Controlling the Nasties : As I’ve had... - Lung Conditions C...

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Controlling the Nasties

Morrison10 profile image
38 Replies

As I’ve had such a bad year trying to get rid of pseudomonas etc, and on lots of antibiotics, my consultant decided that I should take 1 Azithromycin every day indefinitely (the usual dose is 2 a day). I’ve now been on this dose for 4 weeks, and pleased to say no flare ups, etc temperature just normal. I understand I’m to to stay on them indefinitely, although will discuss with her again when have opportunity.

I had to ask my GP surgery to put them onto my repeat script, but request was refused, and was given 2 months supply. The doctor seemed to think I wasn’t telling truth, so I will have to ask the very busy consultant to write to surgery and confirm. I’ve been with surgery nearly 65 years, don’t like how it now responds to patients. I will do updated post in due course. Regards, Jean x

ADDENDUM. Sorry didn’t draw attention to being born with PCD (see site on here). Cilia are little hair like structures that line our lungs etc, wave about and get rid of dust etc. Because my cilia dont wave about I’m more at risk, and have to avoid places that could make me ill, and affect my ability to recover. Also think being 87 years young has something to do with my battle, but hope have Mother’s strong genes, as she lived until 111.

38 Replies
Alberta56 profile image
Alberta56

Maddening isn't it when our surgeries don't believe us. I'm on 3 Aziths a week. They're very good if they suit you. xxx

Morrison10 profile image
Morrison10 in reply to Alberta56

Thanks, yes learnt from HU that some people take 3 Aziths a week, hope will be well enough to lower my dose in due course, but not holding my breath! I have usually had 14 day course, alternating with Septrin Forte and Ciproxin. x

helenlw7 profile image
helenlw7 in reply to Morrison10

I’m on 3 azithromycin a week, and I’ve only had one chest infection in the last 5+ years, as opposed to the usual 6-7.

Littlepom profile image
Littlepom

This insenses me! If they knew anything about azithromycin they would know that paients stay on it permanently until it ceases to help. So good, get your consultant to write to the GP. This refusal puts the GP into a very bad light with the consultant and makes them look stupid. Also email the practice manager, with attention to your GP also. Head it 'preliminary to complaint.'

Inform them that by this refusal they are failing in their duty of care towards you and implying that you are lying as to the instructions of your consultant. Tell them that after so many years it is disappointing that the service has sunk to such a low level. It's amazing how these communications concentrate their minds.

eleanordigby profile image
eleanordigby in reply to Littlepom

that’s such good advice, I’ve saved it to use myself when needed! I’ve had it suggested to me before (by the surgery pharmacist of all people) that “we can’t just take your word for it”. But they won’t shift themselves to contact the consultant to confirm, oh no. B***** cheek! This is the sort of thing I meant when I said to someone I’d like the cf label, without the illness. I’m afraid the man might’ve taken it the wrong way but honestly, so many obstacles are thrown in our way, and we’re ILL, we haven’t the energy to fight these obstructive people

Bevvy profile image
Bevvy

Pleased this new medicine regime is working so well for you. Sorry to contradict others here, I think to be fair to your gp, the consultant should have written to them. They should do this as a matter of course after every appointment, but especially when medication changed. The gp is just that - a general doctor and you are seeing a specialist who understands your condition far more than a Gp would. Am sure your gp doesn’t think you are not telling the truth but procedure wise, is correct for them to follow consultant guidelines. Therefore require a letter.

Unfortunately it is important that you check gp actually reads the letter. My gps often don’t and THAT infuriates me, when they have been given a clear directive from hospital and don’t do it!! My father (at a surgery in the north) is often telephoned by gp following a hospital letter, so I know at least in his case, letters are followed up.

Littlepom profile image
Littlepom in reply to Bevvy

as procedure goes, the consultant will have written to the GP and it has not been read. This happens all the time with letters from my consultant to my GP including the letter from her telling them that I should have te spring covid booster whic they kept refusing me. I insist on copies from consultants and so took mine and put it in front of them. If they weren't sure that Morrison was right in what she was telling them they could have checked. Sloppy sloppy sloppy

Bevvy profile image
Bevvy in reply to Littlepom

Yes as I said in my previous response I regularly have to chase gp to actually read letters from outside agencies such as hospital letters which I think is absolutely disgusting. I am thankful this poor practice doesn’t happen at my fathers surgery and they even contact him to discuss any letters received - which is how it should be for all gp practices.

However having re read Morrison10 post it suggests to me that they did speak to gp and no indication of a letter being sent/received., (maybe one was sent and they didn’t check but that’s not how I have read post) and that Morrison10 has to ask consultant no to send a letter……

Littlepom profile image
Littlepom in reply to Bevvy

I hope she gets it sorted. This sort of thing is an extra strain which none of us need

stones93 profile image
stones93 in reply to Littlepom

Sometimes the consultant's letter takes weeks if not months to arrive, something to do with outsourcing the typing of such letters?!

However I personally can understand the GP not wanting to prescribe this just on the patient's say-so; but, what the GP should do is to contact the relevant department and ask, not leave it up to the patient to do so. I had this problem with some new eye drops..(the consultant letter had yet to be received)... my GP said he could not prescribe them until he had talked to the eye hospital which he did and within 48 hours they were prescribed. To me that seemed the right way to do things.

eleanordigby profile image
eleanordigby in reply to Bevvy

sorry to keep butting in but my consultant does write but often not for two months or so, and the gp doesn’t seem to read it! Last time I was in hospital my husband dropped my discharge letter at the surgery himself, in bold type it asked the gp to do a further referral for a different health problem. Four months later I found no referral had been made! really makes me mad

Bevvy profile image
Bevvy in reply to eleanordigby

Some doctors just execute such poor practices it’s disgusting. I am currently having some issues with my gp practice and know how infuriating it can be. These days if I want to be certain gp has actually read a letter I “waste” an appointment and speak with gp or if med related speak to practice pharmacist. Otherwise am not convinced anything gets acted on!!

eleanordigby profile image
eleanordigby in reply to Bevvy

gp appointments are like hen’s teeth at my surgery, can’t get past receptionists for starters! they assume everyone is a time waster

Greenthorn profile image
Greenthorn

. Good to hear the Az antibiotic has put you on a steady keel. Thanks Jean for keeping us up to date and may you continue to stay on top of the bugs. ❤️ David.

eleanordigby profile image
eleanordigby

I was on azithromycin and it helped a lot for about five years but now they’ve found a nontuberculosis mycobacterium in my sputum I can’t have it, it causes resistance. So now I take doxycycline every day instead. But I hope you do well on it

Patk1 profile image
Patk1 in reply to eleanordigby

doxy is also antiinflammatory like azithromycin so hope it helps.i take with food to avoid side effects

Patk1 profile image
Patk1

I'm pleased yr better on thm & hope they help thro winter

garshe profile image
garshe

I took Azithromycin 3 times a week unfortunately didnt make any difference in fact seem to be getting more infections. I have now stopped and only take my emergency pack when required. I do take this for 2 weeks as advised by my Respiratory team as usually one week is not sufficient to clear infection fully. Good luck xxSheila 💕⚘

Eastend555 profile image
Eastend555

That very busy consultant has a secretary

Morrison10 profile image
Morrison10 in reply to Eastend555

yes, just as busy, but very good passing on messages etc. Jean x

Its got to the stage with my surgery that I take a copy of all my consultant's letters with me to appointments, or read the relevant one aloud with a phone consult adding the date it was sent. My surgery currently staffed mainly by locums, none of them stay long, there's no continuity of care at all. Scary.

Morrison10 profile image
Morrison10 in reply to

I haven’t been to my surgery for two years, too risky. See my Addendum to my initial posting please. Regards, Jean x

B0xermad profile image
B0xermad

hi Jean ,being on azithromycin is a good idea it has Ke my nasties at bay and I've been on it several years now 3 times a week 500mg a day .hope it does work for you.

Mooka profile image
Mooka

I’m pleased the Azithromycin is working well for you. My local hospital often takes an age to get their letters typed up and so your GP may not have received the letter yet. The hospital where I have most of my treatment has a patient portal so I get copies of my letters before the GP. I think in your case the easiest way around this would be to ask to be copied into the letters so that you can take a copy into the surgery when you have a point to make. I’ve had to do this to ensure they process sputum samples in the past. It may help you to phone your consultants secretary to ask for a copy of the letter. I hope you stay well.

PaulineHM profile image
PaulineHM

Hi Morrison, sorry for your difficulty in getting AZ. I haven’t gone through all the thread of replies, but if no one has suggested these routes then they will be worth a try.

1. Speak to the practice manager at the surgery about the delay in prescribing.

2. Speak to the consultant’s secretary at the hospital and explain. Ask them to speak with your GP.

Wishing you well.

Pauline

Morrison10 profile image
Morrison10 in reply to PaulineHM

Thanks. Since my surgery was forced into Group Practice, very difficult to speak to any practice manager. See also my Addendum to my initial posting.

PaulineHM profile image
PaulineHM in reply to Morrison10

I know it isn’t easy these days to easily speak to staff. If I was you I would write or type a note to the practice manager about your current situation viz. Azithromycin and drop it in to the surgery. I have done that a couple of times to help to highlight the circumstances you find yourself in.

Great genes by the way, they should serve you well.

Be well.

Pauline

Izb1 profile image
Izb1

So pleased to hear you have had 4 weeks with no flare ups Jean, that must be helping you to feel tons better. Get onto the consultants secretary for that letter and ask them to copy you in so you wont have this problem in the future x

Morrison10 profile image
Morrison10

thanks, yes do feel better. Have you seen Addendum I’ve made to my posting, sorry didn’t draw attention to my PCD, affects so much of my life. My consultant is lady who understands it, and as babies now born with it are not now dying, she is becoming very busy. I often speak to her secretary and get useful guidance. My surgery have been forced into Group Practice with 5 or 6 other surgeries, causing delays as all post has to go there first. When my consultant writes to surgery she sends me copy. Regards Jean x

poppyshola profile image
poppyshola

HI again .. I also suffered with Pseudomonas for a few years, Aspergillus around 3 times and Staph just once ... I also took Azithromycin for a while until my stomach just couldn't stomach it 🙃 and I'm not sure if Carbocystrine is the same type of drug as azithromycin but was put on that to help me after stopping azithromycin and it took a while but for over a year I've been free of any of the above mentioned bugs ... whether it's just Carbocisteine or the use of a Himalayan salt lamp next to my bed or a combination of both I really don't know but I'm amazed just how well something has sorted the little buggers out 😆

Reading4everyone profile image
Reading4everyone

So sorry you have this battle on your hands when you are poorly and such a great age. It is hard to keep patience when you know better than the Doctor. Diplomacy is key I have found in my trying moments and there have been many. It is policy I believe for the consultant to inform the GP any change in medication. Do you have a recent letter stating the change? If so gently but firmly put it before the GP. I have been fighting my corner since I was 21 when I self diagnosed Bronchiectasis. So tiring, frustrating and anger inducing. I am now 76 and am still put to the test periodically. Best wishes Marlbee.

Neville33 profile image
Neville33

azithtomyavin eill not get rid of pseudo.. it is not advised from Nayionsl Jewish to do this..thst is the main drug used to combat MAC..nebulized a Tobramyacin or Colistin every other month is what’s used, or IV drugs..I’d b Ed getting a second opinion

alcgb profile image
alcgb

Jean, do you take Azithromycin 250mg once daily or is it 500mg? I have been diagnosed with pseudomonas & am currently taking 750mg Ciprofloxacin, twice daily two week course). The infection is improving but my breathing is terrible on any exertion. I am hoping to avoid a hospital admission as I have already been in hospital once this year, in March with pneumonia & an abscess in one of my lungs. I really need to get on top of the almost permanent chest infections that I am suffering from.

Morrison10 profile image
Morrison10 in reply to alcgb

I take one per day of 250 Azithromycin. My sputum result showed pseudomonas had been cleared or reduced, following months of constant Ciproxin or Septrin Forte the only oral antibiotics that now work for me, and iv. course. I was diagnosed with bronchiectasis age 32, but Consultant thought may have had it for some years before because of repeated chest infections, which was reason by GP sent me to him. I was born. with PCD and had chest problems, pneumonia and pleurisy age 11 in 1946. Best wishes Jean x

in reply to alcgb

Just to clarify, and with the caveat that I’m not medically qualified, Azithromycin doesn’t treat pseudomonas. However, for a percentage of people, long term azithromycin use as a prophylactic can help reduce exacerbations. Most people using it this way will take 250mg three days a week, but a small minority do take it daily where it’s felt this is more appropriate. We still don’t know how it works as a prophylactic other than it doesn’t appear to be the bactericidal effect because it works regardless of the type of bacteria present: we know that it has an incidental anti-inflammatory effect, and the theory is that it’s this action makes the lungs less hospitable regardless of bacterial species. Unfortunately it doesn’t work for everyone, and if recurrent pseudomonas is actually the primary problem, then the first step would be to blast any active infection with appropriate antibiotics (either cipro or IVs) and then add in antipseudomonal nebs for day to day suppression if that hasn’t already been done. If it has, then adding in Zith might well be the appropriate step after that.

watergazer profile image
watergazer

Maddening when you have to get back to your consultant for your GP to believe you. Keep well xx

BionicLady profile image
BionicLady

I am so sorry to hear about your health and it is truly frustrating to say the least when you read such stories and really hope you manage to sort X

Karenanne61 profile image
Karenanne61

Boomin' gps! 😡 I'm on one azithromycin 3 times a week. All good so far so I hope it works for you.

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