Hi, I’m 11 months into my 15 month treatment for CLL.
I’m on Ibrutinib with Venetoclax and it’s suited me well, and I’m really pleased that my bloods now appear to be normal.
I’m also on Co-Trimoxazole antibiotic and Aciclovir antiviral to deal with any infections should they arise during my treatment and I don’t have any concerns about them.
My concern is that I’ve been on Doxycycline antibiotic throughout my treatment but I’m reading now that it’s not wise to be on doxycycline long term? Can anyone offer any thoughts on this please? My consultant has said to continue with Doxycycline however I know that the pharmacist is not comfortable with me remaining on them.
Many thanks
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Smiley60
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I am not a pharmacist but I would agree. What was the reason you were put on it and was it by haematology ? Does your haematology department have their own pharmacist ? Mine does and she is a fountain of knowledge. So worth checking. Sorry last question, is it a full dose or prophylactic.
I have been on Doxycycline now for 5 years, and have had no side effects. My Specialist put me on them due to my constant serious eye and sinus infections. I have had no problems with eyes or sinus issues since. No one has mentioned any problems with their long term use at all, so I am quite happy to stay on them, as previously I was constantly visiting my GP or hospital. I much prefer Doxycycline to the eye drops I was using previously, which never really seemed to help. Best of luck in the future Smiley60.
Many thanks for your reply Eric, it sounds like Doxycycline is working well for you. I continue to keep my situation under review, I find it useful to check in every now and again for advice and reassurance and to remember we’re not alone.
Like you, I don't often post on Health Unlocked, but I do read the posts daily and find it helps a great deal. I am lucky, I had Chemo almost 7 years ago now, and my specialist tells me they expected me to require treatment again after 3 years. However, my CLL has remained stable and this only happens in about 10% of cases, so I've been extremely lucky. Regards Eric.
hi I have CLL too and have been on very low dose Doxycycline for many years. It is prescribed by my Opthamogist and has helped me with my eyesight and I’ve never had any pushback from other doctors. But I think it’s only 20 mg per day. My sight is great and I have no side effects.
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