Well after being ill basically since mid October my consultant has agreed to prescribe long term antibiotics! He was concerned about side effects like hearing problems and heart problems both of which I already suffer from.. he has decided he is happy to monitor me and see how I go!
Hoping that I can finally break the winter cycle of illness and antibiotics!
What are you on? Clarithromycin? 250mg for long term? Gave me those side effects too.. Wishing you well xx
No azithromycin 250mg 3x week. Only taken 2 so far so no side effects yet but hoping they don't appear or he may change his mind!
That’s good.. it is the trend..other people have posted about it..I have azithromycin to use if I need to but they give me digestive problems, being on oral steroids has helped me so far, I hope it lasts..
Good luck Knicho x
Fran
I’ve been on the same dose of azithromycin since August without any side effects. Before that I was on doxycycline for about three years. That only reduced the number of infections I had. So far I have had one very minor infection. Good luck with the azithromycin.
Hi there Knicho and I've had no problems with 3xa week Az's- hopefully you'll be the same and it will keep most of the infections at bay. Wishing you well.
Have you tried [Edited] Might want to research about it....
I’ll have a look I’ve never heard of it?
Good luck with it all hoping it will help you. If you start getting side effects like bad head or dizziness stop taking them and go see the GP, they might be able to find something else. But lots of people manage to take them fine so fingers crossed.
I take Azithromycin 250 3 Times a weeks. I have done now for nearly a year. Although I had a break from them to a different antibiotic when I got sick. I am super well at present, I haven’t been this well in about 2 years, so I think the Azithromycin has helped. The down side is I have had quite bad stomach problems from them. I munch my way through tons of probiotics and prebiotics, which do help.
Both my consultants and my GP are keen that I continue with the Azithromycin. As my chest is so good at the moment I’m prepared to put up with the knarly stomach.
Good luck.
R
Good luck. I have taken Azithromycin 3 times a week for 5 years and find they have really helped keep the infections down. I get only mild digestive problems now as I always take them with food, but when first started instructions were to take 1 hour before or after food. I did request a break from them in the summer but only managed 3 months as my symptoms worsened.
Best wishes. x
I was given the option of either the antibiotics or a nebuliser. Delighted I had options I chose the nebuliser which has reduced the need for antibiotics to from every 3 weeks to no antibiotics since June until last week (when a mother of infections sneaked in!). So, for me, so far this works. Did you get this option?
No I didn’t I was told a nebuliser can be too wet and make infections worse?
I was told either could be as effective as the other and I got to choose. I didn’t want to take antibiotics if I could avoid them. The nebuliser needs keeping clean but has transformed my life (as the antibiotics will yours). The messages our consultants tell us are so different.... I’ll bring it up with mine when I see him. I use another clearance device too. I have gone from 18 months of continual infection to nearly 6 months without one. Good luck!
Well, my battle plan for this winter is to keep away from people with colds and flue etc and keep warm maybe wear something over my mouth when going out. I'm determined not to end up in hospital as I did twice last winter.
Good luck.
I’m also doing all those things.. keeping warm, covering my mouth when I go out, using first defence, taking multivitamins and Manuka honey! I’m really hoping to keep well now 🤞🤞
I wear gloves too when out, even when pushing the trolley in the supermarket. A lot of the bugs are on door handles x
Do be careful with honey, it's lovely stuff, but can contain bacteria, make sure your honey is medical grade Manuka, this is particularly important with Bronchiectasis and in those whose immune system is challenged. R xx
A flu jab & acupuncture have kept me reasonably free from infection & my long term antibiotics for utis acute 3 weekly can also have an effect if managed as it appears my weakest points get targeted if miss a dose .Weak heart pumping also in the background .Hope this may help.
Glad to hear it.. I’m hoping for the same x
Yes, I have heard Azithromycin can lead to tinnitus. I took it for over a year with no problems. But then my doc upped my Wellbutrin from 100mg to 300mg and I immediately came down with the loud buzzing in my ears. They said I lost 30% hearing in upper frequencies. So I stopped both the antibiotic and Wellbutrin. My hearing may have recovered just a little, but I now live with high-pitched buzz. At least it does not hurt in any way.
Thats not good I already have hearing problems and wear a hearing aid in one ear so we be monitoring closely and any sign of tinnitus I’ll stop immediately!
Hope it doesn’t impact on your life too much x
Update.. so far so good! I’ve had no problems yet, stomach is fine and touch wood I’m feeling fairly well.. usually by this time after stopping a round of antibiotics the symptoms are flaring up again so fingers crossed x
For me with associated conditions including breathing /cardio ... a flu jab & acupuncture assisted greatly & the prophylactic antibiotics [ penicillin based] needing rotation re sensitivity ! Mine were for utis acute 3 weekly & chronic sepsis /pyuria .Yet every time there are cutbacks those with no one specialist dept get targetted for cut off despite Red flags [ emergency action]& not fit for purpose online record dictats & omissions via Registrars questionable letters to block. NB below what it has come too! Even Confidentiality abused via Data Protection not happening for patient I think not .Oh by the way .Look into PHAGES as well as antibiotics used in Ukraine & Poland as involve the specific Chest bugs .There is also one unit at Cork University Eire but he can't get licensed .This is madness.
I have also been trying to get a sniffer dog for pyuria [ pus - boils -cysts- utis ]
The policies & procedures of NHS are not fit for purpose re disability & chronic multi often rare conditions & the diabetic, MS & COPD sufferers .It blames inadequate funding but also uses it to cause negligence towards patients & own personnel likewise every Charity too discriminating by franchising out .I was Mentally sectioned yesterday in A& E/Walkin clinic re chronic not acute sepsis as only want to know about what happened that day & only practitioners not medically qualified there after 5.00 ? Help! Wasn't it yet the NHS Nice uses Red Flag warnings that the practitioners, nurses technicians & administration ignore as " not medical" & Registrars not taking hippocratic oaths used to ignore Red Flags re: Chronic Sepsis In outpatients pretending Acute & entrapping by locking in an Acute Ward ?Then Detaining Order to wind up & feed back online as no Dr except Registrar seen using practitioner for 15min not returning deliberately as said would .My Grandmother eldest in ward in 1960s had same problem ?I escaped returned by Police wthout mobility scooter to be released by the Psychiatrist not addressing issues brought up in 2007 with Expert Witness a German girl recent 1st Kings College in Human rights & Community Dr .
As member of GP Panel in London went to the Link Meetings re CPOD don't have do have dysponea[ HF] & PAH re MI cardiac angioplasty .One other patient there [ Asian gentleman] no Charities re using Practitioners instead of Specialists directed by their Insurance & Remits /CONTRACTS even GPs now .I told them should only be done under direction of Speciaslist GMC qualified .However was not allowed to Feedback by Manager of 16 surgeries.So did an Art exhibition re BA Visual art re Burying Ones Head in the Sand & identity as one ages re System.Concept Impressionistic & abstracted photography .
IV antibiotics
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Antibiotics
