I could really use some input/advice.

Hi everyone,

I'm at a crossroads in my ITP journey and would really appreciate some input/advice.

A bit of background: I’m 33 years old; originally from BC, Canada but now living in Australia. I was diagnosed when I was 16 with a count of around 7k and over the next five or so years went through the usual lines of tx (in Canada): very high dose prednisone upon initial diagnosis (worked a treat but not without the awful side effects); a few rounds of WinRho/Anti-D (got me up around 80k initially but bottomed out again within a week); and IVIG (used it regularly and successfully for a few years until I suddenly started developing aseptic meningitis each time, 48 hours after infusion like clockwork).

Once I started reacting poorly to IVIG we adopted a watch and wait approach. My counts stayed more or less in the 10-20k range; I took a short-term dose of around 25-50mg pred anytime I needed to jack them up a bit for something, and I was good with this. I’ve always been very fortunate in that my only symptoms are bruising and a bit of petechiae (no bleeding).

I moved to Australia in 2007 and went through a long period of very little monitoring and no intervention (aside from short term pred as needed), with no problems. However, over the last couple of years I’ve noticed my counts no longer stay above 10k (no change in symptoms though). Tried Rituximab with zero effect last year, and now I’m facing a splenectomy as in Australia apparently you can’t access Nplate or Eltromopag unless the splenectomy fails.

I would love your thoughts on the following:
1. My husband and I want to start trying for a baby- with that in mind, would you do the splenectomy? Or put another way: what would be your thought process in trying to make that decision?

2. In Australia they recommend you take antibiotics for life post-splenectomy, which I am not at all comfortable / know I won’t comply with. This isn’t the recommendation in Canada, is it? What are others' thoughts on this issue? I’ve done plenty of research but any resources you have found useful would be much appreciated- I’m concerned about the potential longer term impacts of splenectomy as well considering my ITP currently doesn't really impact my quality of life (I'm one of the lucky ones).

3. Any other advice/thoughts you have?

Thank you so much for taking the time to read this.

Cheers,
Sam

Hi Sam,

Sorry to hear you've had to deal with itp for so long - seems like the last few years have been gentle on you - treatment wise at least.

I am 32 and was diagnosed with itp in dec 2012 when my hubby and I had just started trying to conceive #2. We have a daughter who is now 3 and a half. All of my questions to my haemo have been regarding itp and the possibility of pregnancy. In the beginning I was on 60mg of pred - which in itself messed my cycles up so I pretty much knew if have to be off it in order to get pregnant. I've done ivig which worked ok. I've tried mycophenolate (an immunosuppressant - you can't get pregnant whilst on it due to the possibility of birth defects - but can 3 months after last tablet if you get a remission) but it didn't work for me. Then I had an indium scan which showed my platelets were being destroyed mostly if not entirely in my spleen. My next choice was going to be splenectomy but I was very lucky & in November 2013 my counts jumped to 100 and stopped at around 40 after tapering the steroids.

I have polycystic ovaries on top of all of this so still no pregnancy for me although we're still trying!!!

I chose to opt for splenectomy over rituxan (can't try for 12 months) and tpo's (can't try whilst on them) because I still want a baby so much. I prioritised that desire over the possible long term side effects of splenectomy. I did that with as much information as I could possibly get though. I still haven't had a splenectomy but it's waiting in the wings as my next option if these counts don't hold through fertility treatment. Is there any possibility of having an indium scan in Australia?

Eta: regarding the antibiotics for life after splenectomy I'm not so sure either. I'm in the uk & when I asked my haemo about it he said that he's willing to consider that based on an individual basis. However, as the mother of a young child who attends nursery and has frequent exposure to lots of bugs he would not be happy if I didn't comply with taking them daily at least until my daughter leaves school. That's not a consideration for you now but it might well be in the future!!!

Hi, I was diagnosed in 2003 and had my spleen removed 7 months later since prednison didn´t seem to work. I went into remission counts above 250 and have been ever since (now 11 years). I´m from Iceland and here you don´t have to take antibiotics. I have never been sick this 11 years but if I get a high fever, I need to go to the hospital to check for a bacterial infection.

kind regards
Jonsdottir

Hi Sam. I was diagnosed in 2004 and had my splenectomy in 2006. I wasn't even on antibiotics after it. I was told if I ever had a sore throat or fever, I was to get to my doctor or the hospital asap. I don't do that tho. I wait and see what happens. I've only been sick a couple of times since then. I was hoping some other fellow Canadians would chime in. I know here in NB it's not necessary to take antibiotics for life.

Hi Sam,

Im in the US and had a splenectomy in 2000. Here there are no specific recommendations for taking antibiotics for life after splenectomy. My hema told me to always get checked out if I have a fever over 101. In the past 10 years I have only taken antibiotics a couple of times, for a strep throat and a UTI.

Getting vaccinated before a splenectomy is important. There are certain encapsulated bacteria that are hard to deal with without a spleen. But, you are not more prone to get typical illnesses like colds or sore throats.

Dru

Cindy:

I am not an over-reacting type of person, in fact, I tend to push the envelope most of the time. However, I am worried about this "not going to the ER with a fever" jazz you are talking about. I wish you'd re-think that, please. Not having a spleen can be very dangerous if you happen to have pneumonia or something. Erica and I have both had pneumonia and were barely coughing, didn't have the typical symptoms. It happens.

Cindy I worry about it too. The problem with the splenectomised is that when they get an infection it can take off rather dramatically. The same is true of those with low Ig like me. I'm on daily antibiotics because if an infection comes along it'll give me time to get help before the infection really takes off. The antibiotics give a sort of breathing space. If you're not taking the antibiotics then you do really need to get to a hospital if you have a high temp or other problem in order to get prompt treatment.

I know I should; hubby keeps telling me the same thing. I'm just not the kind of person who runs to the dr./hospital for every little thing. I've been real lucky that even when I do get a fever, which isn't very often, it's not a high fever. I do take precautions; if I know someone is sick, I avoid them, I wash my hands often. Steven gets perturbed with me if I don't call the dr. for a sore throat. I've been lucky since my splenectomy in /06 I've only been really sick twice, 3x's at the most.

Well, let me tell you about someone who used to be here years ago. She'd had a splenectomy and recently had Rituxan. She went on an anniversary trip to Hawaii with her husband. While she was there, she got sick and within 18 hours, she was dead. She became septic and it spread so fast the hospital couldn't save her with IV antibiotics. Sepsis can grab hold very fast. There are other stories I've read about, people who had sepsis and did survive, but two that I know of had limbs amputated because the arms and legs became necrotic. I wish I could find the pictures of those because as graphic as they are, it can change your mind about fevers. Pneumonia and other bacterias can still affect an asplenic person even with the vaccinations.

I'm not a run to the ER person either and tend to ignore things because I don't want to over-react or make a fuss. But the last few times I've had a fever, I did go because I've realized that when I do get a fever, something really is wrong. I take a lot of anti-inflammatories that mask fevers and if it breaks through that, it's serious. I also take immune-compromising meds and have a low white cell count - dangerous combination.

You've been lucky, woman, don't push it!

I know, Sandi, I know. (head hanging down in shame) I think I remember the one you're talking about.

cindy i'm with sandi and ann and worry too!! you can stay away from sick people but it isn't always people who make you sick. the person I know who had sepsis got it and had been feeling fine, bam sepsis - cause, a uti she didn't know she had. she was at deaths door but did recover, a long hard recovery.

behave!!

Yes ladies, I'll behave! :laugh:

Thank you all so much for your experiences and advice. I received all of my vaccinations (pneumococcus, meningococcus and haemophilus influenza type b) last year in case I decided to go ahead with the surgery, so I'm good to go in that regard, and I'm crystal clear on the need to keep up with any boosters required for any of those as well as to go straight to hospital should I spike a fever or experience any other systemic-type symptoms of infection. I feel confident as well that should I go ahead with the surgery, my decision to reject daily antibiotics is a reasonable one after having several of you confirm that in your own countries (including my Canadian motherland ) antibiotics post-surgery are not necessary / part of the recommended guidelines.

What I'm still struggling with, though, is this feeling that I'm trading one risk for another...and that I may actually be at GREATER risk than I am currently for some sort of catastrophic event if I do go ahead with the splenectomy. The risk of a brain or other terrible bleed due to having a low platelet count is, from what I can tell, extremely low (though I understand this risk increases substantially with age), and it seems like the risk of sepsis from an infection when you are asplenic is, while still rare, substantially higher (at least at this point in my life given I'm still pretty young).

I'm struggling with deciding whether I a) decline the splenectomy and get through my childbearing years with sporadic use of prednisone as needed as I've been doing for the past several years, and when we eventually move back to Canada in about 5 years time try my luck with Nplate or Eltrombopag (Canadians: you don't have to have a splenectomy to access those, do you? In Australia you do!) OR b) do the splenectomy, cross my fingers and toes and hope it works, but if it doesn't, essentially wind up back at option a (though I wouldn't have to leave Australia to get Nplate or Eltrombopag at that stage).

I'm really torn and just not sure which way to go

Sam:

I'm sure that would be a tough decision. I'd already had my kids by the time I was diagnosed. Whatever you do, it will be the right thing because you thought it through. Good luck.

Hi,
had spleen removed in 2010.
It had worked for my mom , I have had a partial success, but never had I heard
you need to be on antibiodics for LIFE ?? ( though I do need reg-Flu-shots ),
and thanks to other posts (THANKS Sandi), I will definitly reconsider going to the ER
now!
btw: i'm a 56 yr old male,so i will not touch your 1st question.


THANKS
SUPERDAVE-STAY POSITIVE