Doxycycline long term use: Hi, I’m 11 months... - CLL Support

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Doxycycline long term use

Smiley60 profile image
7 Replies

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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mrsjsmith profile image
mrsjsmith

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.

Colette

Smiley60 profile image
Smiley60 in reply tomrsjsmith

Many thanks for your reply Colette. I was put on 100mg Doxycycline by my haematologist as a prophylactic. I’ll keep it under review.

Kind regards and all the very best

Angela

SofiaDeo profile image
SofiaDeo in reply toSmiley60

Prophylactic for what? Do you have a history of infections? Do you travel a lot?

Doxycycline is approved for malaria prophylaxis, so here's a link for evidence from long term use to date.

ncbi.nlm.nih.gov/books/NBK5...

Interesting to note there's some data that doxy may help with cancer.

Eric70 profile image
Eric70

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.

Smiley60 profile image
Smiley60 in reply toEric70

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.

Kind regards and best wishes, Angela

Eric70 profile image
Eric70 in reply toSmiley60

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.

angelikab profile image
angelikab

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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