I need info please

]My girl friend was send to the ER on On Dec 27 she had thrown up blood and felt vary weak. When we got to the ER they did a blood test and when it came back it showed she had a platelet level of 3. She was emited to the ICU (where she spent 4 nights) where she recived several transfusions. In the ICU the doctors were able to find out that she had H pylori which had caused small alsers in her stomach which had caused the bleeding. They also found out that she was vary anemic and had vary low iron levels. The doctors were able to boost her platelets up (one thing that helped was the IVIG) and stop the bleeding in her stomach. After a long 4 days we got out of the ICU and had to spend one more day on the normal floor. By the time we left her platlets were up to around 17. At this point she is on Prednisone we went to the doc on monday jan 5 and her numbers were holding at 18ish. On wednesday Jan 14 her platelets dropped to 7. At that point she had another IVIG which only boosted her levels for about 4 days. Seance then we have been to the doctor twice a week and the numbers have gone from 6 to 17 to 15. Her doctor has her on Promacta now for about 2 days. He is starting to talk about the splenectomy option because of the drastic changes in her levels. I dont think he is saying we are at that point yet but he dose think that is the way we are heading. I would love any info about what people think
Thank You

Welcome Marley,

Not many are online this time of day (2:00 am EST) so I will chime in.

First, you did not mention the term ITP. Is that what was diagnosed?

Second, Is the H. Pylori being treated? H. Pylori can cause ITP, and treating it can sometimes resolve the problem. Sandi (our moderator) posted an article on this just a couple of days ago:

www.ncbi.nlm.nih.gov/pubmed/25501820
Efficacy of Helicobacter pylori eradication for the 1st line treatment of immune thrombocytopenia patients with moderate thrombocytopenia.
pdsa.org/forum-sp-534/6-general-itp-discussion/16141-new-articles-posted-here-update-1-22-15.html?start=90#45914

This is a new study, and there has been a lot of skepticism about the role of H. Pylori, so you might want to print out the abstract of the article and ask the doctor to explain it to you.

Third, it is much too soon to be talking about splenectomy. You need to really educate yourself to be able to help your gf push back against pressure to have a splenectomy. Her spleen is an important (though not essential) organ, and removing it has both short-term and long term risks. Splenectomy is an old response to a problem while for many people ITP can be treated. And sometimes it can resolve on its own (spontaneous remission), especially early on. Some of the best hematologists NEVER resort to splenectomy.

Which reminds me, your gf should have the best hematologist available who is experienced with ITP. Let us know your location and someone here might be able to make a recommendation.

I am sure others will have more to say, so I will leave it at that for now. Off to sleep...

Hi Marley! What a scary story!

You need to give Promacta a chance. It can take a while to work, but when it does, it can be a great way to manage ITP. It should not be used to normalize counts though, the dose should be adjusted to keep counts around 50k.

As Rob said, it might be a good idea to see if treating H Pylori will help the counts. I wouldn't even think about splenectomy at this point. Many times, ITP can be a temporary thing. The changes in her counts are a normal ITP occurrence. IVIG is a very temporary treatment. It seems that the ulcer was the bigger problem here and once that is controlled, the bleeding should be also. Does she have any other symptoms?

A count of 15 and 17 are pretty much the same thing....not much difference. Platelet counts fluctuate constantly, so don't get too upset at a small drop down.

Oh my bad yes she has been diagnosed with ITP. The H Pylori has been treated and is completely out of her system. And as far as the splenectomy goes the Dr. wants us to have a surgeon lined up just incase she drops below 5 again. We are also pretty sure that she has had ITP for the last few years and we didn't find out till the H Pylori. I think my Dr. is worried because she has not responded to prednisone.

So I guess my question is when is it time to look at splenectomy?

Marley81 wrote: So I guess my question is when is it time to look at splenectomy?

Never! And I really mean that.

Marley,

Ann has a way of getting straight to the point without mincing words. I agree with her.

Splenectomy is not without surgical risk.
People without spleen are at greater risk for stroke.
Your spleen is an important part of your immune system. Loss of spleen requires regular vaccinations and still increased risk of infection remains.
Splenectomies don't always work. When they do work, the result is not always permanent.
There are many options to treat low platelets. If splenectomy doesn't work, other treatment options may be eliminated because of the added risk of infection.
Even with low platelets, fatal bleeding is rare.
There is a lot of research in progress which might bear fruit.
A splenectomy is irreversible.

There are positive arguments to be made for splenectomy for ITP, but in almost all cases, the risks outweigh the benefits, IMHO.

Marley:

Splenectomy is an old school treatment that isn't used much any more. The fact that she didn't respond to Prednisone and has low counts has nothing to do with whether or not a person 'needs' a splenectomy. In all honesty, some doctors are up to speed with ITP and some are not. Sometimes a second opinion is needed. A splenectomy is not a cure, although many doctors lead people to believe that it is.

Rob has given you some good points to consider, ITP has so many more treatment options now than it ever did. The best thing to do is read about all of the options and become familiar with them. There are many posts here that detail the experiences of others that can help.

It's only been a month since all of this started; ITP sometimes remits after a few months so it doesn't hurt to give it some time. If her ITP was due to H Pylori, it will take some time for counts to respond. There is no reason to rush into anything. It is not necessary to have normal counts. As long as there are no bleeding symptoms, most people do just fine with counts over 20k. Having counts lower than that does not mean that anything bad will happen, although treating at that point is a good idea for most.

I believe an informed decision is the best decision. Due diligence in research of itp, along with a cautious approach. But the bottom line its your body and your decision on the method of treatment. FYI this is coming from someone who has had a spleenectomy. So you may run the risk of being a second class member on this website but you have the final say. May GOD be with you.

The Hemotologist told me to get a surgeon lined up for a splenectomy before I left the hospital. I got cold feet and cancelled the surgery. Fortunately, the hemo who has my case at the local practice is cool with me being on Promacta for a while. She even referred me to another doctor at the same practice who is into Chinese and complimentary medicine. They have Reiki there and other classes available. If you live near Syracuse, NY, it's Hematology/Oncology Associates.

I believe that everyone here is very supportive of those who decide on the splenectomy. Once the decision is made, everyone cheers them on and wishes the best for them. I have never seen anything different than that and no one is treated badly due to any treatment decision.

To suggest a splenectomy after only a few weeks is pretty premature. It may or may not have it's place in the treatment line-up, but I don't think anyone would want to have one unnecessarily if ITP could possibly remit in a reasonable period of time.

Marley..... My story is very similar, just wanted to mention a few things, the first is I had the h pylori test and tested positive, had the treatment and counts stayed down, tested again for h pylori and still positive, second round of antibiotics, finally got rid of it. This happened very early on in my journey, still not sure if that helped with the outcome of being itp free for five years or it was a very long course of prednisone (12months). I have a friend that I met here and she had her spleen removed after about 2months with itp, she also is still itp free, she has better numbers now then I do but we are both doing well.
It is scarey when bleeding is involved.... I understand that side of it, I had blood transfusion, platelets, iron... You name a blood product and I have had it... I do think all treatments take time but I don't think anyone is treated badly on this board because of their treatment choice, there are just lots of people here with years of experience with this and they have helped me so much. Good luck with whatever you decide to do.

I dont feel that our doctor is old school or not up to speed on ITP he is actually one of the tope 15 Hemotologist in the Bay Area so I dont feel that he isn't aware of other treatments. I do think he is vary concerned because when we brought her into the ER she had lost over 2/3rds of her blood due to a mix of the ITP,H Pylori, and her Anemia. I think that he is afraid that she will drop back below 10 again and start bleeding again. I guess I would like to know how normal it is for a person with ITP to be dealing with levels below 10.

Kelly if you dont mind me asking what it is like living with out your spleen because so far every thing I have heard seams like it is from people who have chose not to go that rout and it would be vary helpful to her the counter side. Sorry if that is to personal to ask.

I guess I would like to know how normal it is for a person with ITP to be dealing with levels below 10.

It can be 'normal' and safe. It all varies with the individual.
Several of us on this forum live comfortably with 'low' counts. Mine run 9k-15k usually with treatment...but I dip below 5k as well. Last week I hit a 2-year record of 21k.
The key is knowing what your symptoms do when counts get lower, when to freak out and when not to freak out. In other words, learning what is safe for you. That takes some time and patience..for everyone involved (including the hematologist).

You mentioned a splenectomy because of no response to prednisone after only a month. Those two treatments are probably the oldest of those available; Splenectomy is 100 years old, Prednisone is around 60 years old. Consider that Penicillin wasn't even discovered back when a splenectomy was thought to be the state-of-the-art treatment for ITP.
There are many newer treatments available for ITP which might be tried before cutting out a body part.


.

I had my splenectomy in 2006 and haven't become a second class member!

Cindy - def 1st class all the way!

Marley, you asked Kelly what it is like to live without a spleen. Just remember that the answer is different for different people. Some have success wrt platelet count, some have initial success but relapse later, some have no success, and some small number don't make it through surgery. Out of each group (except the last), some lead perfectly normal lives while only taking a few added precautions, some have increased infections, some have stroke, and some of these infections and strokes can be fatal.

I could make a similar list for any of the treatments available for ITP. So there is not just one experience of what it is like to live without a spleen. Anecdotes don't work unless you put a lot of them together! Your girlfriend needs to be familiar not only with the possible negatives of any treatment, but also the likelihood (probability) of those adverse events happening.

ITP is most often something someone learns to live with, with various levels of treatment and various levels of success. It is rare to die of a bleeding episode.

Another matter - one thing I think hasn't been mentioned here: The old normal platelet count has been changed from 150 to 100k but much lower levels are safe. With Promacta, 50k is the target level, as higher counts increase risk of stroke. So on Promacta, 50 is the new 150!

Marley:

I understand the fear of another bleeding episode, but if the ulcer has been cleared up, that risk is decreased. It is rare to have significant bleeding with ITP.

A splenectomy is not a guarantee that counts will stay up. There are treatments such as N-Plate or Promacta that have a better success rate, can cause remission and are not as invasive and permanent as the surgery. I think the main thing is that if the splenectomy does not work, any treatments used after that can increase risks such as infection and clots.

If you decide on the splenectomy option, just be as informed about it as you can.

Here is a video you can watch, which is given by one of the top ITP Specialists in the world. It's a start.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Went to the Doc yesterday She is was at 10. This sucks right back to where we were a month ago

I know it's frustrating and quite common. I didn't get above 10 the first month either....my doctor kept using Win-Rho which didn't raise my count at all. I had five weekly treatments that didn't do a thing. Knowing what I know now, that was just a waste of time.

Here is a similar thread with some similar stories. It might help to read them.

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/28516-newly-diagnosed-and-counts-are-uncontrollable.html

First let me stress I am not pro spleenectomy. There were very few alt treatments when I was first treated. I just feel much like when my father was diagnosed with cancer,the doctor stated it is really all your decision and no one elses. I have been fortunate with few negative health issues from the spleenectomy. It is my understanding the younger you are the higher the risk but also the greater chance of improved plt count. I am not going to second guess my decision it serves no purpose. I was told a high fever warranted quick access to a hospital/avoid rock climbing or other high risk endevours. other than that I lead a normal life. Im sure this hasnt helped much but its the most Ive typed since highschool. May God be with you!

thank you for sharing

One thing I have really tried to do is prevent someone from ever second guessing their splenectomy decision once it has been made. Of course patients need to make an informed decision prior to that final decision, but once it's announced, no one has ever tried to talk anyone out of it.

We've had people come here years after a splenectomy and say they regretted it, but that was because of something that happened to them personally. They were led to believe it was a cure and counts dropped again, or they became septic or had a stroke, something.....but as far as I know, no one has ever said, "You shouldn't have done that".

We have also had people here who have had no problems at all (so far) due to having the surgery.

With all of the treatment options available today and the research that keeps coming out about splenectomies, it is a good idea for patients to be aware of all options. If someone comes to this Forum, I believe they are coming here to ask questions and get suggestions. If they didn't want that, there would be no reason to post here.

A doctor should present all options and discuss them with the patient. If he isn't doing that, something is lacking in his care.

ITP Guidelines:

Depending on the clinical setting, splenectomy is deferred in most patients for at least 6 months. This may be due to patient preference or other active comorbidities and to the understanding that spontaneous improvement or late remission may occur 6 to 12 months after diagnosis; indeed, some patients may spontaneously remit even years after diagnosis.

www.bloodjournal.org/content/115/2/168.full?sso-checked=true