Doc says I have a chance

of making it to the end of my steroid taper without tanking, but he was cautious about saying that since I dropped from 407,000 to 330,000 last week once I got on alternating 5 and 10 mg. I am nervous about it tanking and having to get back on higher levels of steroids. He says if this does not work, I should go for a splenectomy, which I am leery of and told him so. In that case, he advises promacta which I guess you have to stay on for the rest of your life. Not appealing since there is such a short history of it that who knows long term side effects.

I am very glad I did not get this til I was 66. I feel bad for those who have to deal with it for decades. I probably don't have decades more to go.

Those of you who have taken promacta, what is your experience with it?

What have you tried besides prednisone?

In 1990 the head of hematology at the medical center/teaching hospital here told me I'd have my spleen removed - well 23 years later that thing is still where God put it, in me.

You are worried about tanking and going back on high doses of prednisone? When I tanked after a tetanus booster I told my hematologist I refuse to take prednisone - and I didn't. Figured it's my body so I'm not taking it! Had WinRho instead and have had decent counts since - not counts you want, in the normal range, but good decent counts.

Read up on all that is available to you and remember, it's your body.

I had six ivigs which did nothing and 2 large dose winrhos which did nothing. My doctor says generally the people who respond to ivigs respond to winrhos. He says he thinks my body made no platelets at all for two weeks and that is why the ivigs and winrhos did not work. And once my body realized it needed to make the platelets, it churned them out over 1,000 an hour so that I went from 25,000 to 90,000 in two days. Then a few days later to 240,000, then a view days later something like 340,000. So all that I have really had so far is prednisone. He says he used to use rituxin more but that it at best generally only gives a few years remission. I think it is in his head to get to a place where you don't have to have anything and that is why he goes for splenectomies. And if I were sure it would work, I might go for it. But at my age, there is only something like a 40% chance of it working permanently.

Obviously, I am hoping to maintain normal counts, but I have no idea if I can. He said most people go down a great deal at 10mg. I survived that. I was on 10mg for four weeks and my platelets increased each week. But if I can survive 5, I don't know. Guess we'll find out.

I have read everything I can find in ITP and watched the videos, etc. But I can't predict what will happen.

Your doctor is saying things that don't make sense. Why would he give winrho which gives usually a few months remission at most and not rituxan which gives a few years? How many years remission does he think you get if you lose your spleen? IVIG gives a few weeks at most usually. Why did he give you six if each one did nothing?

Have you considered a second opinion?
Erica

I was thinking the same thing, the doctor has said some things that don't make sense.

I have a friend who has an 8+ year remission after Rituxan.

I will be 4 years in remission this Sept/Oct after Rituxan. My splenectomy didn't last longer than a month; IVIG worked as long as I got it every week, which I did the first year I was diagnosed and WinRho did nothing.

It was another doctor who gave me the IVigs and Winrho, not this guy. This guy says his thinking about this has evolved over the years. He thinks, I believe, that it is better for a person to remove their spleen and make them a non-ITP patient than keep them on drugs which have toxic side effects forever. And I would agree if I were certain the splenectomy would have the desire results. I just don't think I want to go into advanced old age without a spleen if there if there is any other way to remain ok.

It is this guy's belief that the ivigs and the winrho did nothing because my body was not ready to use them. He thinks my platelets dropped to 10,000 within hours rather than days and that I was not producing any platelets at all for a couple weeks and so those drugs did nothing.

I just came out of Rituximab remission of over 6 years. I'd do Rituxan again if I could even if the remission time was cut in half!

RHofm50129 wrote: It was another doctor who gave me the IVigs and Winrho, not this guy. This guy says his thinking about this has evolved over the years. He thinks, I believe, that it is better for a person to remove their spleen and make them a non-ITP patient than keep them on drugs which have toxic side effects forever. And I would agree if I were certain the splenectomy would have the desire results. I just don't think I want to go into advanced old age without a spleen if there if there is any other way to remain ok.

I think he would have been right with the thinking of a few years ago. But now we know that the spleen does far more than they ever thought, I think he's wrong. But that's the conclusion I've personally come to. As long as the doctor tells the patient the full pros and cons of the procedure and its results then it's fine. And then it's for the informed patient to decide.

What's more the new drugs don't appear to have toxic side effects and still need not be needed for ever. Remissions are common, both drug induced and spontaneous.

I tend to worry about being spleenless and then having to use immunosuppressants (Prednisone, Rituxan) if the splenectomy doesn't work. It leaves a person too open to contracting a serious illness from a bacteria. There was just an article published that stated that immunizations don't work as well after Rituxan.

I tend to also worry about being spleenless and then having to use Promacta or N-Plate. That leaves a person at risk for blood clots. I'd rather try those first than put myself at risk for other problems.

I agree 100%. I don't intend to lose my spleen unless there is nothing else to try. I Hope I don't get to that point.

RHofm50129 wrote: This guy says his thinking about this has evolved over the years. He thinks, I believe, that it is better for a person to remove their spleen and make them a non-ITP patient

I was diagnosed in 1989 and that was the thinking then so I don't know if his thinking has evolved - back in 1989 it was remove the spleen and get rid of ITP. Removing the spleen doesn't make one a "non-ITP patient".

With the advancements in treatments the past few years, I'd think very few people ever need to get to that point any more. Promacta and N-Plate are working for asplenic people who could never get counts out of single digits.

If the spleen thing worked 100% of the time, I think it might be of value to people. Taking a drug for decades always has some sort of negative impact. And when you are dealing with "new" drugs like promacta and n-plate, you are really a guinea pig. They don't know much about long term consequences of even drugs that have been used for decades. Look at the hormone replacement thing. They pushed that and pushed that, then actually did a study that showed such a strong connection with breast cancer that they stopped the study. Why that study was not done before thousands of women used those hormones, I don't know.

back in 1989 it was remove the spleen and get rid of ITP.

Set the TARDIS for the year 1916 and the destination Earth/Poland. There a young student Paul Kaznelson first recorded his ITP patient's response to a splenectomy. Splenectomy remained the prime treatment until the steroids came in the 1950s.

But wait....THIS IS THE YEAR 2013 !!!

Now, where did I leave my bottle of leeches?
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Yes, people using new drugs are guinea pigs in a way. But research is still discovering new problems that living without a spleen can cause.

I think I'd worry more about long-term side effects of TPO's for a child or young adult. Tough choices for sure.

Better look for that bottle. The ancient physician's art of using leeches has made a modern medical comeback: the worms help doctors do everything from reattach severed fingers to treat potentially fatal circulation disorders.

I agree Sandi. I am very happy I did not get this disease til I was 66. To cope with it from your youth all through your life and to take these drugs for many decades would be far worse.

It's such a gamble. I have really thought about being on TPO's and possible risks. For me personally, I would rather take the risks of the TPO than be at a platelet count of two ( which happens to me when not treated) and suffer a cerebral hemorrhage or another intensive bleed. ( I met a few people who had this happen to them...very scary). However, if I was someone whose counts ran in the 20's or 30's, I would really weigh the risks of treatments.

And TPO's can also cause strokes if risk factors are present. It's happened to a few young people here. There are no magic answers, you just have to do what you feel is best. Being informed and having a thorough doctor can make the choices a bit easier.

Just came from my Doc who insists that I get a splenectomy SOON as my counts are down to 13K despite having Rituxan treatments 11 weeks ago. He strongly advises against meds at this stage (I've already failed Prednisone, with counts dropping back to the teens), and he feels that IVIG, WinRho and Dex are temporary treatments only. He also doesn't like the TPO's due to evidence of bone marrow fibrosis, so his only solution is to take the spleen out. Aargh! Is he right that IVIG, WinRho and Dex only work temporarily?? Has anyone had serous problems with Promacta or NPlate??? Is splenectomy really my only choice??

At the conference they talked about immunosuppressants. They said some hematologists are terrified of them. However, one doctor said Immuran is safe enough for pregnant woman, so you can research Immuran, cyclosporine and cellcept possibly to ask your doctor about. I was on cyclosporine, which didn't help me, but it could work for you or one of the other ones. I am on Nplate without any problems but do not have bone marrow fibrosis.

>>>"so his only solution is to take the spleen out."

While it may be "HIS ONLY SOLUTION", that does not have to be YOUR ONLY SOLUTION.
It is second opinion time.
This is the year 2013. It is not 1916, when splenectomy was the hot new (and only) ITP treatment.
There are many other options available these days.
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Was it Dr. Lieberman who liked Imuran? He was talking it up when I attended a few years ago, for those who succeeded with Rituxan but were unable to take Rituxan again due to reactions.
Erica

Thanks to all for your comments. Weird Jack, to answer your questions, I'm 62 and have had platelet counts averaging 20-25K for about two years, but now I have dropped to 13-15K. My only symptom is easy bruising (that's the Purpura in the term, I finally learned!!), and since I'm pretty active--I used to do Habitat houses but that's on hold for obvious reasons), it's hard to avoid so many of my prior activities. I think my Doc feels that the drop in numbers is going to be a trend, and it is just a matter of time before I'll be forced into surgery, but as you say, he doesn't seem to consider drugs as a viable option. I'm now on pulse Dex as my son is getting married next weekend in Columbus, and I noticed from an earlier post that you liked Dr. Cataland (but I can't get through their voice mail/answering system?!), so I might see if I can set up a second opinion with him ASAP. As for the Imuran, the warning about associated Malignancies is pretty scarey!!

I just turned 60, so I'm not far behind you.
My counts run in the 10k-20k range using Cellcept (immune-suppressant) at the moment (what can I say, it's cheap). I was at 19k on the last check, then had oral surgery the next day. No worries. After a decade, one does get somewhat accustomed to all of this. The more you learn about the disorder and your own version of it, the less scary it becomes.

Everyone is different and everyone has different 'safe levels'. Treating ITP is often like trying to herd cats. So the trick is to find a hematologist who knows his stuff and will work with you, find what treatment works for you and what you tolerate the best....then get on with life. True, I no longer skydive and I only own two chainsaws now, but not because of ITP. Life continues.
I have nothing but wonderful things to say about Dr. Cataland and 'The James'. I would have gone postal years ago if I'd have had to deal with some of the doctors I read about here. I am not a very patient patient. Since most of this ITP treatment stuff is 'trial and error', so it is wonderful to have someone willing to 'try' rather than 'command'.

Sorry you have to do Dex at your son's wedding.
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Luca,

I live in Ohio but could not get in with Cataland for 4 months and was in the same boat where I was being forced into surgery. Cleveland clinic was able to get me in within 2 weeks. I go to Dr. mccrae there and it's a four hour drive for me, but he is an expert and its been worth it. There is another itp specialist there who was recommended at conference as well, I think dr. Lickter or something like that.

Erica,

He was there, but I think it was another doctor that gave that part of the lecture this time.

An update: I survived (and enjoyed!!) my son's wedding with a Dex pulse, and returned home to find my count down to 16K. My Hemo again feels splenectomy is the way to go, but I talked him into a trial of Promacta if I could get it. Unfortunately, my Anthem insurance plan only gives me generic drugs, and I learned today the cost of 30 pills would be $5,120!!!(So much for big pharmacy "buying power!") My hemo insists that I treat at 16K, even though I have no symptoms. He says that I can't do Dex for 30 days from the last treatment, so I'm looking at IVIG or??? Anyone have any suggestions??

Luca:

Let me ask you this. What treatment would you try if you'd already had a splenectomy and it didn't work?

Problem with splenectomies. They leave a person immunosuppressed. If it doesn't work and you end up having to use CellCept, Imuran, Decadron, etc., that will cause even more immunosuppression. Your doc is afraid of them now?

Another problem. Splenectomies raise the risk of blood clots. If it doesn't work and you end up having to use Promacta or N-Plate, that risk goes up.

There are no easy answers to this. There is no such thing as being 'forced into surgery'. There also isn't much difference between 20k and 16k, although I know that most use a certain count as a treatment threshold. If you believe that splenectomy is the way to go, it is an option. Just do your research and make an informed decision.