Hi everyone, hope you are all ok.
This week my 18 yo daughter was seen by rheumatologists at St Mary’s in London.
(following open heart surgery for rheumatic heart disease 5 weeks ago at Kings)
She has been told that she should take long term penicillin, into her later adulthood, into her 40’s, potentially indefinitely, to protect her heart from further damage triggered by strep A infections.
I had previous knowledge about this long term therapy for children, to prevent the heart disease (something that she should of had throughout her whole childhood following an infant illness that hospitalised her - eventually discharged without a known or unexplored aetiology)
Since she didn’t receive this therapy it has resulted in moderate - severe rheumatic heart disease.
I asked her surgical team about the penicillin therapy and was told it wasn’t necessary. Now rheumatology are telling her that it is absolutely necessary. Ultimately her choice but they highly advise it.
Is anyone else taking penicillin therapy who can advise me? How you are getting on with it? Are you experiencing any adverse affects?
I’d greatly appreciate some clarity.
Thanks all
Hi @Melanie.G I don’t have any experience of penicillin prophylactic therapy, but for the last two years my late husband was subject to repeated (constant) UTIs and the GP said if we could only knock out the infection he would favour a low dose prophylatic course of antibiotics (Graham was allergic to penicillin!) to keep the infections at bay. It was certainly taking it’s toll on him and even the GP would just agree to more antibiotics if I phoned to request them as he knew I was experienced enough to spot the symptoms that the infection was back - and he wouldn’t bother waiting for lab tests before starting.
Unfortunately Urology were not so keen and before we could do anything he passed away from other causes.
In essence I would suggest you see if the Surgical Team would liaise with rheumatology and maybe tell them to “talk to one another”!!! We had similar issues with one department contradicting another and I felt like I was a moderator stuck arguing with them both.
Sorry not to be more constructive. Best of luck and I hope your daughter recovers from the surgery.
Hi @Melanie.G - Same here, I’m afraid. My Mum had dementia and a long-term heart issue caused by a faulty valve that was the source of a regular infection. We were discussing the use of prophylactic penicillin, but by the time we’d come to an agreement to start, the dementia finished the job and she passed.
But what I did was look into the NICE guidelines for prophylactic antibiotics for her specific condition. It gives a lot of detail about contraindications, dosages, etc. I suggest you try that.
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