Introduction and questions!

Hi, I am a 44 year old female and was diagnosed with ITP when I was 13. Most of my life my count has been up and down (until splenectomy never above 70) with quite a few bleeding episodes. 5 years ago, things went crazy, my platelets ended up going down to 0 on three occasions causing widespread bleeding under the skin and mucus membranes. Prednisone completely stopped having an effect, had platelet transfusions, IVG and immune suppressants combined with dexamethasone when this toxic mix kept causing me to have overwhelming infections and barely kept my platelets above 30 on a good day they had no option but to perform a splenectomy. They told me that it was unlikely to be successful and if it was that it was likely remission would not last past 5 years. For 4 years my platelets have been up at 250! Because of my history of dangerously low platelets and having major infections my UK doctors wanted me to be on a low dose daily antibiotic for life. However, since moving to Canada, the doctor here refused that treatment and said it was unnecessary and that he had never heard of ITP returning after a splenectomy so I went with his advice and stopped the daily antibiotics. Since September I have been struggling with infections and viruses ... not sure if it is just one that I cannot shift or I keep getting reinfected (I am a teacher), they did a routine blood test and for the first time since my splenectomy, my count is down to 70. I know this is 'high' and 4 years ago, I would have been so happy to have anywhere close to that number but I just feel angry and upset that perhaps this could have been prevented if I had, had better care and these infections had been prevented. I am trying to tell myself the ITP would have probably come back anyway, but I feel like the infections have just caused my immune system to kick off again and who knows where this will lead!

I guess my question is, has anyone else had complete remission after splenectomy and then had an infection start their ITP up again, or do you think it was just time for this to happen, 4 years after my surgery, and not linked to the infection? Has anyone else been considered such high risk that they have been advised to take daily antibiotics after a splenectomy? Finally, is it likely that without a spleen, my count is likely to stay up in safe, although low levels ,or has anyone here with a splenectomy ended up with platelets below 10?Just trying to figure out what my possible prognoses could be for the future.

Hi Kym, I think you need a new doctor. I knew going into my splenectomy that it might not work (and it didn't). I am not on any antibiotic. Only use them if needed.
I'm in NB.

Yes, I think I need a new doctor too! I am going to wait until I get an appointment with the haematologist though so there is some continuity and I don't get left back out in the cold. Fingers crossed that this is just a temporary blip!

Kym the only sure thing about ITP is that nothing is sure.

Is your doctor in Canada a hematologist? To quote what you said your doctor said: "...and that he had never heard of ITP returning after a splenectomy..." - he is so wrong! I was told that my body will always make the antibodies that attach to the platelets signaling the body to destroy those platelets - there are more places in the body than the spleen that cleans the blood. A splenectomy is not a sure cure, that is why I have kept mine - and yes to answer your question there was a woman in our ITP group in town who had a splenectomy and her count went back down I believe to around 5,000.

Maybe you should see an immunologist to see why you're getting constant infections.

kymtendo wrote:
...
I guess my question is, has anyone else had complete remission after splenectomy and then had an infection start their ITP up again, or do you think it was just time for this to happen, 4 years after my surgery, and not linked to the infection?

Off hand, I don't recall anyone suggesting an infection triggering one's ITP. And with that, splenectomy or not, relapse (EBV replication?) at anytime would seem the norm.

Has anyone else been considered such high risk that they have been advised to take daily antibiotics after a splenectomy?

I assume by 'risk' you mean risk of infection. I don't have a splenectomy but I thought antibiotics were managed by the person. That antibiotics were prescribed and made available. Then the individual decides when and if they need to take them.

Finally, is it likely that without a spleen, my count is likely to stay up in safe, although low levels ,or has anyone here with a splenectomy ended up with platelets below 10?Just trying to figure out what my possible prognoses could be for the future.

From what I've read here on the forum, only one rule comes to mind for splenectomy. Several folks have reported increased sensitivity to the various ITP treatments after splenectomy. But, just thinking about your slow count decrease, a higher baseline count seems possible. Likely though? I dunno.

You mention having taken immune suppressants. Do you happen to recall which you've taken?

Is it safe to say when Prednisone stopped working you were only taking Prednisone when that happened?

As you may already know, Promacta and Nplate are very common these days.

It is usual in the UK to be advised to take daily antibiotics after splenectomy although some doctors don't follow the guidelines.

Nobody can say what's usual after splenectomy. Some fail immediately, others fail later with people having counts below 5 and needing treatment. Others settle down with a lowish but safe count. Much like everyone else really who still have their spleen.

I will try and answer all your questions ...

So from being a small child I had issues with lung damage from untreated whooping cough/pneumonia (long story) Every year I would get pneumonia and bronchitis several times. As I got older, I would just get it once or twice a year but then when I was on steroids or immune suppressants, every six weeks or less I would end up with some kind of infection, mostly upper respiratory ie bacterial bronchitis or pneumonia but sometimes I would get infections and they were not sure where it was but my body was reacting to it, ie fever, high white count, plummeting platelets. I also ended up with sepsis once. Because of this, they said that it was really important after I had my spleen out to take the daily antibiotics. The moment I would get an infection when I was on the immune suppressants, my platelets would go below 10 and I would start bleeding spontaneously from my gums (without touching them, just pouring with blood) and I would be bleeding from the nose and have bubbling bruises on my hands and feet where I could literally watch the veins bubbling up and spilling into kind of bruise but more like bleeding under the skin. This was whilst being on Dexemethasone and Cyclosporine together (I had another immune suppressant before cylosporine but cannot remember what it was called, but it did not work either), hence the necessity to take out my spleen in the end. Anyway, they said that it was not always necessary to take daily antibiotics after a splenectomy but due to my history it was a necessary precaution because of the way my body reacted so aggressively whenever I had an infection. That is pretty much all I know.

If you have had sepsis in the past I cannot believe your doctor is refusing to give you prophylactic antibiotic cover. Time for a new doctor methinks

I would repeat my suggestion to see an immunologist. I did and it turned out I have an immune deficiency and now infuse a small dose of immunoglobulins every week, subcutaneously myself at home I hasten to add, which stops me getting constant infections.

JJ wrote: I would repeat my suggestion to see an immunologist. I did and it turned out I have an immune deficiency and now infuse a small dose of immunoglobulins every week, subcutaneously myself at home I hasten to add, which stops me getting constant infections.

I will definitely ask to be referred as soon as I get an appointment with a haematologist. Thank you for the advice

what province in canada?

johnmerrick wrote: what province in canada?

Alberta

kymtendo, thanks for explaining that.
Besides the infection recurrences, I'm taken back a bit by the Dex and Cyclosporine combination. Strong stuff. Fortunately Promacta and Nplate are available now. For that matter, I guess there are quite a few options available that you haven't tried before?