Hello, I’m new here my Name is nicola

[FrankiePugg]

I will have to start taking azithromycin 3 times a week as I have had 5 chest infections last year and twice ended up in hospital stay. The antibiotics did not work and had to have steroids. I would like to continue with my yoga classes at the gym without picking up infections. If anyone, is taking this medication, are you still able to go to the gym? I’m new here, still finding my way round. Thank you for reading my post. Awaiting to receive your advice,

[fionac66]

Hi ... you should still be able to go to the gym when on antibiotics.

[FrankiePugg in reply to fionac66]

Thank you for your reply. I am worried about picking infections, hope the azithromycin works. I am starting it today. How long does it take in kick in?

[fionac66 in reply to FrankiePugg]

The dose you are on is what they call a prophylactic dose - which means it helps prevent you picking up an infection. So should start working straight away. Good luck!

[FrankiePugg in reply to fionac66]

Thank you so much. Good to hear it works, as it’s been a difficult time for me. Do you take it to?

[FrankiePugg in reply to fionac66]

Would I be able to go to a wedding?

[fionac66]

Hi - my son’s used to take it. You should be able to go a wedding.

Which hospital do you go to?

[FrankiePugg in reply to fionac66]

At the university hospital coventry. They have not be able to find why this is happening and given me this medication as I have been in hospital stay twice this year and total of 5 chest infections in 2021 and 3 in 2020I start them on Monday now…hope, they do work as my life has changed. I have had the vaccine punemonia prevenar 13 as my antibodies were not working. I need to be tested in February to see, the antibodies work

Thank you your kind help 🙂🙏

[fionac66 in reply to FrankiePugg]

Hi again ... have they tested you for PCD? If not you can suggest it and get a referral to Leicester to get a test. You can then see a doctor who is a specialist in PCD.

[FrankiePugg]

Thank you. I certainly will do that and update you…🙂🙂

[mullsand]

That’s a prophylactic dose. Azithromycin is known to work very well at protecting you from respiratory infections. It’s tricky to check splenic function but certainly a discussion to have with your consultant and worth asking them to check your response to immunisations (bloods before a vaccine & again 4 weeks after to see how many antibodies you have built up) asplenia/polysplenia is fairly common with PCD do you know if you have a spleen?

[FrankiePugg in reply to mullsand]

My immunologist gave me the pneumoniccol vaccine prevenar 13 and I will be tested on the 9 of February to see, how the antibiotics are working. This is all new to me. I beginning to ask myself, will I have a normal life expectancy. So sorry to take up your time🙏

[mullsand]

Yes you can still go to gym weddings etc the prophylactic will help protect you from infection - my daughter is 18, asplenic & goes about life as normal including school etc exercise is important for both your lung & mental health

[FrankiePugg in reply to mullsand]

Thank you so much 🙏🙂I appreciate your time writing to me, giving me advice

[mullsand]

Ahh bless you it is frightening when it’s all so new yes your life expectancy is normal (phew :)) you may have more hospital admissions but it’s not life limiting, you’ll be taught how to do Chest physio (like a cystic fibrosis patient) to help keep your lungs clear. Do you have a number I can call you on?

[FrankiePugg in reply to mullsand]

If I put my number here, will everyone see it?

[mullsand]

Yes , are you on Facebook?

[FrankiePugg in reply to mullsand]

Yes🙂 Nicola Flor rose please send me friendship request

[mullsand]

Just sent

[TerryBun Administrator]

When you have your video consultation with the Royal Brompton Hospital, if they have any reason to suspect that you have PCD then they will arrange for you to have the relevant diagnostic tests.

Many people with various lung conditions, including those with PCD, take Azithromycin as a prophylactic antibiotic to help keep them well.

I hope your appointment goes well and you find out what is causing your lung issues.

[FrankiePugg in reply to TerryBun]

Thank you for your help 🙂

[Morrison10]

Hi, I was born in 1935 with PCD, inc Kartegener sydrome, wasn’t diagnosed until I was 32, when had bronchiectasis. Survived living during war, going to bed each night in cold damp air raid shelter because of nightly bombing, when 11 has pneumonia and pleurisy, spent 3 months in bed having kaolin poultices, no antibiotics then.Had first antibiotics when about 25, worked wonders. Since then was able to have fairly normal life, worked full time, had two daughters. Rode scooter and small motorbike for getting to hospital appointments, and in later year rode pillion on late husbands motorbikes. Have kept own antibiotics for many years, start taking them when feel necessary, and keep written record of dates taken, which one, and reason. Have deteriorated last twelve months, was due to have course of iv antibiotics at home, after being set up at QE hospital Birmingham. Good consultant there who understands PCD Dr Sullivan. Can’t drive after being set up so younger daughter was going to take me but had major breaks In leg and ankle few days before, so deferred the six months+ it will take to properly heel. She doesn’t have partner or children, nor does my older daughter who has advanced MS. Neither live close to me, and all my able bodied friends who could drive have died. Good luck to you, hope you can get issues solved soon. Jean.x

[FrankiePugg in reply to Morrison10]

Thank you for your message. You have been through so much. It definitely has given me encouragement. It’s not easy. I trust in god and pray, soon I will be diagnosed. I had Gillian-barre in 2009 and cancer of the thyroid in 2013. I feel let down by the respiratory chest consultant as last year, I had five chest infections and 2 hospital stays. Thank you god, hoping this will soon be resolved 🙏. Jean, my heart goes out to you. You are very brave…bless you. Hope, each day, god will makes us and our family’s stronger 🙏🌺🌺🌺