Doxycycline : Hi everyone. I am on rituximab and... - LUPUS UK

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Doxycycline

joannebond360 profile image
15 Replies

Hi everyone. I am on rituximab and having various frequent infections because of it, this one being a chest infection. I was out on amoxicillin but after a few days after it getting worse changed the antibiotics to doxycycline, I have just read that it can flare lupus, has anyone experienced this or has anyone taken it and been ok?

Thank you

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joannebond360
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15 Replies
Tigerlily4 profile image
Tigerlily4

Yes, me Joanne. I've been battling SLE, compromised immunity and various infections for 30+ years. Doxycycline, like all the tetracyclines, made me really ill while other a/biotics such as Amoxicillin and Cephalexin are no longer effective. I find Augmentin works best, with few to no side-effects. Hope this was of some help.

joannebond360 profile image
joannebond360 in reply toTigerlily4

Hi Tigerlilly.

Thank you for your repply.

I am so surprised the doctor has prescribed them knowing I have lupus. I haven't taken them for years and don't know how they are going to effect me.

I normally take amoxicillin for everything which is probably why they are less effective for me.

I wonder what it is that interferes with the lupus. Have called the lupus nurse to get some advice on what to do.

Jo

Hi Joanne,

Has anyone checked your gamma globulins as hypogammaglobulinaemia is a recognised side effect of Rituximab and some patients need IVIG infusions as well to combat this?

in reply to

bmcmusculoskeletdisord.biom...

joannebond360 profile image
joannebond360 in reply to

Hi. Thank you for your reply.

I've not heard of this and no not as far as I know. I know they check my B cell levels. The lupus nurse will call me back today so will ask her. Sounds like that could apply to me.

Jo

in reply tojoannebond360

I would Jo, the IGG levels are particularly important.

I was at a conference recently and it seems that young people are particularly at risk with hypogammaglobulinaemia and Rituximab.

Fennella02 profile image
Fennella02

Doxy makes me very sun sensitive thus more prone to flares. I'm happy to take it in the winter. Clarithromycin works well for me - I'm allergic to penicillin.

joannebond360 profile image
joannebond360 in reply toFennella02

Ah ok, I will take it then as it's winter. Will remember that for the summer.

Jo

misty14 profile image
misty14

Hi Joanne

I hope you get good advice today from the lupus nurse. I took doxycycline and had a flare so really wouldn't recommend it!. Sorry your suffering and hope your better soon. Roll on Spring!. X

EOLHPC profile image
EOLHPC

Am sorry you're grappling with this issue, but am vvv glad you posted because immunology have mentioned doxycycline for me should infection break through the daily antibiotic treatment immunology has prescribed ongoing due to my hypogammaglobulinaemia (way prior to taking immunosuppression, I developed consistently below range immunoglobulin G, A & M + lymphopenia), but immunology settled on clarythromycin instead of doxycycline for any breakthroughs

The daily antibiotic Immunology has prescribed me ongoing is coamoxiclav (aka augmentin) 625mg twice daily.

This link from the NHS approved Patient UK website confirms doxy & all tetracyclines should be avoided if you have lupus...maybe this is where you got your info:

patient.info/medicine/tetra...

For anyone reading this post who is curious, here is the most relevant excerpt from that link:

"If you have an inflammatory condition called systemic lupus erythematosus (also called lupus, or SLE), or if you have a condition causing muscle weakness, called myasthenia gravis. Tetracycline can make these conditions worse."

Hope your infection clears soon

Also, hope you'll let us know what your lupus nurse says

🍀🍀🍀🍀 coco

joannebond360 profile image
joannebond360

This is so interesting. Will ask the nurse when she rings. I have had my last infusion, I've had a course of 6 over two years so the next stage is to wait and see if it keeps me well. Don't think I could tolerate any more because of all the infections.

Thank you for all of your replies. Helped so much.

Jo

soootired profile image
soootired

I know this thread is old, but have been prescribed doxycycline for a lung infection and wondered what your outcome was.

I've finished a course of amoxycillin and they didn't work, so now been prescribed these.

Did you have any adverse effects?

Many thanks 😊

Carriecromy profile image
Carriecromy in reply tosoootired

How did you end up doing on the Doxycycline? Any lupus issues?

soootired profile image
soootired in reply toCarriecromy

They caused me to flare so I was switched to something else.

My GP apologised and I won't be given them again

joannebond360 profile image
joannebond360 in reply toCarriecromy

I was ok on them, actually on them again for a sinus infection 🙈

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