I'm at a loss

I am very new to this thing called ITP...I have been on prednisone for 4 weeks now. I'm currently taking 110 mgs daily and it is doing nothing at all to help. Yesterday, I went to have an IVIG infusion and I had a reaction to it so they had to stop the treatment. My platelets are down to 12 now. My doctor said I need my spleen removed and has set me up for a consult with a surgeon tomorrow. I'm wondering IF and WHAT can be done BEFORE we take such drastic measures...I have not had any other testing other than to look at my platelet count (CBC). So surely there must be some type of other testing to do before removing a major body part. My doctor is also ordering a bone marrow biopsy however they said they want to schedule it the same day they remove my spleen. You would think they would want the results of the biopsy first just in case there is something going on there...I'm at such a loss and would greatly appreciate any advice. Sincerely, Kelley

Hi Kelley, Welcome to the site. You've come to a good place for insight, though I would encourage you to do your own research and take any advice (including mine!) with a grain of salt...none of us here are doctors.

You are right to question having surgery without a second opinion and/or more information (IMO). When my first hematologist told me it was time for a spenectomy I went for a second opinion....and 12+ years later I still have my spleen.

I'm not sure where you are, but if there is a major university close by, you can google their medical department and look for a hematologist whose interests are "benign hematology", "platelet disorders" or something similar. The hematologists/oncologists who mostly treat cancer are likely not going to be up-to-date on recent ITP theory and practice.

I'll let others chime in, but wanted to welcome you and let you know I think you are right to ask questions and gather more information before surgery...unless you have severe bleeding symptoms, of course!

Thank you for responding so quickly and for the advice. I live within 2 hours from a major medical facility and I'm sure I can find another doctor who lke you said has more knowledge of ITP. My current doctor also treats cancer patients so what you said rings true to my ears. It is encouraging to be here on this site and be able to read/educate myself before I go forward with major surgery. Again, Thank you!!!

Hi Kelley,

Welcome and nice to meet you and sorry to hear that the treatments you've received so far are not working.

There are many members of this site who have been providing their advice and sharing their experience for years and you'll find all the support you need here.

I'd definitely hold off with your spleen removal, as you read through older posts on this subject you'll see that not only it does not always put you on remission but also there are so many other treatments to try before resorting to this surgery. The recent recommendation I saw was to wait at least 12 months before considering spleen removal as sudden remissions can happen plus there are still many options to try (some of them listed under "treatments"section)

I'm quite new to ITP as well so will wait for more experienced members to provide more information but just wanted to welcome you here.

Ania

Spleen removal? Let me put it this way; If you had a brain tumor, would you want the treatment from 1911, or the treatment from 2013?
Back when leeches were still in the doctor's bag of tricks, 40 years before Prednisone (heck, 17 years before there was even Penicillin), a splenectomy was the 'modern advanced' treatment for ITP.
Suffice it to say that medicine has come a long way in a hundred years and, thankfully, we have more options now.

Note: Everyone is different and a splenectomy does work for some. But it isn't a magic bullet, it's irreversible, and it comes with it's own set of life-long issues.
.

Hi Kelley:

You've come to the right place for information. The PDSA is the most up to date source you will find. Another very credible source to search is:

www.bloodjournal.com

This is an excellent video presentation given by one of the top Hematologists in the world:

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

There really aren't any special tests to confirm ITP. It can usually be diagnosed with a CBC and making sure the patient does not have any unrelated symptoms such as weight loss, fevers, swollen lymph nodes, etc. The bone marrow biopsy isn't normally necessary either unless there is reason to suspect something other than ITP. Many doctors perform one anyway. It should be done prior to splenectomy though and yes, you'd want the results before the surgery.

The spleen never "needs" to be removed unless it is enlarged. That is a choice and it is just another treatment that may or may not work, it is not a cure.

A second opinion is a good idea. There are a lot of treatment options to try.

Hi Kelley, I agree with Weirdjack and Sandi about spleen removal and it is not a decision to be made quickly. There seems often to be a tendency to push for spleen removal early on when an ITP diagnosis is made and when the sufferer is in a scared and confused state ,and the large of steroids are having their worst effects and impairing your judgement. Remember you cannot reverse splenectomy but can stop any other treatment. There are plenty of treatments out there to be considered. Good luck ,Derek

Sandi,
I watched the entire video you recommended:
fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html
and enthusiastically second your recommendation!

The relevant high points:

• He NEVER does splenectomy
• Target levels of platelets differ between patients, and can be MUCH lower than common guidelines suggest.
• Thrombopoietins have great potential
.

The video is well over an hour, but well worth the time.

I'm glad you found it helpful and I'm happy that we have access to it. I've seen it 2 or 3 times. It does have some annoying repeating of segments, but I just skip that part.

Hi Kelley! I'm Valerie and was diagnosed dec 2012. I have been a member sic and rad every article posted and talk to many others on a daily basis. I was in a similar situation in Mach, I had failed Rituxin, steroids,,..he though I also thought I did not respond to Nplate. Well that turns out he was not dosing it correctly and not giving it at correct times.

He then said h wanted my sleen out because nothing else works and didn't want me to live on IVIGs. Well from everything I learned on here, I decide against splenectomy and decide to see a specialist at Cleveland clinic. I am on cyclosporine and Nplate and figuring out doses but my numbers have been good.never once has he mentioned splenectomy.

My advice is to find an itp specialist.... Even if he's 4 hours away. It can change your life. All this guy does is see patients with itp, do research and attend conferences.


Valerie

Hi Kelly ,
I found out last Sept that I had ITP , my platelet count was at Zero.. I took Prednisones for 5 days and it didn't help.. My DR said that spleen had to be taken out . 2 weeks later they did just that.. It did not help me..and all the treatments I got at the Cancer CEnter and the meds I'm taking now still doesn't help me. My levels are at 20,000 now and the DR still doesn't know what's causing my condition ..
Wish u all the luck,

jchirs:


There is no known cause for ITP and if you did get an answer, I'd probably be suspicious since it would most likely just be a guess. Most people have to take Prednisone for much longer than 5 days for it to work.

What have you tried?

I am def going to watch that asap

My levels are at 20,000 now and the DR still doesn't know what's causing my condition

And honestly, it is likely he never will know what is causing your ITP. Most of us will never know why or what. After 10 years, 'what caused my condition' doesn't even cross my mind any longer.
You have 20k count? Cool! Enjoy that! Unless you are having symptoms (bleeding and such), 20k isn't bad. I wish my count was that high right now.
.

Kelley,

Hi, I was diagnosed in February of this year. I spent the first month or so completely in shock and then the rest of the time has been a cloudy mix of hopeful, disappointed, and back to hopeful. I've so far failed three treatments and am in the process of starting NPlate this week.

My advice would be to read, read, READ! Read any and everything you can find because the more knowledgable you are, the less daunting it will all seem. If there are medical terms you don't understand, do what I do: look them up. Seriously, there is so much information out there and especially here on the PDSA forums. It helps to know you are not alone in this and that people DO live full and amazing lives with ITP; it is just a matter of finding what will work for YOU!

Arm yourself with knowledge and it will help you take a more active approach in your treatment. The best tools for dealing with ITP (I have found) are:
1. a hematologist who will LISTEN to you and take the time to answer any questions you have. (Mine spent 1 hour and 15 minutes with me Friday).
2. a support system of ITP patients who have been there, done that and who are supportive of people ddealing with ITP (Just like here!)
4. INFORMATION.
3. PATIENCE. Not only with yourself but with others and with different treatment plans. Not everything will work for everybody.

Best of luck to you and I hope you are feeling better very soon.

AmyB

PS Prednisone is the devil's portal and I HATE it...praying you will be able to get off it SOON!

Hi Kelley,

I am 27 and have had itp for 10 years if i was you I would get an opinion from one more doctor when i was first diagnosed they took my spleen within a month. There are also more treatments now then their were then. Oh yeah needless to say the spelectomy for me did absolutely nothing, but it does work for some.

Good luck to you,
Keli