Severe ITP

Hello,
I was diagnosed with ITP a little over a month ago, my platelets dropped to 4,000 ... i was hospitalized for two weeks and the only medication that made my platelets rise was Gamma Gobulin (spell check) ... i have meeting with my hematologist weekly and my count has dropped, he wants to remove my spleen. Anywho , two days ago i noticed this very paimful,grap sized lump under my armpit, does that have any relation to ITP? and if its just a cyst, will it be safe for me to get it cut open and removed seeing as i have no blood to spare ?

Hi April! What other treatments have you tried? It's far to soon to consider splenectomy...you were just diagnosed!

As for the cyst, you'd have to check with the doctor who will be removing it. You have plenty of blood, you're just short on clotting abilities.

Hey Sandi,
I've actually tried a lot of things , half of th medication I had allergic reaction to including the fans globulin , my hematologist wants to do surgery immediately , my platelet count was at 392,000 and drop to 88,000 in just one week. We've tried everything .

I'm not certain if it's a cyst , I'm going to the hospital later this evening to figure out exactly what it is . And yes I'm aware I have blood but my doctor told me from the slightest cut i could bleed to death because my non clotting abilities .

April - it doesn't sound like your doctor is too familiar with ITP. Most people will not bleed to death from a small cut. That's an odd thing to tell you.

You said you've tried everything - what did you try and what is fans globulin? If you used IVIG, counts can drop from the 300's to below 100 in a week. That's pretty typical for ITP.

He's actually a hematologist , at the point where my count was at 4,000 and I was going through my menstrual cycle I was losing a huge amount of blood as he made the comment about the cut.

I'm actually on an iPhone and it has auto corrects, I meant gama gobulin( ivig) I also took prednisone , promacta , got an injection that started with an R .

Anywho I went to the doc and it turned out to be an abscess, which had to be cut open and drained ( verry painful ) .

This Friday my hematologist and I are going to sit down and discuss the surgery date and details . I'm pretty nervous because I heard taking out the spleen makes you prone to having severe infections etc

Agree with Sandi!!! Far to early to be considering a Splenectomy!!! Splenectomy is "old school" and once it is done there is no replacing your Spleen!! You already know the increased risk of getting a serious or life threatning illness with a Splenectomy, so why make that decession so soon? By no means do I want to make this harder for you, but I am sure most of us will agree it is to soon for a Splenectomy. You say an injection, are you meaning Rituxan? You are not going to bleed to death from a "small" cut!!

April- I agree with Sandi and Dean, You have ITP since only a month, its too soon to decide on Splenectomy. My ITP was diagnosed in April 2012 with count of 2k. Since than my doc has tried out many treatment (steroids, Cellcept, Cyclospotrine, IVIG,) but my count never bettered 6k . Now I will be going for Rituxan. So talk with your doc about other treatments. Go through PDSA site for more info.

One month and they want to yank your spleen? Some ITP treatments don't even begin to work in that short of a time period.
You may want to consider getting a second opinion...as it is far too early in your ITP journey to be considering a splenectomy.
Sure, it was the hot-new treatment for ITP 98 years ago....back when they still used leeches.
There are a lot of ITP treatments to try before getting a irreplaceable organ removed.

Ok,If I thought I was stressing out about this before, i definitely am now . A few of the medications I have takin I either had a bad allergic reaction to it or terrible, unbearable side affects. The only thing that brought my platelets up was the ivig , but it dropped my heart rate. I had tightness in the chest, muscle spazms and really bad itching. The hematologist said that this is such a un predictable disease so thats why he suggested removing my spleen.'my count drops every week . I Dnt knw whtv to do

April,
The reason why so many of us are cautioning you about getting the spleen out is that it is only around 60% effective and you never know how long it will keep your platelets up. In some people, the liver takes over the job of killing the platelets (that the spleen did) pretty quickly, in which you end up with low platelets and no spleen. Recent research says that not having a spleen increases the risk of blood clots.

What you should do is get a second opinion. You can ask your Dr for a second opinion referral. A Dr. should be willing to do that. Or just get into the phone book and look for other hematologists. When you call, ask if the Dr has many ITP patients. ITP is becoming more common, so there should be someone in your area with more experience.

When you go to your second opinion appointment, you will need to take your medical records with you so that the Dr can see what treatments you have had. You should also educate yourself on what you have had.

Then, if you can list what you have taken, your second opinion Dr can give you other options. The members here can also tell you about other options and tell you about our experiences with different things.

You should also educate yourself on ITP. This website is a good place to start. At the top of the page there is a section called treatments, read it get familiar with the options. The more you understand, the more you will feel comfortable with the decisions YOU and YOUR Doctor (should) make together about treatment. Most people feel more comfortable when they feel like they have a partnership with their Dr. That together the Dr. and patient work toward finding the best solution. It is your body, and your life.
OK I'll get off my soap box now.

I will definitely ask my hematologist about ratuxin (spell check ) he jus informed me that disease is so un predictable , so after the promacta and prednisone didn't do anything he said he wanted to do surgery immediately . But after hearing all these comments about it being too soon I'm definitley going to check into some more resources .

But you've just said elsewhere that you haven't taken the Promacta yet. This is confusing.

Sorry for the confusion. I was prescribed promacta , but have not yet taken it . I am a little worried about the side effects as I have bad side effects from the other medications I have taken .

You will get bad side effects from the steroids.. everyone does but Promacta is completely different. I've used Nplate which works in a sort of similar way and have had no side effects at all.

April:

I just typed a very long response and all of it got lost. The site logged me out. I'll try to remember what I said.

We are not trying to confuse you, just help you to realize that you have options. A splenectomy is not a cure. It may or may not work. It could seem to work at first, then fail days, weeks, months or years later. Most people realize that they are at risk for infections after a splenectomy, but they don't realize that if the ITP returns or they are diagnosed with another autoimmune disorder, they may end up on immune-suppressants which would make a person even more immuno-suppressed.

I was diagnosed with ITP in 1998. Treated off and on for 6 years trying Prednisone, Win-Rho, Danazol, Dapsone and Rituxan. Prednisone and Rituxan worked for me, the others did not. Splenectomy was mentioned a few times; I said no. In 1996, I was diagnosed with Lupus. I have been on Prednisone non-stop for the past 7 years, and also use Methotrexate injections to treat it. Methotrexate is a type of chemo, so I consider myself pretty immunosuppressed. You don't know how glad I am that I kept my spleen. I'm sure it's pretty helpful now.

It was also discovered that I have APS antibodies. APS is a disorder that can cause blood clots and can also go along with ITP. Being asplenic can place a person at risk for blood clots, so having APS and being spleenless can be double trouble. Again, glad I kept my spleen. I could not have foreseen any of these things, but am glad of the decision that I made. No one knows what the future holds.

A splenectomy is not an emergency for ITP. There is always time to think about it, research it and make an informed decision. You can always do it later. Most people have side effects with the treatments, some more than others, but none of this is easy for anyone. There is no quick fix. Take your time to research and learn.

I will speak to my doc tomorrow about the medication you mentioned . I have been trying to educate myself as much as possible And plan on continuing to do so . When I was hospitalized for two weeks they mentione removing my spleen a few times but were trying different medication first . When my doc mentioned it at my last week visit he said that if the promacta didn't show any results he wanted to do surgery immediately . My last menstrual cycle I lost a huge amount of blood . My cycle is coming back aroun in a couple of days so I assumed that's y he was so persistent to remove the spleen before my menstrual came . I bled for two weeks last time and it a was a large amount of blood . I Dnt knw . I'm no doctor . And I'm definitely new to all this so I take your advice and everyone else's very seriously . I really just want to get back to my life . I have a one year old daughter and I'm a single mother . I'm afraid to look for a job at this point because of this disease I Dnt knw what's gonna happened next with my platelet count . I feel so tired and weak . I was actually interested to knw if I could get some sort of disabilty benefits for the time being . This was so unexpected and it's very stressful and unpredictable

April:

Many women have heavy periods when counts are low. When it happened to me, my hemo prescribed Provera which stopped the periods until the counts went up. That is an option for you....many women have done that. Talk to your doctor. There are ways to manage all of this.

I was once where you are. Newly diagnosed, low counts, in the middle of finding what works. AT the time, I was working a full time job and had three young kids. My husband travels and was always gone during the week. I had a doctor who stayed calm and as a result, I tried to stay calm. I worked with counts of 3 and I worked during the treatments. It can be done. I won't say that it was easy; yes, I was a basket case, especially when I was on high dose Prednisone. The side effects were horrible and I felt like I was going to snap. I would go into the bathroom at work during the day and just sit there and either cry or take deep breaths. The job was stressful and I shook constantly. I couldn't speak a coherent sentence. My kids were in various activities so after work, we'd pile in the car and run around. We'd get home around 9 and then I'd make dinner and help with homework. I got to bed around midnight, exhausted. I remember thinking it was an effort to lay down. I told myself every single night that I could NOT do another day. But I did. I got through it. I couldn't get rid of the job or the kids, so there wasn't a choice.

The only way to get short-term disability is if you have it through your job. Government disability is very hard to get. There are criteria to meet with ITP and it can take between 5 months to a few years to get approved. The criteria have been posted here before, if you want, I'll see if I can find it. Once you get approved, it takes two years to be eligible for Medicare.

Thanks for your advice . Everyone is different , everyone has different reaction is different . True we both share the fact that we have ITP ... But some cases are different than others . I'm glad i got the opportunity to hear different stories and experience others had with it , however I just have to trust in God and my doctors and have faith that will do what's best for me. As i said I will
Continue to do my research and go
From there .

April, i had ITP in 1999, and splenectomy was almost forced - luckily i had a remission. 13 years later, ITP has come back with a vengeance!! Count was at 6, then IVIG for 2 days, count up to 200's, then 2 weeks later down to 4, then repeat. I was getting IVIG every 2 weeks. lowest count was 1. Tried danazol, dexamethasone, papaya leaf extract, all unsuccessful, splenectomy recommended the whole time. Finally tried 50 mg Revolade (also known as eltrombopag, promacta)6 weeks of 50mg and my count went to 1. upped the dose to 75mg (the max) and i have had decent counts now (last tuesday was 200) since the middle of may.
What i am basically trying to say is hold out on the spleen. I still have mine and will keep it forever. removing the spleen is an attempt to fix the symptom, not the problem. your spleen is actually doing exactly what it is supposed to be doing, your immune system is just a confused. Why would you remove a perfectly good organ, that is doing what its supposed to do? Ask your hema. what he would tell his/her OWN child to do!
Most of the stuff they give you to try has horrible side effects. dexamethasone was the worst for me - i almost got up and punched a guy for looking at me - and that is not me AT ALL!!
1 month is waaaayyy too soon to do something so drastic. Please, listen to those who have had this for years, its not that bad, and in most cases, with time and trial, a lot of people find something that will work, just look thru the posts, at all the people who have commented, and disappeared, im willing to bet they are gone because their itp is also gone.
There is a wealth of information here, and if the ivig works for you, you have a way to temporarily maintain a "safe" count, i went from december 2011 to may 2012 every 2 weeks for ivig, and may have to again, but at least i know how to get them up, and if it is doing the same for you, research research research.

Getting my spleen remove next week . My hematologist which is also an oncologist said that is my best bet at this point . I've done my research and I found everything I could for the time being . I read stories of people who have had their spleen removed and they are doing just fine . I believe everyone and every case is different . Thank for ur input .

Every medication is given to stabilize there is no cure .

april86 wrote: Every medication is given to stabilize there is no cure .

Some are given to push into a remission. Others are given to stabilise at a safe count. That is the difference that people mean.

Good luck with your surgery.

Hey April, I have been watching your story, just wanted to say good luck for your surgery. I have two friends that I met on here that have had their spleen removed one it worked for the other didn't.

Please let us know how you go and again good luck

Somehow, I missed this thread until now, so sorry to jump in late. I do hope you got a second hematologist's opinion on the spleen. (All hematologists I ever met were also oncologists. That's the usual combo. Like ob and gyn usuallubgontogether.)You're newly diagnosed, and if this goes away on its own, you will want your spleen later in life. I'm pretty sure splenectomy limits some of your other treatment options if it doesn't work. My daughter had spontaneous resolution of her ITP, with safer counts after about fifteen months and normal counts after about two years. She still gets a count every six months. She is glad she kept her spleen. I haven't seen many permanent splenectomy successes on here, but maybe those folks don't post once they're cleared of ITP. If this works, please return here from time to time to support the newly diagnosed scared ones. Good luck.
Norma

Good luck, April. I hope it works for you. Keep us posted.

I spoke to another hematologist yesterday and before I even asked , he suggested that I got my spleen removed . Someone also on this site mentioned that a lump I had under my arm had nothing to do with ITP .., but after ultra sounds and speaking with my doctor he said this was caused by the ITP. Although reading others stories are influential I can't take heed to everyone's opinion
And experiences because something work for others that don't work for te next person . In example someone I met here said prednisone did the trick . Prednisone did nothing for me . Thanks for your well wishes .

Thank you

Hi all,

This is my first quote on this site even though I've had ITP since I was 13 (now 33). A bit of background about my situation and discoveries. I have always played high level soccer and used to get bruises all over but always attributed it to soccer as did my parents. One day during a game another player rolled over and his knee went hard into my stomach. As the day wore on the pain got worse until my mom took me to the hospital. I had ruptured my spleen and my platelet count was 7. They took out my spleen, diagnosed me with ITP and I went on my not so merry way. I continued to play soccer with counts randing between 12 - 50 against certains doctors advice. I finished playing competitively at the age of 27 after earning a scholarship to University and completing my degree. I have tried many remedies including pred and dex. My platelets were 'stable' at counts of 15 but at my latest test they went to 5. Doc put me on dex 40mg for 4 cycles (every other week). My platelets went from 5 to 110 to 6 and I'm now finished the 2nd cycle of dex. Hemo said that after 4 cycles it may push my platelet count up for a year, may not also. The thing with this nuisance that is ITP is that we neither here nor there, we don't know what causes it therefore don't know what can cure it. It's all trial and error, therefore, try whatever is safe. Maybe not having a spleen will negatively affect me later in life, maybe it won't but again I'll face it head on just like we all do. ITP has not detered my quality of life besides the fact that I don't drink near as much as I used to and boy do I miss a few pints on a Friday evening! But hey ho, that's life. If anyone has any questions please let me know and all the best to you all, beautiful people!

Hi April ime 47 and have had itp for 35 years i had a splenectomy at 19 successful for about 12 years, then diagnosed with common variable immunodeficiency wich they use gamma globulin(ivig) for it doesnt help, had a second splenectomy bout 10 years ago this time it didnt work, copious amounts of prednisolone (steroid) 4 years worth of rituximab (rituxan) but i only get about a year of better counts and am now considering NPLATE my levels are usually in thier teens and now i just seem to live with the bruising etc . Diane