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Re: New to ITP, my story attached, have questions 10 years 4 months ago #18584

  • KO27
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Here is a dialogue that I had with my Hema from Hopkins on the safety of Promacta:


Dr. XXXXXX,



I’m sorry to trouble you and I hope you don’t mind me making an inquiry. I am wondering if you would weigh in on the following:



I had a CBC today and met with Dr. ZZZZZ. My platelets today (two weeks after completing Rituxin) are just 18K on 20mg/day Prednisone.



Visiting you on October 27th is the next significant event in my treatment/evaluation.



Dr. ZZZZZ has asked me to take 40mg/day Prednisone to get my platelets up, but has suggested I go on Promacta instead of staying on Prednisone and increasing the dose because he is wary of it’s effects.



I am open to this, for the short term, but my wife and I were reading about the side effects and risks of Promacta and, to be honest, when I was skydiving I didn’t have to sign anything like what I have to sign in order to be able to take Promacta. All of the precautions which need to be observed seem to indicate that the drug is, at least, questionable.



I haven’t considered it previously solely because it was new and relatively untested, and for these reasons I didn’t want to get into long term use with it. My initial thought was that it would be safe for the short term between now and a prospective splenectomy, but now I’m not even sure of that.



Having said this, considering I’ve been on Prednisone for four months (doses varying between 50/mg and 15/mg/day), which is the better option for the next 2-3 months, Prednisone or Promacta?



I sincerely appreciate your consideration,


REPLY from Dr. XXXXX at Hopkins:

We have had good short term luck with Promacta, applied at lowest dose to get platelets in safe range , allowing decreased steroid use.


>Man of few words, I suppose, though he did address my question satisfactorily. I do believe from my previous conversation with Dr. XXXXX that he's a bit wary of long term use, but it appears, at the very least, that short term use may be a good option. I'll probably start Promacta this week. I will let you know my experience with it.
With all of the different drugs/treatments I've tried I'm beginning to feel like an ITP Crash Test Dummy. Or a perhaps a Medevil food tester. :-)

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Re: New to ITP, my story attached, have questions 10 years 4 months ago #18586

  • KO27
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More Info. This is what I received back from the hospital in Barcelona (listed on the PDSA site) which is one of the institutions currently performing the Indium test. I though this might be useful to publish:



Dear KO,


Our method do not differs substantially from the other methods used by our colleagues in Paris and London. We have recently reported the reliability of one of the parameters to predict the success of a splenectomy. However, we also obtain and study other parameters from the whole test, just as do other colleagues.

The test involves the following steps:

Day 0 (Tuesday):

Extraction of about 70 ml of blood. Preparation of labeled platelets with 111In. Reinjection of labeled platelets.
Extraction of 3 ml of blood at the following times: 30 min, 2h, 4h and 6h
Imaging of the heart, spleen and liver at 30 min with the gammacamera (anterior and posterior images).

Days 1, 2 and 3:

Extraction of 3 ml of blood

Imaging of the heart, spleen and liver at 30 min with the gamma camera (anterior and posterior images).



Depending on the preliminary results obtained until day 3, you may need a new blood extraction and gammacamera images on day sixth (Monday). This possibility is rare in our experience



We are currently waiting for our hospital medical direction tells us what are the requirements you need to take the test in our department, and the cost of it.

When we have these data, we will immediately contact you.

Sincerely Yours,





Manel Roca, PhD

Radiopharmacy Unit

Nuclear Medicine Department

Hospital Universitari de Bellvitge

c/ Feixa Llarga s/n. 08907-L'Hospitalet de Llobregat (Barcelona)

Tel 34 93 260 76 20

Fax 34 93 260 75 16

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Re: New to ITP, my story attached, have questions 10 years 3 months ago #18815

  • KO27
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Question for anyone out there- I saw this on the Wikipedia ITP page and am curious if anyone knows any more about it?

Promising results have been reported in a small phase II study of the experimental kinase inhibitor tamatinib fosdium (R788). In a population of 14 patients refractory to other treatments (ten of them having relapsed following splenectomy), nine responded to tamatinib and six achieved platelet counts greater than 100,000.[37]

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Re: New to ITP, my story attached, have questions 10 years 3 months ago #18816

  • Ann
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R788 is owned by Rigel and is what is called a Syk Inhibitor mostly used for RA and some cancers including B Cell lymphomas, so a bit like and oral rituxan I suppose knocking out the b cells. It's still in trial.

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Re: New to ITP, my story attached, have questions 10 years 3 months ago #18837

  • 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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Re: New to ITP, my story attached, have questions 10 years 3 months ago #18851

  • Ann
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Okay I actually looked it up this time.. LOL.. and this gives us an idea as to how it works..

www.ncbi.nlm.nih.gov/pubmed/19333898

"Rigel Pharmaceuticals Inc is developing fostamatinib, a prodrug of the spleen tyrosine kinase (Syk) inhibitor R-406, for the potential treatment of autoimmune diseases such as rheumatoid arthritis (RA), idiopathic thrombocytopenic purpura (ITP) and B-cell lymphomas. Syk is a key mediator of Fc and B-cell receptor signaling in inflammatory cells, such as B-cells, mast cells, macrophages and neutrophils."

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19591

  • KO27
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Lots to update-

Hello everyone and thanks for reading. Quite a bit has happened and/or will be happening shortly, so I thought this would be a good time to update the thread.

As reported, I did a course of Rituxin late in the Summer to no apparent effect.

The follow up plan was to switch from prednisone to Promacta as the side effects of 30mg/day prednisone were starting to get to me.

This was an adventure in and of itself because the even with my Aetna group insurance policy, the original quote for my copay was $1300.00. Prednisone, as you might know, has a $5.00 copay.
After I picked my jaw up from the floor, I discovered that the manufacturer of the drug, Glaxo SKB (I think) has a website to let you know they care, conveniently located at something like Glaxocares.com. I doubted that they actually cared, but I nevertheless filled out some paperwork and 24 hours later received a call that my copay had been reduced to $50.00. So apparently Glaxo really does care. Or they really, really, really want their drug to catch on. Not sure which, but not complaining.

So, Promacta arrived the next day via UPS and came with a receipt for $4,000.00. For a one-month supply. It's fair to say that between IVIG and Promacta, Aetna hasn't made much on our family in a while.

I waited the three days until my next doctor appointment to begin taking Promacta. Funny how when you have chronic ITP you're never more than three days from a doctor appointment.

To my surprise, Dr. Z announced that my platelets were at 56K, solely on my standard 30/mg/day of Prednisone. Neither of us wanted to suggest that the Rituxin was having and extremely latent effect, but nevertheless Dr. Z said to drop to 25/mg pred and see what happened.

Oh, and to not take the Promacta just yet.

So I did, and the next week my platelets were at 60K. I again dropped the Prednisone, this time to 15/mg/day and my platelets continued to rise, now to 66K.
I reduced my dosage all the way to 10/mg and my platelets finally dropped to 42K, but what is significant is that previously I needed 30mg or even 40mg to keep my platelets at this level, whereas I'm now able to do it with 10mg.
Neither Dr. Z or myself really have anything to attribute this to, but something, and quite possibly the Rituxin, has had a positive effect.

I now have a $4000.00 bottle of Promacta (and another on the way shortly) just sitting next to the Advil bottle in our medicine cabinet. Again, not complaining. As they say, these are the kind of problems you want to have.

The only oddity is that I'm bruising up like I got caught in the wrong part of the LA Riots, despite not knowing why. What is specifically odd is that I don't normally purple-up until I get into the low 20K's, so it's new thing to get bruises in the 40K to 50K range.

Again though, not complaining. This is good news and hopefully more will be on the way soon, as I'm leaving for England on Sunday (9/13) to have the Indium test performed!!!!!!!!!!!!!

Only caveat: "Mr. K, please be aware that you will not be able to fly the same day as the final test."

Me: "Uh, ok. Is this because of potential side effects, or because you don't know how long the test will take?"

UK Hospital Lady (dry British accent, as if explaining something terribly obvious): "No Mr. K, You will be radioactive. You wouldn't be able to get through the airport."

Nifty. However, if my friend the economist did his sums correctly, having the Indium test performed should increase the probability of a successful (yeah, I know, how do you define success?) splenectomy (assuming platelet destruction is determined to be in my spleen) from 65% to 87%, which from a statistical perspective is all the difference in the world.
I still cannot get my head around why we don't have this test in the U.S. If anyone knows, please tell me.

I have a lot more to share, but I'm starting to feel the pot I've begun smoking to offset the effect of the Prednisone at night. To be continued...

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19593

  • Ann
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Nice report. The bruising is easy, prednisone thins an inner layer of skin and causes it. I had awful purple bruises at a high count from the pred.

The radioactive thing is funny because they told me that it was fine and no ptoblem to me at all and yet they steered me to a separate waiting room and had a separate toilet for us which all felt a bit creepy.

Good luck with the test. Are you having it done in London? The splenectomy success rate for me fell from the 65% to less than 16%. Needless to say I haven't had a splenectomy.

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19595

  • Melinda
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You are on 10mg of prednisone and it causes you problems at night?

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19596

  • eklein
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about 4 years ago I had my thyroid ablated with radiation. I was warned that if I traveled in the next few months I might get noticed by radiation detectors at airports and if that happened to just explain the medical procedure I had.

So about a month later I traveled from the US to Nassau, Bahamas. I got through two US airports with no problems. On the way home I was stopped at the Nassau airport and asked about if I had been exposed to radiation. I explained and they made a note in my record (whatever that means) and I had no further problems.

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 2 months ago #19597

  • KO27
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Good question. I have, up until very recently been taking between 30mg and 40mg of Prednisone per day. In the beginning I took this in the morning, but I recognized pretty quickly that it was throwing my days off- making me irritable, etc., so I made a decision to take it at night and hopefully sleep through the worst of the effects.
This has generally worked, but it's cost me a cracked tooth (jaw clenching), some night sweats, and I do require some additional help to fall asleep/stay asleep. I've never taken sleeping pills, or any pills really, in my life and I didn't want to start now, so I went a less (or possibly more) conventional direction in that regard.

Things are markedly better on 10mg of Pred, but it's still not easy to sleep shortly after taking it. Perhaps it's my weight- I'm male and only weigh 145 lbs., so it perhaps has a greater effect on me than a 225 lb person. Just guessing here.

I am really looking forward to getting off steroids all together, and this is one of the reasons (along with just plain running out of alternatives) that I'm considering a splenectomy. It seems as though the cure, or rather, treatment, is as bad as the problem. One of my original points in writing this thread is that uniquely, ITP seems to only have exclusively dismal treatment options. There are no good choices. This is hard for me to fathom because I'm kind of a "plan C" guy. I generally do whatever other people are not doing, and make my own solution, but if there's a trap door here I have yet to find it.

So, in lieu of a satisfactory resolution (this would include keeping my spleen) the next imperative is to tilt the existing options in my favor as much as possible, and that is the idea behind the Indium test.

Again, to be continued...

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19605

  • Sandi
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Well, I'm glad you are finding and sharing some humor here. You're moving along, KO!

The Indium is not used in the U.S. because it hasn't really been a reliable predictor of success. Remember, it can be used to predict failure if destruction is not found to be in the spleen. But even if destruction is in the spleen, that does not mean that the splenectomy will be successful. You have to also determine what 'success' means. It could be a week, a month, a year or forever. There are very few statistics about that. Try to find some - you probably won't. I really wish the articles that were written about it would spin that perspective properly.

ITP isn't the only disorder with no clear answers. In fact, I was just thinking yesterday that ITP is one of the few autoimmune disorders that can usually be managed and has so many treatment choices. Since I was diagnosed in 1998, they have added so many new options. That's not to say that any of it is easy, but you can move on down the line and eventually find something that keeps you safe and able to function.

Good luck with your trip....it will be interesting to see what you find out. Please let us know when you can!

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19735

  • KO27
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In London, at Barts and The London Hospital for the Indium test.

The staff could not be nicer or more accommodating, and I feel particularly at ease with the procedure now. You never know if you are going to be treated as a lab specimen or a human being at any given medical facility and I'm happy to report that the staff is virtually tripping over themselves to be helpful.

Ok, so time for some more good news before I go into the Indium test; my blood platelet measurement on 11/11/11 was a rather astonishing 87K on just 10/mg/day Prednisone. After I picked my jaw up from the floor I asked Dr. Z what to attribute this to, and he raised his hands, smiled warmly, and said he had no idea.
More specifically, what he meant was that there was no way for him to determine if this was an extremely latent reaction to Rituxin, or if I'm having some sort of spontaneous remission.

He was ready to lower me down to 7.5/mg/day of Prednisone, but I said that because the Indium test required that I have a minimum of 30K platelets that I'd prefer to be extra safe and stay on 10mg until the test was over.

It gets better. Today, as part of the first phase of the Indium test my platelets were drawn and I had... 97K!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Holy cow. I almost broke down in tears. Tears of joy. I understand it may well not last, and it could be due to just about anything, but honestly when you're the one with the gun to your head you don't really care why it goes away, as long as it does.

I'm at a bit of a loss for words (all evidence to the contrary) and I'm simply grateful for the possibility of a remission.

That being said, I am still going through with the Indium test, just in case things turn for the worse.

I was supposed to have the first phase of the test today, but my blood apparently did not 'spin up' quite the was the (very nice) doctor wanted it to- I had a great number of red blood cells, but apparently my plasma and platelets did not separate enough (or something like this), and the doctor assured me this was not 'clinically significant' and that it happens in about 5% of cases.
So, I go back tomorrow to try again, with the understanding that it would be extremely unlikely that it would happen twice in a row.

I haven't seen a great description of the nature of the test on the forums so I will try to provide a detailed explanation of the procedure once I have it. Apologies to anyone that has provided a good description of the test, I have missed it if one has been provided.

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Re: New to ITP, my story attached, have questions 10 years 2 months ago #19749

  • Ann
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Welcome to London. I imagine you're at Barts. When I did the test, the first bit was done at the Royal London and then I had to hot foot it by tube to Barts for the rest but I think they do it all at Barts now.

Hope it goes well today.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20000

  • Sandi
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Hey KO - how did it go?

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20006

  • KO27
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Ok, so here’s the story of the Indium test at St. Barts in London:

I was told that I had to be on site at St. Barts on Tuesday morning, and with the five hour time zone push from the East Coast of the U.S. most flights for the U.K. take off in the evening and arrive the following morning in London.
This meant that we had to fly on Sunday to arrive Monday A.M. in London, as arriving Tuesday would mean missing the test.

Air travel tip: If you have to connect to a major airport for the flight to the U.K., it’s a good idea to have the location of this airport be closer to the U.K. than the one you departed from. Our outbound flight was from Orlando to Miami, then Miami to Heathrow. This made for a nine-hour flight. If I would have thought about it a little more I would have tried to connect out of Atlanta, JFK, or anywhere in the Northeast and would have had a much shorter transatlantic flight. But I digress.

So we arrived in London on Monday morning and made our way to the new Marriott Renaissance St. Pancras at Kings Cross. I’m not name dropping here; the hotel, despite being absolutely resplendent, was reasonably priced (for London) and is the closest Marriott to St. Barts at about 1.5 miles.
The hotel is actually a recently renovated train station, and it’s so large that we actually walked around it while looking for it, if that makes any sense. No, it didn’t have a big sign on it that said MARRIOTT in giant red letters (which, of course, is what we were looking for).
Definitely two thumbs up for the Renaissance.

My wife and I arrived Tuesday for my appointment only to find out that both Gamma camera machines (think MRI without the GA-DONGA, GA-DONGA sounds) at St. Barts had actually broken suddenly that morning. I don’t know what the odds of that happening were, but the staff took my baseline bloodwork and sent us away for a bit while they discussed what to do.
While waiting we discovered two things; that William “Braveheart” Wallace was put to death on the grounds of our hospital (presumably before it became a hospital) and second, that there is a great creperie around the corner from St. Barts.
On the ‘putting to death’ front, I should note that London is lousy with places where notable people were put to death. It must have been nearly a full time occupation in London back in the day. If I were a notable person several hundred years ago I would have probably avoided London like the plague (no pun intended).

When we returned to the nuclear medicine department we were told that my test would now start Wednesday and complete Friday (the free day we were going to use to see Oxford, the Cotswolds, and hopefully let the Indium fully decay before flying back).
This wasn’t so bad, but then we were informed that I’d have to have the test done at ‘the other’ hospital, The Royal London Hospital.
Calling it the Royal London Hospital is an insult to the throne, the city, and hospitals in general. The building dates to at least WWII but more likely, the Restoration. The RLH was like something out of a Hitchcock movie, all peeling (lead based) paint, broken doors, leaky pipes, etc. The Aadams Family Hospital, if you will.
Oh, and it’s in the hood; an area called Whitechapel. No, they don’t have guns, but if they did, this is where they would have them.

Now, in fairness, the reason that RLH appeared to have been functionally abandoned was that, essentially, it had been.
The giant, gleaming, glassy and new Royal London Hospital had been built immediately behind the existing one and will be opening I think next month. So, if it looked as though maintenance and upkeep had stopped on the existing building, it was probably a correct impression. The only problem, of course, was that it appeared maintenance and upkeep of the existing building had ceased in perhaps 1975.

Nevertheless, we were there on Wednesday and I received my Indium injection. Out of curiosity (and a sense of self-preservation) I asked if the staff could tell me exactly what a comparable dose of common radiation would be, in laymen’s terms. The absolutely wonderful doctor there looked it up and reported that it was far less exposure than even a dental x-ray, and was equivalent to the cosmic radiation one would absorb on 2.5 transatlantic air travel crossings. Yes, Irene, you get dosed on the airplane, which is something that pilots are starting to get very sensitive about as they get it even worse in the cockpit. Just so I don’t sound like a know-it-all, I’ll go ahead and admit I only found this out about a year ago myself, and only because I became good friends with a pilot.

So the dose is minimal, the half life of Indium is short, and your (my) total radiation exposure is slight. Tell this to customs. More in a bit.

After the Indium injection, bloodwork and a scan were performed at 1.5 hours and 4 hours from the injection on the first day. While I was waiting I did find out that my platelet count was 97K, a new record. The Rituxin from August really appears to have been working it’s magic.

The next day I reported to the RLH for another blood pull and Gamma camera scan, and I was done by 10:30 AM and we got to run around and do touristy stuff, which of course included touring English pubs. I had no idea there were several different varieties of Stella Artois and that they are all better than the one we have here. I highly recommend Stella Black.

What I don’t recommend is the godawful restaurant we ate in Thursday night; Dans Le Noir. It’s gimmick is that you eat in pitch darkness and are served by blind people, supposedly heightening your sense of taste by eliminating most other senses.
Nice theory, but in practice what happens is that in the absence of being able to read body language and possibly lips, everyone winds up talking extremely loudly. By the end of the meal the restaurant sound like a WHO concert and the poor waitstaff, who depend on sound to get around, were probably walking into walls.
It sound like being in an agitated beehive and despite being 5’7”, 145 lbs, and a Democrat, I was ready to assault the first member of management I came across once I was brought back into the light. It was a truly miserable, and expensive, experience. Just sayin’.

Friday was more of the same, with one blood draw and another Gamma scan, followed by a handshake and a goodbye from a very kind staff in a truly dismal building. But, ah, at least they have something to look forward to.

Results would come in a week.

More historical and touristy stuff followed, then a night’s sleep and on to Heathrow in the AM.

No drama until I got to U.S. Customs in Orlando. Approaching the armed agent in his pedestal booth, I noticed his beeper start to go off. Except of course, nobody carries a beeper anymore.
He proceeded to ask me a couple of random, genial questions and then asked if I’d had a medical test in the U.K.
“Wow,” I thought, “A lot of people must go to the U.K. for medical tests.”
Yes, I replied.
The agent then moved his beeper closer to me and it started going apeshit, with three different lights flashing and honking sounds calling out.

At first I thought “This guy’s beeper is screwed”, before realizing it wasn’t a beeper at all and thinking, “This really sucks.”

Yes, Irene, I lit up Special Agent Maldonado’s radiation detector like a Christmas Tree, and was invited to go sit in a special room with Vlad from Russia, three guys from China, and most everyone with a Middle Eastern passport.
Vlad had the look of someone who knew they were in for a long day, the guys from China looked confused (this room not being in their guidebook to Orlando), and the folks from the Middle East looked like they were used to it.

After a while I was called out of the room and had a radiation sensor of some kind stuck into my stomach. It apparently could determine what type of radioactive element I had been exposed to.
If it would have said Uranium or Plutonium you wouldn’t be reading this now (probably for more reasons that one), but fortunately for me Indium is apparently on the list of ‘good’ nuclear materials and I was allowed to leave.

My results arrived by email the following Thursday and I’m happy to report that the test identified my spleen as the source of my blood platelet destruction, which means I should have a +/-87% probability of success from a splenectomy.
As folks on this forum correctly remind, this ‘success’ is not well defined insofar as how much benefit I’ll receive and how long it will last, but at least it’s now a legitimate option.

I could not take a splenectomy seriously as an option without this test, and my personal recommendation is that you don’t either.
I think it’s an absolutely foolhardy gamble to have a splenectomy without knowing where your platelet destruction is actually happening because at least one in four people that have a splenectomy without this test receive no benefit at all, but endure the risk of surgery (1% mortality rate alone) and a lifetime without a spleen.
I think it’s criminal. If you care about yourself at all, get this test before seriously considering a splenectomy.

It’s not expensive- $1600.00 U.S. dollars, that’s it.

Here is the entire report I received, minus personal information:

INDICATION: Chronic ITP.

DESCRIPTION:

L/H S/H S/L

30 mins 1.82 16.39 8.99

3 hours 1.89 16.98 8.99

24 hours 2.35 25.14 10.71

48 hours 3.29 38.3 11.65

Half clearance time = 0.88 days
Platelets mean life span = 1.27 days
80% destroyed after 2.04 days

CONCLUSION: The findings support a largely predominant splenic platelets sequestration.

Follow up- upon returning to the U.S. I had another lab appointment with my local Hema and after dropping my prednisone to 7.5 mg/day, my platelets had dropped to 55K.
My energy level has stayed really quite high however and I’ve begun running for the first time in three years, and I’m optimistic that I might be able to get off prednisone altogether if the Rituxin’s impact continues.

This was obviously unanticipated, but I still would have (and did) go through with the Indium test because it’s hard to imagine that the Rituxin will give me permanent relief, but I am sincerely grateful for what I am getting, and moreso just to have some options.

If anyone has any questions about the Indium test, or anything else, please feel free to ask. I will be putting some questions about Rituxin responses out there once I get a better idea what direction it is going for me.

Thanks for reading, more soon.

KO

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20007

  • Sandi
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KO - it takes a lot to make me laugh because I have an odd sense of humor (or maybe none at all), but you had me rolling. Thanks for the very detailed description of the trip. I did find myself holding my breath waiting for the results, like you were going to announce the winner of Survivor or America Idol.

So how did they come up with 87% success? Are you going to have the surgery?

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20016

  • Ann
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I'm jealous you got to stay at the station hotel. It's just up the road from me and looks glorious. The RLH was opened in 1757 and I agree it shows. Down in the basement corridors it's just plain creepy but just imagine they were doing operations there long before anaesthetics, when the attendants were summoned by the ringing of the bell that is still there, for them to come hold the patient down. Joseph Merrick, the Elephant Man was also a patient there.

Your results are interesting and it's interesting to compare with mine which show liver sequestration. Have you had it explained to you exactly what the results mean? I know the column headings mean liver/heart, spleen/heart and spleen/liver and are presumably ratios but I never did really understand how it works. Do you know?

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20022

  • Melinda
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I enjoyed going to London with you via your post - brought back lots of good memories.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20027

  • KO27
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More news today; at least this isn't the kind of disease where you have to wait six months to find out what your condition is.

New bloodwork today shows my platelets up to 78K on just 7.5 mg/day of Pred. It was 97K in England, but dropped to 55K after I reduced my Pred dose, but has now rebounded for the second time. I am going down to 5 mg starting today and we'll see what happens next week.

To answer Sandi's question as whether I'm going to have a splenectomy, that will depend on what kind of a remission I continue to receive from Rituxin. If I can get off Prednisone entirely in a few weeks and have platelets in desirable range (I'm not complaining about 78K for example), then I will hold off on the splenectomy as you might imagine. I may consider a 'booster' of Rituxin along the lines of "If a little is good, more must be better", which I know is usually only true for sex, drugs and alcohol, but hey, Rituxin is a drug, right?
All kidding aside, my local Hema says this is a sound theory if managed correctly, but I will also check with my Hema at Hopkins to make sure he concurs. I'd ask if he agrees, but as a doctor he can only concur. :-)

Moving on- we arrived at the 87% probability of success through some statistical math. I have a journalism degree (go figure) so I had nothing to do with the math. A friend of mine with accounting and economics degrees did the sums.
We based this on a 65% native success rate for splenectomies in general when the location of the platelet destruction is not known, and a 25% probability of the platelet destruction being localized in the liver in the general population of ITP sufferers (sufferers? Is that what we are?).
I'm not going to try to explain the math any more than I would try to do it, but my friend arrived at something like an 86.8% probability of a successful outcome (up from 65%).
This in no way defines successful; it simply increases the likelihood of whatever a successful outcome is by eliminating the one-in-four chance of certain failure.

I am familiar with the knock on the Indium test that it can only predict failure, not success, but this isn't mathematically correct. It cannot predict success, but by screening out a very high proportion of those splenectomies that are certain to fail, the probability of success certainly rises.
To use an analogy, if you wanted to determine how many first graders would eventually graduate high school, the Indium test would essentially tell you how many were certain to drop out of school before graduation. The remaining students would be those that would graduate (success) and those that would stay in school but fail to graduate (failure). By removing the dropouts from the equation ahead of time, you are dramatically increasing the probability that any one of the remaining students will graduate. So I can't do math, but I have a black belt in analogies.

To answer Ann, as to whether I understand all of the other data on my Indium test report, the short answer is no, I don't.
I do understand the short half-life of my platelets, which is what defines ITP, but the other numbers are Greek to me (probably not accurate considering how poorly the Greeks seem to be handling numbers these days) but I figured I'd let Dr. House at Hopkins explain in to me next month.

Last, I have a question for everyone and I'd appreciate hearing what anyone has to say:

When it became apparent that Rituxin was working for me at some level, I asked my local Hema if there was any clinical significance between people for whom Rituxin works and for those it fails to work for.
He thought about it, and suggested that it could mean that for people who receive benefit from Rituxin, their ITP is secondary to another autoimmune condition, whereas people who fail to see benefit may have ITP as a primary condition. He was just theorizing based on how he interprets Rituxin to function in the body, so this isn't a concrete assertion, but just a guess.

My question then is, does anyone have any thoughts or experience with this? Has Rituxin worked for you and if so, were you ever determined to have another primary autoimmune condition? Has anyone ever suggested this theory to you?

Obviously I ask because, while I am grateful to receive benefit from Rituxin, it obviously makes me a little uneasy to think it may be because I have some as-yet undiagnosed autoimmune issue and I'm curious to see what other's experiences have been.

Best Regards and thanks for reading,

KO

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20028

  • eklein
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I think there might be something to the theory of Rituxan responders having secondary ITP, or maybe you are more likely to respond if your ITP is secondary to another auto immune disease.

I've had a full sustained response, my ITP is secondary to lupus.

Thanks for the great report and travel journal - I saw that weird dark restaurant on a tv show once. Too funny.
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 1 month ago #20029

  • Sandi
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KO:

I have definitely noticed over the years that those who have fantastic responses to Rituxan also have Lupus, or have Lupus symptoms such as fibromyalgia. A few others have had other autoimmune disorders. I have also noticed that those of us in this group quite often have had pretty nasty Rituxan side effects (such as serum sickness or a bad case of hives). These side effects may not always occur with the first group of infusions and might occur during the second, as if the sensitivity increases with additional doses (which is very possible). We seem to be the ones who have years of remission. I am almost able to predict who will eventually get a Lupus diagnosis based on what happens to them with Rituxan, or who will have a bad reaction to Rituxan based on the fact that they have Lupus. There should be a study on this since it happens often enough to warrant one in my opinion.

I have also noticed that some people who have had splenectomies have had longer remissions from Rituxan than those who have their spleens.

There are exceptions to both of those, of course. It's also just my observation, but I have been here nearly every day since 1998 and I do pay attention.

Rituxan caused my ITP remission, but was the beginning of Lupus for me. I had serum sickness that triggered Lupus and my life has never been the same since. I'd rather go back to dealing with ITP. Rituxan certainly has its place, but I do believe that it should not be overused.

It's too soon to say whether or not you've had a decent response to Rituxan. Even if you do, you may be one of the exceptions and fit into the "primary ITP" group.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20047

  • tamar
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KO, thanks for the trip report.

I'll throw out some of my opinions to your questions, which are worth exactly what you paid for them...

I've read that sometimes ITP is caused by b-cell destruction of platelets, and sometimes the destruction is caused by cytotoxic t-cells. Since rituxan depletes b cells, it might not have an effect on the t-cell related ITP. However, MS is a t-cell mediated condition, and rituxan has been used successfully to mitigate MS symptoms, so who knows?

More is not better with rituxan. Once the b cells are depleted, there's nothing left for the rituxan to do. There is an article on this in Haematologica (search on Drew Provan) for research that shows that even a very small dose of rituxan clears most b cells in patients who don't have cancer.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20048

  • Ann
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Maybe this one.. www.haematologica.org/content/92/12/1695.full

Here's another about low dose rituximab..
www.haematologica.org/content/93/6/930.full

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20051

  • Sandi
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Tamar - there have been articles that have stated that Rituxan also affects T cells. I think those were out a few years ago.

bloodjournal.hematologylibrary.org/content/110/8/2784.full

www.pdsa.org/itp-treatments/rituxan.html


I agree - with Rituxan, more is not better.

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20054

  • tamar
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Maybe this one.. www.haematologica.org/content/92/12/1695.full
l


Yes, Ann, that's the one!

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20076

  • ananta
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KO,
I wouldn't worry too much about the good results of Rituxan meaning another auto-immune disease. My first round of Rituxan gave me a 4.5 year remission. I finished my second round of Rituxan in August, so I am 3 months into my second remission. I didn't have any other auto-immune disease 4 years ago and I still don't have any other auto-immune disease. In fact I am on no prescription drugs for anything (high blood pressure, high cholesterol etc etc)) which my hema says is unusual for a 57 year old. B)

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20480

  • KO27
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Update- On 5mg/Pred/day my platelets dropped to 32 (after the previous count was 78 or so), so I had a midweek CBC to make sure I wasn't in freefall and they came back at 39.

My next regular appointment, which was yesterday, produced a 37.

So, curiously, the benefit of the Rituxin seems to have waned a bit, but I'm still stable in the mid-30's on very little Prednisone.

This leaves me in a little bit of a quandary. Perhaps my next appointment at Johns Hopkins on 12/22 will help clarify my options, but right now here is what I got:


1. Say the Hell with It and yank my spleen now that I've had the indium test and know the platelet destruction is localized there.

2. Say Wait a Minute and try to get off Prednisone entirely and see where my platelets land.

3. Say Hello to More Rituxin on the "if some is good, more must be better" theory and see what benefit is derived there.

4. Say "Combo" and try 3 then 2.

5. Say "Work Ethic" and stay on the same dose of Pred for the moment and dramatically increase the quality of my diet and exercise while seeing a Chinese doctor for accupuncture and herbs.

Any thoughts?

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Re: New to ITP, my story attached, have questions 10 years 1 month ago #20482

  • eklein
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Since you ask:
I don't think we've seen anyone here with minimal response to Rituxan who benefitted from more Rituxan - and I have never seen any research to support that either.

The prednisone dose you are on is probably doing little to nothing platelet-wise.

My vote would be to continue to taper the prednisone and continue to watch your counts. And it never hurts to eat healthier and exercise healthier!

Chinese herbs IMHO are quite a risky undertaking - they may not be what they say they are, and/or may not be pure, and/or may not be safe. I've never heard of harm from accupuncture though except possibly to the wallet.

Can you live your life pretty much as you need to at this point? If yes, why not keep the spleen a while longer?
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 1 month ago #20483

  • Sandi
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1. Viable option. Wouldn't be my choice, but could certinly be yours.
2. Another viable option, but I don't think you'd be happy with that.
3. Nix that. That theory goes against all that is known about Rituxan.
4. Involves #3 which I just nixed.
5. Viable option to buy time until you make a decision or perhaps see a spontaneous rise.

That's my 2 cents. There are other options as well.

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