vertical learning curve

I was diagnosed with ITP a week ago today. I had typical symptoms but had no idea what was going on. A blood draw showed my count to be zero (or less than 1000/150,000). A second draw a few hours later showed a count of 2. I received two IVs of prednisone, then an IGIV and then a third of prednisone in three days. My count went from 0 to 2 to 37 after the IGIV. I was switched to 80mg of oral prednisone and my count when leaving the hospital after a 5 day stay was 53. Apparently I was the talk of the lab as no one had ever seen a zero before - not how I wanted my 15 min of fame!

I have been home for two days. This morning I had a draw and labs and my count has sunk to 11. I did what I thought was a good amount of research while in the hospital and the upward trend count was encouraging. Now that I am at a dangerous level of 11 and 80mg of prednisone is not making much difference I find myself on another vertical learning curve. My hematologist said that he wants to do a round of Rituxan as soon as tomorrow but is also talking surgery already. From what I am reading, this isn't' exactly radical but it is all happening so fast that I am hesitant to make serious decisions. Friends are urging me to get a second opinion. So, while I understand this is not a clinic, I'm turning to the experienced to learn what I can before the internet scares me off.

Hi Larry,

Welcome, you have come to the right place. I'm very new to this board being that I was diagnosed just this past February. I myself got a second opinion when the first hematologist scared the hell out of me. It was as different as night and day between the two doctors. It's so important to find a doctor you can trust. My doctor did mention spleenectomy once and I told him to not even go there. I had no intention of losing my spleen. I can only speak for myself but I'm keeping mine. From all that I have read on this board there are all types of treatments. In my case I started off with Prednisone. The steriods did not work so the next form of treatment was the Rituxin. I tolerated the treatment well with no side effects and since my treatment this past April my platelets are normal. Actually each visit the platelets continue to get higher. This is the place to ask questions. There's a great bunch of people here.

hi larry welcome i 2 am new here ITP only a month the PDSA family have been informative encouraging and scary at times but i urge u 2 read alot of topics and wait at least 6 months b4 a spleen removal to c if other treatments work sometimes it takes weeks. i 2 have been under 10 since being diagnosed just finished a week of IVIG which has me up to 105 .thank GOD it feels good although its temporarily after a month in the danger zone i will take it. go 4 labs friday will let u know how it goes pray n 4 high platelets for us all. again take advantage of the group knowledge is power!! ur dr. does make a difference dont settle second opinion is always good ..good luck

Hi Larry, glad you found us. It's important to know that symptoms are sometimes more significant than the actual count. How were your symptoms? If they were minimal, I don't think I'd go rushing into anything drastic too quickly.

Rituxan wouldn't be a bad next step. It's a little quick but there isn't any order set in stone, and you did already try two of the first line treatments without much success. Rituxan can take weeks to work though (4 to 12 weeks after the first infusion), so you can't expect an improvement for a while.

Splenectomy has become quite controversial these days and is becoming a treatment of the past. It is not a cure and although doctors quote success rates of 60%, the percentages fall over time. A splenectomy can be successful initially, but counts can fall again in weeks, months or years. Doctors also often tell patients that they are a good candidate for this reason or that reason, but there is no way to predict who will respond.

This is a good video to watch from one of the top ITP specialists in the world:

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

Hi Sandi - Thank you for the reply and voice of calm reason! In hind-sight, some of my symptoms had been surfacing for a while - shortness of breath when going up stairs, dizziness, etc but the significant physical signs were literally over night and a bit shocking. I went to bed on a Saturday and woke up with what appeared to be blood blisters, about 6 of them the diameter of a pencil eraser, inside my mouth on my cheeks and one on my tongue. That was a Sunday. Monday the petequia showed up on my feet and legs. I had gone into work that morning for a meeting and by 8:00 a.m. there was a small bruise on my forehead for no apparent reason and petequia showing up on my face. That is when I knew this was not, "just a virus that had to be waited out."

This message board has been a wonderful resource and I have only been exploring it for less than 24 hours. The idea of getting a second opinion is a reoccurring one. I'm not dissatisfied with my hematologist and while in the hospital I had a team of three. Everything he has taught me (emphasis, taught) about this disease is the same as what is posted online and being discussed on this discussion board. He has personally followed up with me at home and his last words to me yesterday were, "We need to fix this." I actually feel really comfortable with him and I feel like he cares. The posts on here kind of reinforce that I might not need a second opinion - unless the scalpel comes out - but it also reinforces that he is being honest and up front with me about diagnosis and prognosis. I do feel confident that if I were to tell my hematologist that a splenectomy is out of the question he would respect that unless it was truly a life threatening issue.

One of my friends has a friend who is a retired doctor. Her advice to me was that if they want to take my spleen it must be for a reason - let them! So much for THAT second opinion. The general consensus that I am getting from the experts living with ITP on here is to say, "Hands off my spleen!" To be honest, I had to do a little research to learn just what the role of the spleen has in all of this.

I do not have the appt for the Rituxan scheduled yet but am still hoping to get that in this week. My plan of action today is to learn more about ITP on here and investigate other resources in my area - I live about 20 min from Minneapolis/St. Paul, MN and about 90 min from the Mayo Clinic so I should have access to quite a bit of info. Thank you again for your help!

It does sound like you have a caring doctor, but the words "fix this" seem strange for ITP. It's not a broken leg - you can fix that. ITP is a bit more complicated than that and you can't really fix it. You can manage it.

Many times, the liver is the site of destruction, not the spleen, so splenectomy is sometimes done for nothing. Also, sometimes after splenectomy, the liver can take over the destruction and when that happens, the splenectomy fails.

Thanks Sandi - knowledge is power! I feel weak and light headed today but at the same time smarter and stronger.

Wish I didnt have to welcome you to the itp club, but welcome.....very confusing conflicting information out there. Sandi pointed out to me once about checking dates when reading different articles since recommendations change. Good luck with your learning and your counts. I have a thread on here about my diagnosis and treatment course. I am new to this as well only started this past June. Right now my hemo is really pushing for a splenectomy since nothing else has worked, but I am still hoping for another solution.

when they first took a platelet count from me at the doctors office my count was zero also. within an hour at the hospial my platelet count was two then so you are not alone all ours counts have been different but we are or have all been in the same boat.

I did get in for a round of Rituxan today. I had very minimal side effects. In fact, the side effect from the Benadryl were more intense. I feel luck for that. I have a pre-scheduled lab appt tomorrow and while I realize that the Rituxan won't give me a big bump in platelet count and takes a while to get things going I am still hopeful for higher counts so I don't have to be readmitted to the hospital. Thanks everyone for the great advice and support!

Larry,
I don't think you indicated what exactly your symptoms were, many people are NOT hospitalized even with counts that low. If you are not having active bleeding you might want to push back a bit on the hospitalization.
Erica

Thank you eklein. This is still a bit of a roller coaster for me. I had Rituxan on Wed. On Thursday my count was 1 so they readmitted me for two rounds of IGIV - one Thursday night, one Friday. I am being released today with a count of 41 but I'm really tired. They are hoping that the Rituxan will help me retain what I just gained. I think my biggest battle is with the side effects of 80mg of Prednisone (tired, restless, dull headache, not dizzy but not right, raspy voice, over emotional). Two docs brought up splenectomy again over the past three days but being diagnosed just two weeks ago I am not going to start handing out body parts just yet.

I think what I need is more energy to do more research so I can discuss treatment rather than learn as I go. Knowledge is power, right? I have read about some of the other treatments people have had but am wondering if there is a set sequential order of when different things should be tried. I realize we are all different and will respond to treatments differently. Thanks to the great people and info on here I will now keep in mind that treatments and results will be different for women and men too.

Monday I will return to the clinic to check progress, Wednesday is another round of Rituxan.

Larry:

ITP can be a roller coaster. It's been described like that many times. It would be unusual if Rituxan held your counts at this point. Most don't get a response for weeks. It just doesn't work that fast. It takes time to knock out the B and T cells that produce the anti-platelet antibodies.

Prednisone has done that to all of us, wicked drug. Sometimes it gets worse as you taper, so you might want to be prepared for that. One man here a while ago claimed that he was able to dodge all of the side effects by watching his diet and exercising every day. He's been the only one.

No, there really isn't any order as to which treatments should be first, second, etc. There is a certain protocol and some are listed as first line, second line treatments, etc. But it does not have to be followed. Steroids and IVIG are first line, but IVIG is more of a rescue treatment and not a remission or maintenance treatment. There really isn't any difference in treating men and women...the treatments are the same. The results of course vary but that doesn't have anything to do with gender. Danazol is the only treatment that is easier on men, but many women have been on it too, including me.

Larry - have you gotten a second opinion yet? I know you were thinking about it, and it's been a week so I was curious.

I had a hematologist that I liked, but he was way too reactive to my ITP, because he actually didn't have a ton of knowledge about it. It was difficult finding someone who was better, but I kept looking, and finally when I found my current hematologist - well, my treatment has been like night and day.

For me, 2011 was all about treatments - IViG, Winrho, rituxan, prednisone, dexamethisone, three hospitalizations...just a battery of stuff, one right after the other. He kept telling me he wanted me to get a splenectomy, but I really resisted. I just felt like I'd like to try to find out more first - to try other things, to know more...

When I finally found my current doctor, his entire approach to ITP was so different. We stopped focusing on the numbers and started focusing on me, and how and when to manage my ITP. He allowed me to go drug free (not an option for everyone, but it was for me). He allows me to decide when it's time to treat. And most importantly - he has never mentioned splenectomy.

So if you haven't found that golden doctor who knows ITP - keep looking. Ask your current hematologist - that's actually how I ended up with my new one! Don't give up in the research fight. No doctor will "fix this", but you can find a hematologist that helps you on your journey.

Hi Kittie - Thanks for checking in on me

I did get a second opinion and the advice was to wait on more Rituxan until AFTER a splenectomy! EEK - not what I was hoping to hear! I have felt good about the level of care my first Hematologist has been giving me. A week ago I came home from the hospital after two rounds of IVIG. I had labs the following Monday and my count was 162! Wednesday the count was at 167. The hematologist called me himself with the lab results both times and he did say that while those numbers are fantastic they could still bounce around a little bit. He also reminded me that the IVIG was a quick fix that was necessary because I was back down at a found of 1.

Yesterday I had a face to face consult with my hematologist just before getting a second round of Rituxan. We were talking about the current treatment plan and I told him that, based on what I have read and the advice I had been given, I would not even consider talking about a splenectomy for at least 6 months. His response was, "I think that is a wise decision... 6 months from now we won't even need to discuss it if we continue to see positive results with the current treatment and follow-up management." He also talked with me about not making this a numbers game (even though it is the one thing that makes sense to me with all of this). I think he knows what he is doing and based on the other stories I have read on here I think he is following an appropriate and typical course of action. He has also taken care of a lot of paperwork and sent information and personal emails to my employer (with my request/consent) which has helped a LOT. I think his initial "fix this" comment is being taken the wrong way.

My count Friday was 132. Still great and round two of Rituxan was side-effect free. I was given the green light to start the very slow draw back on the prednisone and have gone from 80 down to 60mg for this upcoming week. Its hard for me to focus on symptoms of ITP because I'm still kinda hung up on the side-effects of the prednisone. As of now, I don't have any real physical signs if ITP with the exception of my poor bruised arms from when I was in the hospital weeks ago.

So that was a long answer to your question Kittie... I think I have found the right doctor. I also want to restate how happy I am to have found this site and all of the kind people that are educating and supporting me on this roller coaster ride.

Hi Larry,
You have come to the right place for information for sure. I was diagnosed with ITP 2 years ago, and have had limited success with keeping my platelet levels "up". I did have a splenectomy with no success, and IVIG infusions, and now Ritaxim treatments have started. Hopefully this will help, but optimism is key !

SInce I found the PDSA and this site about six weeks ago, I have learned more information about ITP from everyone here and the PDSA than I have in 2 years from my doctors and others. I am so thankful for PDSA !!!! I have found that many medical staff - emergency rooms, etc don't know a lot about ITP.

Good luck and know you aren't alone.
W

Update from the IVIG after a week dropped from 105 to 27 went back two weeks down to 15 have an appt to c my hema wednesday to discuss other options

Larry - it sounds like things are going better with your doctor - that's good! No, we don't like that second opinion either. Sometimes it can take a while to find one that is up to date and modernized.

About the numbers; I understand that it is the only thing that makes sense to you now. In time though, you find that living by the numbers can make you crazy and cause lots of stress. The only way around that is to stop focusing on today's count, next weeks count, etc and take a good look at your body. If there is no serious bruising or bleeding, you go on with your day. When most people get to that stage, they then become obsessed with every little bruise or pink dot. They scour their bodies in the shower and get upset about a little bruise they got when they whacked their thigh the day before. Finally, you get to the next stage which is kind of the "eh, whatever" stage. You stop looking, stop obsessing and just go on with life and take things as they come.

In my first year of ITP, I woke up one morning and had purpura all over my chest. Dark purple splotches. I'd never had that before, only petechiae, so it freaked me out and I thought my count was really low. I went to work, but ran out for a count at lunch. It was 50,000. I felt like a fool for overreacting and went back to work. Point is, I learned that even having symptoms does not mean the count is low. I've also had an armful of petechiae with counts over 200,000. Turns out I'd slept on my hand and cut off the circulation which caused the petechiae. In time though, you do learn the difference and know when to get help. You also learn that low counts themselves are not always a medical emergency. You'll get there.

Hi All,

Larry, its been a while since you posted. Any update you can share?

Jay