years 3 weeks ago #20797

  • eklein
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KO,
Your logic is on target I think, can you share with us roughly what the cost was for you, an American, to get the Indium test done? Include travel costs. I think 'can't afford' is going to cover a lot of people. Costs also include time off from work.
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 10 years 3 weeks ago #20814

  • 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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I just read a few articles which defined long term splenectomy success as "three to five years". This is the first time I've come across a time reference.


"Eighty percent of patients respond to splenectomy, and response is sustained in 66% with no additional therapy for at least 5 years. Many patients without a complete response can still expect a partial or transient response. Approximately 14% of patients do not respond and approximately 20% of responders relapse weeks, months, or years later (evidence level IIb).


Complications of splenectomy.

Complications of splenectomy include bleeding, infection, thrombosis, prolonged hospitalization, readmission to the hospital, and requirement for additional intervention. Reported complication rates vary considerably and may be greater in patients aged 65 years or older. In a recent systematic analysis, splenectomy complication rates were 12.9% with laparotomy and 9.6% with laparoscopy; mortality was 1.0% with laparotomy and 0.2% with laparoscopy.104

Because ITP and splenectomy are both associated with thromboembolic risks, ITP patients should receive appropriate postoperative thromboprophylaxis."

bloodjournal.hematologylibrary.org/content/115/2/168.full?sid=ad412af6-4704-473c-a7f4-5ac68db76fe3


In general, the long-term results of splenectomy -- long-term being defined as at least three to five years -- show a platelet count of about 50,000 in about 50% of patients. We see an awful lot of patients referred for refractory autoimmune thrombocytopenia. They have been splenectomized already. Sometimes these cases are frustrating because most of the drugs already have been tried at other institutions. With these patients, we are using a fair amount of Rituximab®. There are no large controlled studies, though. Frequently, we just go back to prednisone and IV-IgG.


www.hopkins-arthritis.org/physician-corn...ia_rheumrounds8.html

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Re:New to ITP, my story attached, have questions 10 years 3 weeks ago #20820

  • KO27
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Erica,

My costs for the Indium test in London were as follows (approximately):

Flight to UK- $1200.00 (I used FF miles, however)

Hotel in London $1500.00 (5 nights. This sucks, but it's London, not Lincoln, NB)

Cost of test $1540.00 (1000 British Pounds for a nuclear medicine test, which in the context of the US health system is borderline hysterical.)

Food $350.00 (Unless your wife, like mine, is a Foodie, then triple this)

Transportation $350.00 (Contrary to popular belief they don't have cabs in London. They have people who will kidnap you, transport you, and then release you once a ransom has been paid.) This does include to and from Heathrow.

Kitschy Souvenirs $100.00 This includes a t-shirt that says "Mind the Gap" and a poster that reads "Keep Calm and Carry On".

As for being out of work for a week, I'm self employed so I can't really comment, and in any case it's subjective to each person's job.

Estimated total cost of Indium test in London: +/-$5000.00

This may seem like a lot to many people, but from my perspective your body is your most valuable asset, is the only thing you truly own, and this is an excruciatingly small price to pay for not losing an organ unnecessarily.

Best Regards,

KO

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Re:New to ITP, my story attached, have questions 10 years 3 weeks ago #20822

  • eklein
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I would also get the Indium test and am very very grateful I can afford it. I even asked my mom a few years ago if she'd come with me and she was up for it (maybe not anymore, but maybe). Thanks for providing the costs. My food costs would be high too - I'm a bit of a foodie.

I think most people can't afford it and that's a shame.
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 10 years 3 weeks ago #20937

  • KO27
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Update-

This just keeps getting more interesting, though I wish it wouldn't.

The Coombs test, and super-sensitive ("double-secret probation") Coombs test at Hopkins came back Negative, which I am grateful for.

However, my Absolute Reticulocyte Count jumped to 190 (90 is high normal) and, of course, my LDH is also elevated 50% above normal.

My Hema at Hopkins feels these are markers for Evans because of the hemolysis, but obviously things aren't lining up perfectly for that theory because the Coombs test is negative.
In any event, he appears to think there is something happening and that it's just a matter of time before it presents itself.

I'm not very excited about this.

I've asked for more research into what could be happening, and in the meantime I've been advised to take 1 mg of Folic Acid per day to try to limit the hemolysis.

I had thought we were getting down to decision time for a splenectomy, but this has thrown a bit of a wrench in the works. I'm a little reluctant to have that surgery when my physicians have less of a grasp on my condition than I'd previously thought.

I'll probably wait a little bit now and see if either of my Hemas can more closely identify what is actually happening.

Grrrrrrr...

After a year and a half I probably shouldn't be surprised that nothing about ITP is very straightforward, but it's still frustrating.

KO

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Re: New to ITP, my story attached, have questions 9 years 11 months ago #21867

  • KO27
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Hey everybody, I hope you're doing well. I should have some interesting news to report in the near future, but for the moment I thought I'd share something I came across.

I'd heard on NPR of a government website with the URL www.clinicaltrials.org and did a cursory search for ITP.

Two trials came up, one dealing with either Nplate or Promacta which was kind of old news, and the other was this one:

clinicaltrials.gov/ct2/show/NCT00511147?term=ITP&recr=Open&state1=NA%3AUS%3AFL&age=1&rank=1

It's a study that is still recruiting for ITP patients of both sexes and all ages, and appears to be evaluating a variation on IVIg called IGIV.

This may be old news as well, but as it's new to me I thought it would be worth mentioning. I'm not advocating it; just putting it out there.

Take care,

KO

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Re:New to ITP, my story attached, have questions 9 years 11 months ago #22468

  • KO27
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Sandi and Erica (or anyone who knows),

Do you know of any links between c.diff and ITP?

I just discovered that a lot of the symptoms I'd associated with prednisone have, in fact, been caused by c.diff, which I was just diagnosed last night after a hospital stay. I was hospitalized because I started getting very serious pain in my stomach and the endoscopy I had a week ago in trying to determine the cause came up normal.
The hospital did a dual contrast CT scan of my abdomen and pelvis which came back more or less normal (slightly enlarged spleen and presence of an accessory spleen, which I think of as a "buddy spleen").

Now here's the kicker; one of the ways c.diff blooms is when you take a certain (wiki it) antibiotic which targets and eradicates competing bacteria in the stomach, leaving c.diff with a big opportunity.

It's possible this was an unintentional side effect of treating h-pylori prophylactically last year with the standard triple antibiotic cocktail. For those of you that may not know, h-pylori is a possible cause of ITP in a small number of cases and according to a Japanese study, has been successfully and permanently treated by eradicating h-pylori in the stomach.
Also, because the gold standard for h-pylori diagnosis is a stomach biopsy, it's easier to simply treat it with antibiotics than confirm a diagnosis.

So what I'm really trying to discover is when I might have been infected with c.diff, if it's possible I got it from taking a pre-emptive strike against h-pylori, and most importantly, if it predates my ITP, it is a potential cause of ITP?

I would love for anyone with knowledge to weigh in and I thank you for sharing.

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Re:New to ITP, my story attached, have questions 9 years 11 months ago #22483

  • Sandi
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KO:

I would definitely agree that C Diff could trigger ITP in a predisposed individual. Any viral/bacterial infection can trigger ITP. However, it seems that in your case, you treated H Pylori after you were diagnosed with ITP, therefore, the antibiotics that you took for H Pylori could have caused the C Diff after the fact. I also thought that C Diff occurred fairly quickly after antibiotic use, like a few weeks at most.

I am familiar with C Diff. I've never had it but do know people who have. I hope you recover soon!

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Re:New to ITP, my story attached, have questions 9 years 11 months ago #22490

  • KO27
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Sandi et all,

Thanks. It appears I may have asked my question a bit naively as my Gastro has today assured me that there is no way I could have had c.diff for any length of time at all, so basically there could be no association with ITP.
Until today I didn't realize this and took a guess that perhaps c.diff could cause ITP as h-pylori has in some cases. However, as h-pylori is a slow burn, c.diff is somewhat more spectacular from a biological point of view and refuses to be ignored.

Back the drawing board on that note.

I do think I will be following up with everyone in about a week with some pretty good, and interesting news so please sit tight.

Night

KO

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Re:New to ITP, my story attached, have questions 9 years 11 months ago #22492

  • Sandi
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I'd love to hear some good news and I trust that you will keep it interesting!

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Re:New to ITP, my story attached, have questions 9 years 4 months ago #27690

  • KO27
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I'm back! :-)

I have a lot to say, and will probably publish a substantial post tonight or perhaps very early Sunday morning (more likely).

I hope you have all been well- talk soon.

KO

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Re:New to ITP, my story attached, have questions 9 years 4 months ago #27691

  • Sandi
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Looking forward to it. You always seem to pop in just when I start wondering about you!

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New to ITP, my story attached, have questions 9 years 4 months ago #27722

  • Mlubas
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Hi. I was newly diagnosed in July with a platelet count of 57000. After tests treatment started with ivig in August. Platelets were 26000 and fell to 7000 in a week. Had another ivig and platelets rose to 55000 but fell in owe week to 15000. Had another ivig, platelets rose to 62000 but fell to 25000 In a week. Had my first rituxan treatment 5 days ago. When platelets hit 19000. I know my platelets are low as I have 2 blood blisters in my mouth and some pittechia I get another rituxan treatment this week. I am also coming off of prednisone which did nothing. It is nice to know I am not the only one out here

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New to ITP, my story attached, have questions 9 years 4 months ago #27795

  • KO27
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Mlubas- There are some things that happen to people like an avalanche; trauma, getting diagnosed with stage 4 anything, etc., but in my two years with ITP I can tell you my experience has been more of a marathon. It's about endurance, research and perseverance, and not about quick reactions and sudden decisions.

I'm sorry to hear about your case, as I am about anyone's, so I'll share a few quick pieces of advice before I continue my story:

1. See more than one Hema. Especially before making any irreversible decisions. Ask doctor friends, or friends of doctors to ask for you, for references.
2. Get serious health insurance- you will need it to fight this effectively. You don't want options off the table because "Insurance doesn't cover it". I have an Aetna group policy through my own small biz and I never regret the premiums even though they are mortgage-like.
3. Do the things that offer permanent potential first- Pulse Dex, then Rituxin if Dex doesn't work, and get checked for H.Pylori while you're at it.
4. Go to England for the Indium test. It's the best $1000 you will spend in your life. DO NOT consider a splenectomy without knowing the results of this test.
5. Be goddamn careful if you try WinRho. Make sure your Hema knows what he's doing and stay in his chemo room or whatever for at least the 6-8 hours after the bag is finished. Hemolytic reactions suck and can kill you.
6. My Hema at Johns Hopkins told me that IVIg wasn't a treatment; it was a bridge to a treatment and shouldn't be used as a regular treatment unless necessary. I say this having used it as a treatment, but there are risks to all this stuff and sooner or later that will become apparent.
7. It's about balancing risks; when you get the point where the treatments are riskier than the disease, it's time to call time out. It's funny, but Pharma companies don't have to abide by the Hippocratic oath. "Yes, lifelong dependency on our brand new drug can raise platelet counts in some people, providing you take it 3 hours before food, not containing dairy products on every second Tuesday of each month on the Mayan calendar. Oh, and you may grow a third ass cheek or something, but you'll definitely have only a moderately unsustainable platelet level instead of a completely unsustainable one" - GSK Cares
8. ITP Sucks, but it's not cancer. I mean this. My Hema is also an Oncologist and consequently when I visit, I'm the only person there not actively dying at an accelerated rate. So don't feel sorry for yourself. Seriously. It's not cancer so don't you dare act like it is. It won't help you and it won't help anyone around you. Suck it up, find the strength, and try to make it as invisible as you can to your family. I sure as hell don't want my kids growing up thinking they have or had a 'sickly' father. What they know is that I don't race cars anymore, I wear a bicycle helmet now, and I'm more physically conservative than I used to be.
9. Have ALL the tests- Reticulocytes, Immunoglobulins, etc. Rule everything else out. Evans, CVID, Hep C, every damn thing that ITP could be secondary to. Have all the scans to rule out any possible lymphomas, and Lupus as well. You do NOT want to be fighting 'Thug #1' when you should be fighting the Joker himself.
10. That's about it. Actually, probably not, but those are the highlights. If/when I remember anything else significant I'll add to it.
Now it's gotten so late that I'll have to continue my story tomorrow night, but I hope this helps in the meantime.
Night,
KO

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New to ITP, my story attached, have questions 9 years 4 months ago #27864

  • KO27
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I'll start at a high point; when in London for the Indium test last November (2011) my platelets hit 97K, ninety days after completing my first, and so far only, dose of Rituxin.

Even though this was a slow reaction, it can't really be attributed to any other treatment or therapy. Rituxin was the only thing I was trying at the time.

My hopes were high, but two weeks later at my next test I was to learn that 97K would be my apogee as my count fell, at first into the 80s, then 70s, and for a while, holding at 49 or so.

I had been "drug free", meaning not taking any additional treatments since that initial dose of Rituxin for seven months or so when I was diagnosed with c.diff in late February of this year.

Subsequent to that my platelets dropped to +/- 35K, where they have remained for five months.

During this time I recognized that I was getting sick very easily where I used to be the last member of the family to get sick. In fact, it began to be concerning enough that I asked my local Hema about it and he suggested an immunoglobulin test. The results were about two thirds of low normal for most of my immunoglobulins.
We discussed it and he reminded me that, obviously, the net effect of Rituxin is similar to steroids in that it decreases the efficacy of my immune system, thereby slowing the rate at which platelets are destroyed and therefore increasing the number of platelets I have at any one point in time.
Rituxin giveth, and Rituxin taketh away.

All of a sudden I became very ill at ease with Rituxin. I understand it's place, and it's importance, and the level of respect my Hema has for it in his Oncology practice. Perhaps it was naive of me, but I didn't really understand that Rituxin was going to stunt my ability to fight colds, viruses and infections for a whole year.

That was a bit of an epiphany. Pred, Dex, Rituxin, etc. work by hobbling your immune system. N-Plate and Promacta take the opposite tack by stimulating platelet growth. However, reading the black box warning on Promacta is just as appealing as six extra weeks of colds were last year. It's hard to imagine how they reconcile "first, do no harm" with black box warnings.

So I started to think about it a little deeper. I thought, wow, I'm to the point that I'm starting to hurt myself with treatments. I mean, WinRho absolutely almost killed me. Game over. Never see your kids again. Really scared me.
Then Pred makes me some broken mirror version of myself, and Rituxin literally means six weeks of really horrible colds and becoming jumpy about other people's sneezes and coughs.

Hell, if I can see this stuff plain as day, what is it doing to me inside?, I wondered, louder and louder to myself.

I knew my reticulocyte count and my immunoglobulin counts were low, and I knew (or at least hoped) that the medicines were at fault and not my ITP because as long as I could stay treatment free I could expect those numbers to come back to normal, to homeostasis, sooner or later.

But, I thought, what is it doing to me to have my blood chemistry fouled for long periods of time? What else in my body uses reticulocyctes and immunoglobulins besides what I was aware of? This line of thinking made me feel as thought the state of modern medicine isn't that modern at all.

Meanwhile, in the absence of treatment my platelets have remained, with uncharacteristic consistency, at about 35K.

35K is ITP purgatory. Not low enough to demand (or want) treatment, but not high enough for many physical activities, even if I'd had the energy for them. Which I didn't. Very odd limbo to be in. So what is there to do, except wait?

Well, I thought, I know that physically I'm now spent much of the time, leaning on a Red Bull for a pickup. This is interesting because while Coca-Cola, which I've drank for a pick up through most of my life, wouldn't do it for me, and a cup of coffee would drive me up the curtains, a Red Bull frequently feels like I'm replacing a missing puzzle piece. Funny little coping mechanism.

So, I'm physically spent, but where am I mentally? Have I lost a few steps. This is potentially critical information as I've not gotten anywhere in my life by lifting heavy objects, and if even a little of my capacity is diminished I need to know in some objective way.
I started looking for online brain tests and before too long I came across Lumosity.com, which is online brain training; more or less a daily gym for your mind.

I joined Lumosity around April, and I was initially underwhelmed when I looked at my percentile rank, which was, I think, in the 25% range. I've never been in the 25th percentile in my whole life, so as humbling as it was I decided I had some work to do.
I participated on the site regularly for 2.5 months and my scores steadily improved until I maxxed out my score by getting to the 99% for my age group. As there are hundreds of thousand of users on Lumosity I felt this was a legitimate acknowledgement that, mentally, I hadn't lost a step, which erased some sincere anxiety I'd been feeling. My head was still all there even if my body wasn't.

Next, I had my Reticulocytes re-tested. You might remember the Hema at Hopkins all but told me that he thought I was heading for Evans Syndrome, as my reticulocytes were quite down both times I was at Hopkins.

I had them tested again in the middle of Summer, mostly because I had run out of the Folic Acid pills he wanted me to take. Well, the Reticulocyte test came back completely normal for the first time I can remember! No more Folic Acid, no more threat of Evans!

My immunoglobulins continued to test low, and being tired of treatments and tired of getting hurt by treatments, I began to more seriously consider a splenectomy.

To be continued...

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New to ITP, my story attached, have questions 9 years 4 months ago #27895

  • Sandi
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KO:

Thanks for the update. Interesting. Just a question though....if you are concerned about impairing your immune system on a temporary basis with treatments, why would you consider impairing your immune system permanently with a splenectomy? I am not disputing that Rituxan can impair the immune system, but I had all four infusions and did not get sick any more than anyone else did. It really only destroys B cells and T cells, which are lymphocytes (one of five white cells). You still have a lot of immune system left.

As for Red Bull..... abclocal.go.com/wls/story?section=news/health&id=6328046
Definitely bad for you. Some people with ITP are more prone to clotting, so I'd be careful with that.

I assume you post here because you want feedback. If that's true, you're going to get it. I know I sometimes seem like Chicken Little, so consider me the Black Box Warning of the PDSA.

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New to ITP, my story attached, have questions 9 years 4 months ago #27902

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Sandi- thanks for sharing. I've given this a lot of consideration, and while I haven't made my mind up yet, I'll offer my thoughts. I did want to say that my 'to be continued' from last night was meant to be just until tonight, as I have a lot more to share, though I didn't exactly make that clear.


First (and correct me if I'm wrong), but my understanding is that a splenectomy won't necessarily make you more susceptible to catching illnesses, but can make it much harder to fight them when you get them. For example, I don't believe you're more likely to catch a cold than anyone else, but in the event you do and it transitions to pneumonia, the result can be worse. In writing that I can agree that it doesn't logically follow, but that's how it was explained to me. Anybody care to clarify?

I can tell you that my immunoglobulins were down across the board after Rituxin and that my local hema directly attributed it to the Rituxin, though that again is no guarantee of a causal relationship.

That was a good appetizer, but here is the main course:

Splenectomy, and my case for it:

1. My quality of life at 35K platelets, even in the absence of requiring treatment, is suffering and I'm missing opportunities with my kids, etc. that I won't get back.
2. In the beginning of this odyssey I used to think that the available treatments, in lieu of a splenectomy, were without great risk or consequence. That was obviously naive, and I got over it. What took me a little longer to grasp was the cost of 'existing' with a barely adequate platelet count (35K or so). I actually feel like I'm aging prematurely because I'm perpetually too tired to work out, jump on the trampoline with my kids, do anything for very long, etc. I'm 43, with a 33 y/o mentality, trapped in a 63 y/o body. It's pretty frightening to consider what kind of 63 y/o I'll actually be. The reality is that in the absence of significant exercise, my body is suffering just as if I were experiencing side effects from a treatment. I'm basically suffering side effects from the absence of a treatment, if that doesn't sound too ridiculous. The way I look at it is that if I were on some sort of treatment, say Promacta, and it raised my platelets to 75K, I would have to deal with the side effects of the medication, but offsetting that I would likely have the energy to work out strenuously and consequently be in better health.
That being said, everything (inaction, treatment, splenectomy) comes with a cost and a benefit.
3. The very best report I've read on the subject so far (bloodjournal.hematologylibrary.org/content/120/5/960.full.pdf+html) indicates that the "cost" is roughly equal between treatment and splenectomy in that there appears to be no long term difference in mortality rates (i.e. lifespan) between ITP patients on long term treatment vs those with successful splenectomies, thought they do admit this result does not include data from the newer novel agents (n-plate, promacta). This satisfies a long term concern I've had. I had accepted that a splenectomy wouldn't likely affect my near term mortality, but I've always been concerned about my ability to get from, say, 73 to 83 years of age. Would a splenectomy be a significant health impediment later in life? The reports says no more that continued treatment would be, and I'll further extrapolate that to mean that it's also not worse that not being treated but not getting proper exercise.
4. The mental aspect is very real. I feel limited. Very limited. I consider myself to have a lot of mental fortitude. I've never been sedentary and have always been engaged in high performance activities; I've raced cars, visited 35 countries, run a marathon, was part of the 2/20th Special Forces Group in the army (Intel, not actually a Green Beret; I like to clarify that), I freefall skydive, and I have been an assistant scuba instructor. I'm not bragging about anything; I just trying to express, objectively, that when I explain that I feel limited and prematurely old, that it's not a mental block; it's an objective physical limitation. And if I'm being honest, I feel like it's reducing who I am and what my opportunities are. I want my life back.
5. I've had the Indium test performed. My platelet destruction is "largely sequestered in my spleen". The probability of success for a splenectomy is 87% at this point. This figure, which a friend and I worked out a year ago was interestingly reproduced in the report I cited above (I was going to ask for credit...), so aside from patting myself (ok, I have a journalism degree, so it was really my buddy the accountant/economist) on the back, this means a splenectomy should work.
How important is the Indium test? Well, it reduces the likelihood of failure by nearly two thirds, from 33% to just 13%. How significant is this? Without the Indium test, one in three fails. With positive results from the Indium test, only one in nine fails. Statistically that's huge. Or so I'm told.
6. The upshot for me, personally, is that I should get my 'life' back; i.e., my energy, my positive outlook, shared experiences with my kids, my ability to (for the most part) control my physical well being with exercise.

This is the philosophical conversation I've been having with myself and while I haven't yet made the decision yet, I'm getting closer.

I still have a lot to go over, but as long winded as I tend to get I'm again almost out of time.

Sandi, back to the Red Bull- I'm sure there's more to the study than what was published, but I can tell you that 30 kids is probably an inadequate size for a legitimate study, and while they did say their blood was syrupy or what not, they didn't disclose if there was any clinical significance. Also, they were testing them with the Red Bull Sugarfree, which I've never drank. But you piqued my curiosity and I will look into RB's safety now as it is a guilty pleasure, besides being an occasional 'therapy'.

And you bet I post because I want feedback. I've learned so much from the forums here that I like to both give back and continue my own education, so I welcome anyone to write.

More in a day or two--

KO

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New to ITP, my story attached, have questions 9 years 4 months ago #27923

  • Sandi
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KO:

I think your points are valid and I can understand you wanting your life back. Everyone wants that and some do achieve it. We all make decisions based on lifestyle and needs. Nothing wrong with that. You have to do what you have to do.

I do think the Indium is a great tool for making the splenectomy decision. It will, if anything, at least weed out the people who should not get it done. In your case, the outcome seems to be positive. The only wrinkle in this is that things can change in time. Destruction could begin to take place in the liver and that could occur weeks, months or years after the surgery. Only you can decide if it would be worth it. Your 87% success rate sounds great, but you have no idea of how long that will last. No one can predict that.

The problem with splenectomy is that if it fails, a person may have to go back to the immunosuppressant route, which makes them more susceptible to illnesses and the ability to fight them. Definite point to ponder. Also, research has also shown that being asplenic can raise the risk of blood clots. Add that to N-Plate or Promacta, and you may have another battle to fight. We have had a recent influx of people having strokes and DVT's (with high counts and low counts, young and old). There isn't much in the research articles about that; those things become the problem of doctors other than hematologists.

You're right, there aren't any really good answers to this. You're trying to solve it like a Rubik's cube, turning it over and over and lining it up. That's great! It's better than jumping into decisions without much thought.

You are right about your understanding of illnesses and splenectomy. You shouldn't get sick more often but if you do, it can be serious pretty quickly. The articles I have read over the years have stated that the mortality rate from infection is slightly higher than the mortality rate from bleeding.

I do agree with you about treatments. I know that they can cause damage. I can't even begin to list the problems I have/had from Prednisone, Rituxan, Methotrexate (for ITP and another autoimmune disorder). Mostly rare things, but I seem to attract that sort of stuff.

And last, Red Bull. If you search it, you will find many articles about it. It's been on the news a few times. I yell at my adult kids if I see them with one of those energy drinks.

Good luck with your decision.

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