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Penicillin - Post transplant

Hi all,

I haven't posted for a long time but often read posts on the forum. I just wondered if Sandy or anyone else can advise me.

I had my transplant 6.5 years ago at 24 and have been clear of CML ever since; I was discharged from my local hospital last year and now attend Kings annually for tests.

I was initially told I would have to take Penicillin for the first 5 years post transplant. To be honest I haven't taken it for 4 years and haven't had a single infection and have lived a completely normal life. I visited the consultant last week and was told I need to take it for life so have a few questions.

Do any of you know what the long term affects on the spleen are post transplant? Is its function severely compromised? Do any of you not have to take the medication? What is your knowledge of this? Is Penicillin prescribed for all transplant patients worldwide for life?

Many thanks in advance,
Martyn

Hi Martyn, glad to hear you're doing so well post-transplant. I had my BMT Sept 2011. I have been told I will have to take penicillin for life. The reasons if I remember rightly were because the conditioning treatment damages your spleen in certain ways and means that certain functions (which I'm afraid I can't remember :)) are impaired. I did question taking this drug for life, wondering if the affects would wear off, but apparently for the reasons we have it, it will still function in this way and support the spleen long-term. Hope it helps!
JO

Hi Martyn,

I had my spleen removed at diagnosis and was told that I had to take antibiotics for life. I was not happy to do this and had quite a few disagreements with medical staff. I did agree to vaccination cover- particularly to protect against pneumococal (sp?)virus which a-splenic patients are in greater danger than others of overcoming. However, I have continued to refuse to take life-long antibiotics . This is against all medical advice and of course I take full responsibility for my own health.
I did not know that those who have had transplants, but still have their spleen in tact, are also advised to take antibiotic cover for life. Did you have TBI? if so did that damage your spleen?

Sandy

Thanks for the response Sandy,

I'm the same, as I said in my initial post haven't taken Penicillin and have been fine with no infections for years. No I didn't have TBI which is why one of the reason I queried it. I also had all of my vaccinations post transpolant although I don't have the flu jab.

Before my 5 year anniversary was up I was told I would only have to take Penicillin for 5 years and it seems as if they've changed their procedure. The Dr I saw said although I've done remarkably well technically I'm still at risk of certain infections which are life threatening; but isn't everyone?

I'm know medical expert but surely if I keep taking Penicillin my body will start to rely on it and eventually become immune to it. This is one of my concerns that they just seem to dismiss.

Are all patients classed as a-splenic post transplant?

Many thanks,
Martyn

Hi Jo,

Thanks for the response; I hope your doing well.

As I said in my response to Sandy I also feel that my body will start to rely on it and I've done well so far without it. Don't get me wrong I'm very grateful and fortunate things have gone so well, I just want to find out what the true affect on the spleen is and if long-term it will actually benefit me.

I'd be interested to find out what functions of the spleen are impaired if anyone knows.

Many thanks,
Martyn

Hi Martyn,

Being 'Asplenic' just means you have had your spleen removed for one reason or another. Many people who have damaged spleens...i.e through road traffic accidents etc.... have to have them removed. If the spleen is ruptured for any reason you can very quickly bleed to death.

In the case of CML, the spleen becomes involved as the disease progresses to more advanced stage..as in my own case, my spleen was very enlarged when I was diagnosed which is why my doctors considered my disease was quite advanced even though my wbc was only 17! I later learned that this was because most of my CML cells had taken up residence in my spleen which was why it was so swollen.

This was a good few months before the phase ll trials for imatinib (then STI571) were due to open in the US. I was due to go for transplant and so my spleen was taken out for safety as well as clinical reasons.

I am not aware that pre-conditioning chemotherapy would have adversely affected your spleen- you did not have TBI so I cannot see why your spleen would be under-functioning and therefore affecting your immune response. I was told be a couple of haematologists who worked in the Asia/pacific region that they did not routinely give anti-biotic cover to their asplenic patients because the bacteria strains in question were already resistant.

Really this is entirely down to you and how you feel. You could just keep on having the conversation with your consultant and get to the bottom of why you are now being advised to do this 5 years down the line from transplant with your spleen intact!... is it that you are really at risk (like we all are) from this kind of opportunistic and very serious bacterial infection (which is I believe resistant to all antibiotics presently in use- which is why it is so difficult to treat) or is it that doctors in general are becoming more and more risk averse and are taking steps to cover themselves should you pick up this strain of bacteria. It is a risk we all take- life is full of them...
on questioning my doctor did admit that it was rare- but more of a risk for those without spleens.

Try a search on this subject- I am sure there are lots of articles on the web, which might or might not change your mind. Always best to be fully informed ;o)

Good to hear you are doing so well by the way,

best.. Sandy