New to ITP, my story attached, have questions

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...

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!

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.

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.

Hey KO - how did it go?

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

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?

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?

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

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

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

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.

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.

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

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.

Ann wrote: Maybe this one.. www.haematologica.org/content/92/12/1695.full
l

Yes, Ann, that's the one!

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.

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?

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

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.

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.

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.

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.

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..

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.
• 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

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.

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.

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

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

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.

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