Hi, I have SLE and been prescribed tetracycline f... - LUPUS UK

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Hi, I have SLE and been prescribed tetracycline for bone infection. leaflet says don’t take if got SLE. Anyone know why? Thanks

Buttoneer profile image
23 Replies

SLE and tetracycline

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Buttoneer
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23 Replies
PMRpro profile image
PMRpro

There is some evidence that tetracycline can trigger SLE - -and it could make SLE worse with a hypersensitivity reaction

Buttoneer profile image
Buttoneer in reply to PMRpro

Ah, thank you. I think I will double check with the hospital on Monday, then, before taking it.

PMRpro profile image
PMRpro in reply to Buttoneer

You could ask a pharmacist - they should be able to help too.

Buttoneer profile image
Buttoneer in reply to PMRpro

Thank you for responding, just to let you know I’ve now been prescribed Doxycycline instead

happytulip profile image
happytulip in reply to Buttoneer

Doxycycline is also contraindicated in SLE(!!). If you have osteomyelitis why aren't they giving you metronidazole? Is this your GP or a specialist team??

PMRpro profile image
PMRpro in reply to Buttoneer

Which is ALSO a tetracycline antibiotic - same group.

saferx.co.nz/assets/Documen...

says

"Tetracyclines may increase symptoms of muscle weakness

if patients have myasthenia gravis, and they can exacerbate

systemic lupus erythematosus (SLE).

Pre-existing SLE is

a contraindication to therapy with minocycline1

which is

associated with a greater risk of lupus-erythematosus-like

syndrome than other tetracyclines.

If SLE occurs while

taking tetracyclines, discontinue treatment."

'strewth - if I (who do not have SLE) can find it in 3 minutes on google - what is that doctor playing at!

Barnclown profile image
Barnclown

Is your bone infection osteomyelitis?

Asking cause my bone infection was osteomyelitis and my consultants put me on long term, high dose, oral flucloxacillin ( daily for 5 months) which DID clear up that entrenched infection, so PHEW I avoided radical surgery...although, ever since, immunology constantly watches me closely in case it flares again...

I found Fluclox tabs HORRIBLE to taste & swallow + the fluclox daily dosing schedule was intensely inconvenient, so next time I’d ask for the solution form...but, ultimately, fluclox did work for me & didn’t seem to trigger a greater degree of severity in my lupus symptoms flaring than I was having already (but at that time 10 years ago, the bone infection had been simmering actives for several years and my lupus was inadequately medicated anyway 🤷🏼‍♀️)

Where is your bone infection?

And was it diagnosed via biopsy + imaging

Take care ❤️🍀❤️🍀 Coco

Buttoneer profile image
Buttoneer in reply to Barnclown

As far as I know, it’s not osteomyelitis. A biopsy showed it is strep. It came from an ulcer on my big toe which began at beginning of January and wouldn’t heal. X-ray showed infection got into bone and I had an emergency op last Monday to have as much as poss removed. I have severe drug allergies including penicillin, so am cautious about taking drugs, but it does limit what they can give me. Thank you for the info, I will contact the rheumatology team on Monday for advice

Barnclown profile image
Barnclown in reply to Buttoneer

No picnic! Thanks for explaining. I always feel very lucky i tolerate & respond pos to penicillin! If you can, I hope you’ll keep us posted

Barnclown profile image
Barnclown in reply to Buttoneer

PS my impression is that bone infections tend to be classed as osteomyelitis, usually with biopsy to clarify the bacteria, fungi etc involved

healthline.com/health/osteo...

happytulip profile image
happytulip in reply to Buttoneer

Infections in the bone are osteomyelitis, but obviously it depends what has been grown on the culture

Jmcb123 profile image
Jmcb123

Hi there, There have been some case reports linking tetracycline antibiotics to trigger lupus flares ..... having said that it is important that your bone infection is treated correctly and you and your doctor would have to weigh up the risks v benefits of treatment. Tetracycline does seem a strange choice of antibiotic for bone infection but I’m not doctor! 🤔

Buttoneer profile image
Buttoneer in reply to Jmcb123

Thanks for the info. I think they prescribed tetracycline because I’m allergic to penicillin, and have other severe drug allergies. I shall be contacting the rheumatology team on Monday for advice, I think.

Maddymay65 profile image
Maddymay65

Hi Buttoneer

I think tetracycline is a sun sensitive antibiotic which is why it is used with caution in people with lupus. I for example am uv sensitive so will not take it. I could be wrong but think this also puts it in the group of risking a flare, but obviously a doctors advice needs to be taken. I go by my rheumatologist /connective tissue nurse. Interestingly pre lupus this drug gave me a rash so give it a wide berth. Hope that helps M x

Buttoneer profile image
Buttoneer in reply to Maddymay65

Thank you, I do have to be careful in the sun, so that is useful to know. I shall contact the rheumatology team on Monday for advice. Thanks for your help

miccika1 profile image
miccika1

Tetracycline is not great for anyone unless there are no other options. Don't delay treating the infection but if there is another easier on the body antibiotic you should take it asap

Buttoneer profile image
Buttoneer in reply to miccika1

Thanks, I’m beginning to get the vibe this is not a nice antibiotic. I’m not going to risk taking it til I contact the rheumatology team on Monday ( pity there’s a weekend in the way). Maybe they can suggest an alternative, but I’m not hopeful because of my drug allergies. I’ll have to see what they say

miccika1 profile image
miccika1 in reply to Buttoneer

Any doc or pharmacist should be able to prescribe. Do you have some hospital there that could see you or urgent care to get a better antibiotic. Again, leaving infection is not good either. Im sure there are some medical services available 24/7, no?

happytulip profile image
happytulip in reply to miccika1

Delaying treatment of a bone infection is a big no-no. It's so difficult to shift once it takes hold.

Buttoneer profile image
Buttoneer in reply to miccika1

Hi, sorry for the delay in replying, . My GP and rheumatology team, said I had to contact the prescribing doctor. There are 24/7 medical services available, but only for emergencies. However, I eventually managed to get an emergency appointment, and after a consultation with microbiology I have now been prescribed Doxycycline instead, so fingers crossed they do the trick. Thank you for responding

Barnclown profile image
Barnclown in reply to Buttoneer

Although I can tolerate penicillins, I am hypersensitive + severely reactive to many other meds especially all types of analgesics...and to all food-types (have a crohns-like enteropathy + ‘failure of the small intestine’ + have hEDS-related chronic dysmotility) all of which means my consultants are extremely cautious re prescribing meds of all types. They tend to contact my univ. hospital’s Clinical Pharmacology team when confronting the sorta issue you’re facing now re the safest choice of antibiotic...So, when you drank to your consultants, might be worth asking if Clinical Pharmacology could be helpful?

Buttoneer profile image
Buttoneer in reply to Barnclown

Hi, sorry for delay in replying. You were right, it was osteomyelitis. I have to say that when I finally managed to get in contact with the right person, they were extremely helpful and arranged an emergency appointment for yesterday. After consultation with microbiology, I have now been prescribed with Doxycycline. I now have all fingers and toes crossed that it does the trick!

Barnclown profile image
Barnclown in reply to Buttoneer

THANKS: been thinking about you! AmV relieved your medics are being helpful. ’ve been on doxy once: it did the trick..but, as I recall, I felt pretty awful during the course...still, am glad I managed to stick it out. 🍀❤️🍀❤️

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