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please help x

Posted , 9 users are following.

sabrina88
sabrina88

Hi everyone,

I had written so much but this site insists on pop ups that don't let you click off ! So I've lost the lot sad

Basically after months of struggling and bad experiences with GP's who have no knowledge or understanding of this condition I have been prescribed x3 azithromycin per week. Does anyone else take this medication and how do you find it?

I have been on 3 different types of anti biotics for a reoccurring chest infection for the last 5 weeks. I'm fine when I'm on them but within 48 hours of finishing them I'm bad again. I'm hoping that starting this treatment will help , but I'm feeling really stressed and down about it all. I'm 27 and have a 4 year old little boy. I try and stay focused on my husband and son but it's so hard when I feel so poorly all the time!

Sorry for the moan!

Would love to hear back from you all , Sabrina x

1 like, 23 replies

23 Replies

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  • 4jean
    4jean sabrina88

    Posted

    Hi Sabrina, sorry to hear you are feeling so down. I started Azithromycin a few years ago & it has been amazing for me. I occasionally still get an infection but when I do I have a course of different antibiotics to treat it. In the meantime though the Azithromycin controls the bronchiectasis & I only have a very small amount of mucus & most of the time no cough. It has really worked for me so I really hope it will do the same for you. Healthy diet & exercise also helps.   Good luck & let us know how you get on. 😊 Jean
  • broadsword
    broadsword sabrina88

    Posted

    I shall endorse what 4jean says. I saw an eminent B. physician at the Brompton who had a published paper on B and using Az. Unlike other drugs in its group it has an anti inflammatory effect which is its secret beyond any antibiotic properties. I take it to overcome infections but originally I used it in a large dosage to rid me of the cough and mucous. It works for me when it al, returns after a cold but strangely it feels as though it is not working and the best results are when I cease. I guess it has done its job. So I take it for rescue purposes but I know others take it regularly. It has been the secret of my success but it is not a cure but it is a saviour, at least for me
  • Operalyn
    Operalyn sabrina88

    Posted

    Oh Sabrina I am sorry you are feeling low - that can be part of the condition.  I have had bronchiectasis for 66 years and I can confirm that the treatment these days is better than in the olden days!

    Sometimes you get a chest infection that is really hard to shift.  Certain bugs are particularly hard to get rid of.  I can't take azythromycin three times a week because I have a tricky allergic reaction to them on a long term basis but lots of patients do and they do really well on it.  I take it for infections nonetheless and it is very effective on a short term basis too.

    You sort of get used to living with a sort of low-grade feeling poorly - my specialist said it is a bit like having a low-grade flu bug for most of the time.  I hope you have been taught how to move the mucus off your chest properly either with a device or the old-fashioned postural drainage way.  The key to bronchiectasis control is to get rid of the muck that makes you feel so awful in the first place.

    Do keep posting.  People will help if they can!

  • jeannie4243
    jeannie4243 sabrina88

    Posted

    I think Sbrina first of all you need to tell your G.P. you want to see a consultant, it must be so hard with a young child.  But i am afrid to say my husbnd is the same as you finish antibiotics two days later infection. Saying all that the last 3 months have been better no hospita stays (touch wood). And he went 2 wees with out an infection but got one on Sunday and bein treated at home. ut for a long time we just did infection psudsmona around and around for a year. but it is all about getting the right help and telling them what you want,but you have to stand your ground.  Saing that we have fantstic G.P. consultant, and resportory nurse,and every one in the hospital were brilliant. But i did have to stand my ground one day and say to a doctor no this is what i think needs to happen. And to o that you need to know as much about the illness as possible and about you how i effects you and how you feel.  Good Luck
  • mo_69
    mo_69 sabrina88

    Posted

    Hi Sabrina I take Az. 3 times a week was dubious at first but definitely an improvement for myself anyway. How long is the course of tablets you are taking?? My doctor used to give me a prescription for 7 days when I got to hospital care they told me I needed at least 11 and maybe 24 days antibiotics Anything less was useless. I also learnt physio to get rid of the mucus and although I don't have a lot it helps. I also take Carbosisteine to help thin the mucus and this has definitely helped too. Good luck.
  • sabrina88
    sabrina88

    Posted

    Hi everyone,

    Thank you so much for replies!

    I am also on montelukast tablets every day, x2 puffs of ciclesonide inhaler per day and x4 puffs of serotide 250mg per day....

    I have been asked to take azithromycin for 6 months, x3 per week, as I have had 7 infections this year. I don't have much mucus , it's the constant tight chest and tiredness that really gets me down the most. My consultant sent me for another CT scan which I had Friday and await the results , and also wants to insert a camera in to my lung to see what's going on ?!? That scares me as she said they want to see if I've developed cystic fibrosis !!?

    All your support is so much appreciated thank you so much xx

    • cynthia61971
      cynthia61971 sabrina88

      Posted

      Hi Sabrina...I am Cynthia from Texas....I feel your pain..in May I had so much tightness in my Chest that I called the EMS..I thought that I might be having a heart attack..I am also tired all the time because I wheeze so much at night I don't sleep well...I also was told by the EMS not to use the Puffers except in emergency...that I need to do the liquid vials that I use in my Nebulizer Machine...I als had a CT Scan a couple of weeks ago...I find out the results on Wednesday...I am afraid because I know that I am worse...at this point I wonder about Cystic Fibrosis also..I hope the best for you...This stuff is scary....
  • david02028
    david02028 sabrina88

    Posted

    I was told i may have to take the pill you mentioned perminatly have taken two weeks of ampicillin500mg but no better
    • sabrina88
      sabrina88 david02028

      Posted

      Hi David,

      I have had Amox before , and it is not a strong enough anti biotics for our condition. I understand that doctors say it's the first one to try when someone has an infection and this may well be the case..... For someone who does not have Broncheiactisis! I have seen several discussions on here stating that it's not strong enough. I've learnt that GP's have little knowledge of broncheiactisis. If you feel no better please please go back and ask for a stronger anti biotic. You could always give a sample as well, and then they can determine which bug it is. Keep us updated :-)

  • sabrina88
    sabrina88

    Posted

    Morning everyone,

    So I finished my course of anti biotics to treat and infection 2 days ago, and guess what? My tight chest is back! I have taken 2 Azithromycin so far and no improvement ....

    I'm not usuall a worrier , but I can't help but wonder why my lungs aren't good when I'm off the anti biotics??

    I'm also curious as it's not like I'm taking nothing... I guess my CT scan may show more but I'm royally fed up this morning and full of worry. Is it normal to worry like this all time? I hope one day I just wake up and think I need to get on with it !

    Best wishes to all.

    Ps - do you remember a David in the group don't remember full name ? He was really struggling for ages and everyone gave fab support I loved reading the discussions and offering my experiences of B. Can't seem to find him on here now.

    • Operalyn
      Operalyn sabrina88

      Posted

      Sabrina do you have steroid puffer - I.e. Seretide? Do you have Ventolin (blue) puffer? They can help especially in warm humid weather. Worry makes your chest tight and your breathing shallow too. Slow steady gentle breathing through your nose can be helpful. If you start to panic or tighten up while you are doing slow breathing stop for a minute then try again. It will calm you a bit and help your chest too.

      I wish I could hold your hand. I have had a long long time with this complaint and shed many tears but you can live with it. I had a rotten evening yesterday - couldn't breathe properly and was full of difficult to move sputum. However this morning I'm ok. Onward and upward!

    • sabrina88
      sabrina88 Operalyn

      Posted

      Hey!

      Thank you so much for your kind words. I have updated on the discussion - what do you make of it all?

      I feel really upset tonight - don't know where or what to do?? Could it be that this infection is just hard to shift ? But 5 months of a chest infection is that normal? sad

      Any advise would be much appreciated xx

  • sam90709
    sam90709 sabrina88

    Posted

    Hi Sabrina, it sounds like your meditation is on the right track. Personally i can't take Az ... despite what they allege on the packet about 10% of people don't tolerate it well. Unfortunately I'm one of them. I say unfortunate because my mother takes it and it's revolutionised her life!

    Montelukast can work very well to help with asthma type symptoms. If it's working then great. Works for me!

    Looking at your medications makes me wonder if you have asthma as well? In any case, it looks like a good start.

    If you are still getting infections, I wonder if you're getting the right antibiotics. That tendency to get reinfected quickly sounds like me. As does your little fellow. I wonder, has he just started with nursery / school?

    The reason I ask is that there are some people (like me) who just can't deal with some particular sorts of gems called gram negative bacteria. Such people can't do what everyone else can which is to learn - in the first few years of life - how to deal with them. Pretty much everyone can deal with gram positive, but gram negative you learn about - especially when you meet lots of new people at school or nursery.

    So right now your son is probably going through this. Which also means he's bringing them home. (I have 4 of ages 10 through 2, which helps explain my 8 years of chest infections and 4 years of diagnosed Bx!)

    So if your recent infections have been haemophilus influenza or Moraxella catarhalis I suspect that that could be what is happening. So then my next question is, what antibis were  you having? And did the doctor test your sputum first? Plain penicillin or amoxicillin? Problem there is that 90% of m catarhalis is resistant to penicillin so other bugs can "borrow" the resistance. And then when you stop the pills you will get reinfected immediately.

    The good news is that Az is very good against this sort of bug, so I would be very hopeful for you!

    Good luck, stay well

    S

    • sabrina88
      sabrina88 sam90709

      Posted

      Hi ,

      Thank you so much for your comment.

      I have had the letter to say that my samples grew moraxella catarrhalis and haemophilis influenzae.

      I have been given 10 days of doxycycline and they made me feel better , but once I stopped taking them. Back tonight chest etc.

      they then started me on levofloxacin but they made me have very bad deep thoughts !!!! It was crazy! So today I've gone back and been given more doxycycline! I have also been told once I've finished these and I'm back from holiday I'll need to go and have 10 of IV anti bs ...... Which scares me. What if they can't ever get rid of this sad

      Also, had my CT scan - they've been treating me for bronchieactisis for 5 months and my CT scan showed that I don't have it? So now I'm even more worried it's something else. Not felt this ill in all my life sad

      Look forward to hearing back with any advise xx

      Best wishes

    • sabrina88
      sabrina88 sam90709

      Posted

      Oh I've also been given ciprofloxcin today as well to try before going back to doxycycline... Have you ever had them?
    • sam90709
      sam90709 sabrina88

      Posted

      Yup. Had the bugs ... They are both on my frequent flyer list (!). For the drugs, not had cipro  but have had many times it's relative moxifloxicin. Generally works very well... But be warned, as with all drugs they can have side effects. In my case I get the tendonitis and the photosensitivity. Be prepared to use lots of factor 50. Moxifloxicin generally works very well for me. One thing I would say is that moxi is known to have less resistance than cipro.

      Doxycycline is my prophylactic antibiotic. Tolerate it well, although unfortunately also gives photosensitivity

      As for the CT scan... Well, firstly there are an awful lot of respiratory conditions that present with frequent infections and productive cough that do NOT require you to worry that there's something worse going on. Just like Bx it's a matter of managing them.

      Secondly of the several HRCT scans I have had, I've both had obvious tramline Bx and also one where the consultant said merely that "a few bronchi in the lower lungs caught one's eye".

      Doesn't change the fact that the only diagnosis that makes any sense is Bx. 

      Thing is, it takes quite a while before they and you can find the right treatment schedule. Which drugs are useful, which you need to or simply can cut out, what emergency antibis to take, who your frequent flyers are etc. For instance, moraxella is almost universally resistant to penicillin / amoxicillin, so that's off my list. But it takes a while to sort this sort of thing out.

      The IV antibis could be a really good idea for you. It's an aggressive treatment but the idea is that it clears out  all the bugs for sure. Resets the clock as it were. Then you can go  back to normal for a while. 

      The idea for it is that getting antibis into our lungs, through the lung wall and all the mucus and everything is really difficult. Hence heavy duty IV.

      There is a disadvantage. Some places like you to go into hospital for it. Which is a nightmare ... Apart from anything else you're surrounded by a lot of very sick people! There is an alternative. A lot of NHS trusts have a specialist cystic fibrosis team who go out to seE CF patients at home and will also help manage IV antibis for Bx patients at home. After all in lung terms, there's not a lot of difference. Push hard with your GP to sort that out if need be. That way you can have a fairly normal life as well while taking the IV antibis.

      Stay well and don't worry!

      S

    • sabrina88
      sabrina88 sam90709

      Posted

      Hi again!

      Thank you your detailed reply!

      So it's normal for it to take months for this type of bug to still be so 'active' so to speak? It seems to be a hard one to shift for sure.

      I'm really hoping the IV anti bs sort it out- i would like a few quality weeks break from this constant I'll feeling.

      I have enquired about the service to have the IV done at home , they are going to sort this out for me but they require me to go in for one day to be monitored so I don't have any allergic reactions to the anti bs..... I dread to think what the side effects may be like - but it will be worth it to feel better .

      I wonder if all of this is due to this fact that we haven't been able to totally clear up the infection, a specialist told me that if a bug is not killed properly is just lies dormant and creeps back again.... But for 5 months, with the amount of medication I've taken I just thought it would have cleared ?? Hmmm.

      About Bx, when th diagnosed me, I had a big question mark in my mind. I only have sputum when I have an infection - other than that I don't have it at all... Which is why I questioned the diagnosis. In some ways though I'd hoped that the scan has shown something as at least I'd be treated. hope that makes sense?

      Any tips on how to help a tight chest feel better ?

      Xx

    • jeannie4243
      jeannie4243 sam90709

      Posted

      Hi Sam well i read your reply to Sabrina with interest. I new none of what you told her, what is Gram negative bacteria. My poor husband Joe suffers with B along with alot of other illness such as R A and really gets down he does try to stay posative but it is one infection after another. He will finish antibiotics and 2 days later another one is back.  we have gone 6 weeks on Dyoxcyline, now we are on Cyprofloxin which is normally Psudamona and that always is a nasty one to clear. We have all different things but nothing seems to do much any ideas please
    • sam90709
      sam90709 sabrina88

      Posted

      Oh you can definitely have Bx without the sputum production between exacerbation. So yes, understand your thought, but it doesn't alter the diagnosis I'm afraid.

      Tight chest? With  the montelukast and the seretide etc I'm surprised. However, I find that my chest always feels easier if I manage to clear it really well. I know you're usually fairly dry but what sort of production do you have at the moment? Just wondering if the tightness is related to being a bit gummed up in there.

      I'm often very dry and tight in the morning. I have to get properly rehydrated before it'll shift. And it can take some wiggling about / different positions etc. Maybe try it in the shower? The humidity can help.

      Hope that helps!

      Good luck, stay well, clear lungs

      S

       

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