Doxycycline

[Biddy47]

I have been prescribed 2 wks. of doxycycline for a chest infection. I have cutaneous lupus (not SLE) and sjogren's syndrome. The leaflet says to tell your doctor if you have lupus and when I googled it, it only referred to SLE and doxycycline. Could anyone give me some advice on this. I should say that I had a course of doxycycline in February and can't say I had any problems. Thanks.

[whisperit]

Hello Biddy47

I couldn't find anything definitive on a google search either, but if you look at the list of "Related Posts" to the right of your post, you will see this question has been raised on this site before. There might be some useful info buried in there somewhere? eg healthunlocked.com/lupusuk/... x

[Biddy47 in reply to whisperit]

Thanks whispering, I'll have a look.

[happytulip]

Patients with SLE should not be prescribed trimethoprim or doxycycline as it can cause a flare. Saying that I'm not sure about cutaneous Lupus. Doxycycline is thr correct prescription for community acquired chest infection and if you've had it before then perhaps you will be ok. Is your GP surgery open this morning? Can you call them?

If it was me and I'd had it before without problems I would take it, but thats just me. Its about benefit vs cost and I'd say getting rid of that chest infection is a priority to get you feeling better.

Good luck.

[Chris21]

I’ve got SLE and sjogrens and have had doxycycline when I’ve had chest infections, it’s about the only one that will clear it completely, can’t say if it causes a flare as you normally feel absolutely rubbish anyway.

The pharmacist can help with your concerns if you can’t get hold of your gp. Hope you feel better soon.

[Biddy47]

Thanks everyone for your comments. I have decided to go ahead with the doxycycline. I normally have Amoxicillin on standby ( I have bronchiectasis as well) and the protocol is if you suspect an infection get a sputum sample to either GP or hospital where consultant is. I started an infection on Tues. 11th Dec. and promptly took sample to GP surgery, I also decided to give one to hospital, because from past experience things have gone wrong at surgery. I started Amoxicillin and called surgery 3 days later for results of test to determine which bug I had and true to form there were no results, sample had somehow gone missing! As I thought things were improving I decided to carry on with Amox. and wait for results from hospital. Letter, which was dictated on 13th, arrived yesterday with results, the Amox was wrong antibiotic and should be on Doxycycline. Bearing in mind this is all 10 days after starting infection I didn't want to waste anymore time. As luck would have it I had a supply of Doxy. at home. I have made an appointment with GP for 28th to get to the bottom of this, it's not the first time it has happened. Sorry for rambling on, but I'm furious as it means I've had 10 days taking and Antibiotic unnecessarily.

[EOLHPC in reply to Biddy47]

Good plan! Got my fingers crossed for you.!

It’s DREADFUL they lost that sample: GRRRRRRR

For what it’s worth & in case it’s useful:

I have brochiectasis too, and am following a similar emergency protocol prescribed by my immunology chief (as you know, i have a Primary Antibody Deficiency simulatenous with infant onset primary SLE & hEDS). My immunology chief has had me on therapeutic coamoxiclav (augmentin) daily for years, with emergency protocols for various types of breakthrough infections: at first he said to use doxy for breakthrough respiratory infections, but i hesitated & mentioned doxy is contraindicated for SLE patients - so he said ok take ciproflaxin instead (10-14 days minimum). Anyway, last march i had my first infection breakthrough (pneumonia.) so my GP & i wheeled into action & got me on cipro fast which beat the infection within 10 days: HURRAH! Meanwhile i continue all my SLE meds (hydroxy + pred + myco). went back on coamoxi after the last cipro dose and have been relatively ok ever since...

but tast autumn my immunology chief decided my chronic rhinosinusitis is at the root of that breakthrough infection, and referred me to his v distinguished immunology ENT consultant colleague in london. I saw him last week...he ran a CT scan the same day & wants me back asap in jan to see him & his surgeon colleague...all a bit spooky... the surgery will be endoscopic & he wants to add steroids + special rinses onto the therapeutic coamoxi. I feel v lucky to be in tertiary care, and am sure i’m in the best poss hands, but it’s all a bit EEEEK...so am relating to your post Big Time

Hope you’ll let us know how this goes, biddy. Wishing you & yours a merry, happy festive season!

XOXO Coco

[honeybug in reply to EOLHPC]

Hi Bc

I’m so very sorry about your upcoming surgery. I’ve just said a special prayer for you dear. Please let me know how you’re doing okay???

Take care dear and Merry Christmas and Happy New Year too. 😊🌸🌿🦋🙏🤗💗😘😇🕊🎄❄️☃️🎅🦌

[EOLHPC in reply to honeybug]

😍💐💐💐💐🎄🍀

[honeybug in reply to EOLHPC]

😊♥️🥰🙏😇🕊🎄🎅🦌❄️☃️

[EOLHPC in reply to honeybug]

💐 Thanks dear 🥰 HB...Yes am about as ok as we can be at our age with early onset immune dysfunction & connective tissue disorders 👍🤷🏼‍♀️😉🤣🤣🤣🤣 ...THANK GOODNESS for my dedicated, proactive tertiary multidiscipline medical team + this WONDERFUL forum & LUK: 🤷🏼‍♀️ without you, i’d definitely be A LOT less ok + have A LOT less hope for the future 🤞🤞🤞. Hope your bad flare is cooperating with management...and that you have a joyous peacful festive season 🍀❤️🍀❤️

[honeybug in reply to EOLHPC]

Thank you sweetie. I’m sorry you’ve had suffering your whole life. Loving gentle gentle hugs 🤗 sweetie.

I feel the same about you too. 🥰

Wishing you as painless a Christmas 🎄 and New Year celebration 🎉 as possible sweetie.

Bless you abundantly for sharing /caring your wealth of knowledge and experiences with everyone here.

You make such a great impact in so many lives and I thank you for this dear friend.

Take care and know I love you sweet friend.

EvaJo 🤗♥️🥰🙏😇🕊🎄❄️☃️🎅🦌

[EOLHPC in reply to honeybug]

👍👍👍👍Feeling the same about you dear HB...🥰

[honeybug in reply to EOLHPC]

xxx

[Biddy47 in reply to EOLHPC]

Thanks Barnclown, sorry you have to have surgery, I have had 3 surgeries on my sinuses and I use sinus rinses twice daily which helps enormously. My chest consultant has me on Azithromycin every other day as a prophylactic but I have a break from it now and again, at my request, because all these antibiotics give me big gastric problems.

Wishing you a merry Christmas, and of course a healthy one.

[EOLHPC in reply to Biddy47]

THANKS...glad to know the surgery has helped...yes, i’ve been sinus rinsing for many years...but this will be the first surgery: the Imm/ENT consultant said i should’ve had it YEARS ago...i figure i’m in good hands. Am guessing it’ll be endoscopic surgery - was yours?

Sorry about your azithro probs...l am avoiding it like the plague cause of my childhood onset AID-hEDS enteropathy/CIPO stuff...Immunology wants me to try it, but i know too many other hyperreactive Primary Immunodeficiency Disease patients like me whose GI track can’t tolerate azithro...but on the other hand i know others who rely on it daily long term like you...

[honeybug in reply to Biddy47]

🤗💗😘🙏😇🕊

[katidid]

Best advice - talk to the prescribing doc and your pharmacist (chemist?). If you didn’t have a reaction before I’m pretty sure you’ll be ok. But when it comes to antibiotics, def get the 411 from the doc

Hope you feel better soon!

[Biddy47 in reply to katidid]

Thanks Katidid. I've been on them for 4 days now and so far so good. I have an appointment with GP for Thursday.

Merry Christmas to you.