any one else coping on high strength long term antibiotics? i'm in 6th week of flucloxacillin with up to 6 months likely...

[Barnclown]

i've been on flucloxacillin 500 mg every 5-6 hrs 4x daily for an infection in my upper jaw bone and sinus, of course complicated by my SLE. it would help me tough this out if i knew of someone else who has had to do something like this. i am feeling quite lonely. so would be very grateful to know how anyone else has coped or is coping with this sort of treatment

i guess i'm doing ok, but it is heavy going, especially cause these have to be taken 1 hr before food and 2 hours after food on an empty stomach. this is sorta tough for me cause for years i've been managing gastropareisis, which does best if i eat little and often and the right foods, or i get persistent nausea and have to go on oemprazole (nexium) & domperidone, which i try hard to avoid and have managed to stay off for several years now. anyway, so far the flucloxacillin taking is giving me nausea, which fades a bit when i do eat food on this schedule of eating and not eating i have to follow cause of these antibiotics. also, my BMs have loosened up a lot on this med, but i know this is nothing to worry about, just typical. i know i'm sorta lucky: there are lots of other side effects flucloxacillin can give.

i have always taken loads of probiotics (both as supplements and as live yogurt) and am still doing this. over the years i have had to take antibiotics regularly for various infections, but never for more than 2 weeks at a time

the only other oral med i take is plaquenil 200mg 2x daily on a full stomach which works great, and over the past year since my diagnosis this has really helped a lot to take the edge off my symptoms

but then this infection was diagnosed. my gp, rheumy, the specialist lupus nurse and the maxillo facial surgeon have all been great. now i am going to see an ENT specialist.

also, i am interested in whether anyone has noticed that they react differently to different manufacture's versions of flucloxacillin? i have been given boxes from 2 different manufacturers, and i feel as if one make gives more upper GI discomfort and nausea than the other make. this week i am going to ask my surgery dispensary if they can get hold of the make that seems easier on me....

hoping there is someone out there...

[Hidden]

i am on long term propholatic (preventative) antibotics for life now, i have had so many chest infections. angain have to take mine and hr before food and 2 hrs after. my azithroymcin makes me dizzy and gives me insomnia. my immunologist and rhuemy and gp are brilliant.

[Barnclown]

Thanks tatty

Sounds as if you have come to terms with this and got good support: helps me to know this. Am so used to the drs always telling us we should take antibiotics as little as poss etc. but I totally can understand why lupus might mean this doesn't apply. It's just that I know of others on steroids etc etc but you're the only one on long term antibiotics (prophylactic, apparently, is what might have prevented me ending up in quite the situation I am, with this long term infection)

It does make a huge diff to have good relationships with our GPs, rheumies etc. I also have a great specialist lupus nurse. I feel very lucky in a lot of ways

Anyway, heariing a bit about your experience has made a big difference for me, so I am very grateful

And I wish you all the very best of health possible

[Hidden in reply to Barnclown]

hi barn clown yeh ive had so many infections and a couple of pneumonias on high dose steroids and we keep having to stop my immunosurpressant when the infection get too bad. which means the sle flares up so this seemed the only way forward. the down side to propholatic antibiotics is i could get resistant to them. but i was hardly off them at all anyway. immunologist is brilliant. so you really dont want them propholaticly anyway if you can avoid it.

but it really does surprise me how many different specialist you can end up seeing cause of the lupus.

hope your jaw improves soon and you wont need surgery. i have has sle 12 years now. and begining to get use to the fact it throws curved balls from left feld when you least expect them.

have a good christmas

[Barnclown]

Hey tatty

You're so right: have spent a lifetime seeing all sorts of pecialists for different bits of bod. Somehow though, thought finally getting SLE diagnosis might mean I could cut down on numbers of specialists, but no: I seem to be adding even more types: that's your curve ball, isn't it?! Thanks for simply stating this is what it is, having lupus. I do get it, but my point of view is still sorta where it was for the 57 years pre SLE diagnosis: I'm normal, just a bit of a hypochondriac and this will all go away someday etc.

Well, today had my bloods tested again, monitoring kidney & liver function re flucloxacillin, and generally bones etc re plaquenil. How often do you get these test done? Am guessing you're in the uk using the NHS too

That is interesting re how you and your drs balance your various type of meds. This is really helpful info: sets me up to understand that it's worth asking about my balance when I see rheumy in April probably. Which immunosuppressant are you on? Have you actually become resistant to any antibiotics? Is your immunologist the main dr coordinating your treatment?

Anyway, if you do see this reply, hope you keep as well as poss

Happy christmass & new year

[Hidden]

hi barnclown,

my immunologist and rheumy and gp co ordinate things between them its been a real juggling act that has needed some negotiation at times but always had my best intersts at heart.

i have become resistant to penecillin and cephelaxins.

gp monitors my blood and he tells me when to get re tested but i suffer from low potassium?cause so we have to keep an eye on that and my suppliments so currently its every two weeks.

oh yeh in a vetern at the nhs and now have 6 consultants. rhuemy/ immunology is my main lead though and the others fit in round them.

my immunosurpressant is mycofenolate mofitil ive been on all the others with rubbish results.

it might be worth reducing you immunosurpressant temp to get rid of the infection we have had to do that when i have had pneumonia. but has to be blancance out with how bad your SLE

i had the hypercondriact thing before i was diagnosed.

dont be frightened to ring the hospital and ask to speak to the secateries of the consultant or even write to them if your concerned/ with your concerns. as long as your polite they are usually very helpful. also if you get booked for tests and havent recieved an appointment in a month of refferal chase it up. its learning to make the most out the nhs.

have to say currently have some really to drs looking afer me. also if you get seen by a registra and dont agree with them insist on seeing the consultant before you go home.

its hard to do sometimes especially if tired or vaunerable but your worth it.

but my gp is brilliant we do quite a lot by email/ telephone

merry christmas hope this helps.

[nadzerovzki in reply to Hidden]

Be careful of synthetic vitamin supplements, or rather, avoid them at all costs as they stress your liver and kidneys, don't supply the supplementation required and actually block your natural ability to absorb nutrients from food.

Much better is a "super-green" type vegetable-based supplement made from kale and other vegetables.

You should ALL look up "The Gerson Therapy" as it will help you understand the natural healing process and how it gets out of balance, it may even cure all of your symptoms for good. Happy researching and good luck!

-Yours truthfully, Adam.

[Barnclown]

You bet that helps, tatty! Big time! You're giving me the best Xmas present possible (oh, we'll: if someone would, say make me "all better" (ha) that would I guess top your advice etc.

Hope you won't mind if I keep in touch - eg by private message - no rush, please, but I do have another question: I'm getting given a series of different manufactureres' versions of flucloxacillin. One version tastes extra awful & makes me feel even worse than the other makes. Have you had this prob? (So, I asked the dispensary at my surgery if they can get hold of the better makes instead. She said they can't promise but will try....I didn't have to make a fuss: just told her I could be on fluclox for months: her eyes popped out and she suddenly seemed really interested and sympathetic...)

And merry Christmas to you too: hope you're feeling as well as poss