Primrose123

[primrose123]

I have asthma/ bronchiectasis, I had been on Symbicort 400, 2 puffs twice daily for quite a few years, I was also on Sabutomal , I have found that in the past year I have had bad coughing bouts+ breathlessness on quite a few occasions,I was referred to a consultant who diagnosed the bronchiectasis by a CT scan, 2 years ago,(I had asked GP for referral) the consultant just said that I had scarring on my lung) & on my 2nd visit to consultant was told GP will up my antibiotics, to Amoxicillin to14 day course as opposed to 7 day course, I was not given another appointment with consultant, I found Amoxicillin 500 did help, but this year I have been having flair ups every 4/6 weeks, GP changed me over to Clarithromycin which made me very nauseous, I had to go back on to Amoxicillin 500, then GP changed my inhaler to FostairNext100 2 puffs twice per day, ater 2 weeks on FostairNext I was covered in bruises & quite breathless,phoned surgeryto be told by GP to continue FostairNext and give it a chance, I went back on Symbicort as I have it on repeat prescription & I am also back on my rescue pack of steroids. & Amoxicillin.( The GP said that the bruising was because I am Older, but I got a fright as my whole foot was a mass of bruises& my hands & arms too, I have never eperienced anything like this before..I would greatly appreciate all help & advice as I am at a loss as to what to do...Many thanks..x

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[Hidden]

I think you did the right thing. If the new inhaler isn't working and your having a bad reaction you can't keep taking bit. The consultant should be telling you what's best not the GP in my opinion. I recently changed my anti histamine tablet and had a bad reaction, I spoke to the GP and changed it back right away. During the coughing bouts do you end up getting a chest infection? Also do you try to clear your chest morning and evening?

[primrose123 in reply to Hidden]

Thank you Gsp for your most helpful, kind reply, yes I do clear my chest morning & evening & to be honest I am on day 2 of prednisolne 8 per day for 5 days +3 per day of Amoxillan 500 for 14 days & I am still feeling quite breathless, I am just hoping that as the days go on I will start to feel much better, I also have a bad bout of sinusitis which I have not had before, GP gave me a nasal spray, which has not helped, I have been on it for 2 weeks, I do not want to be continuing calling surgery as I feel that due to lockdown they will be too busy, & perhaps feel that I am a being a nuisance asking for another change of medication,.I hope all good & well with you Gsp, & I wish you much happiness for the future.. Take care, stay safe...x

[Hidden in reply to primrose123]

youtu.be/CdPpV32cM0I(Not working as expected?)

This might help. I have his book and it's helped me. I also tape my mouth at night only nose breathing, I know it sounds weird but you breath deeper than mouth breathing. He has methods to unblock your nose.

Hope this helps Primrose.

[primrose123 in reply to Hidden]

Thank you,Gsp, video looks good, will give it a good try

..x

[Blackcat99 in reply to primrose123]

Video looks interesting, thank you - I'll try to get the book, as recently finding I wake up with horrible dryness in mouth. One thing I'm learning about bronchiectasis is that it affects far more bits of the body that you might expect. Sinusitis has plagued me for decades, have only recently realised its connection to Bronch and, over the past 2 or 3 years, have had increasing problems with ears becoming bunged up. Local nurses less willing to syringe as they say not really much wax there. During lockdown, ears were really getting me down, eventually found a hearing clinic where the audiologist was prepared to treat me using micro-suction. She asked for medical details and, when I mentioned Bronch, she looked enlightened and said "Ah!" Makes sense, I suppose, as all those systems are related to one another but, surprisingly perhaps, my own GP had never made that connection.

I'm still finding it hit or miss with inhalers and with antibiotics, but we are the ones who know what effect different meds have on our bodies, so please don't feel that you're being a nuisance. Local surgery say that they've actually been really quiet, with people trying not to bother them during crisis!

Look after yourself. x

[primrose123 in reply to Blackcat99]

Many thanks Blackcat99 for your most kind reply,, I am sorry that you have been suffering so much too, but however things seem to be improving much more for you now, & lets hope that you will be feeling much better soon!! i feel that with this illness that we have to be our own judge as regarding tratment & medication, as it all boils down to trial & error, that was an excellent video Gsp sent , I was much impressed & like you Blackcat99, I am going to lookout for the book!!! i will be contacting my GP surgery again today to try & arrande a telephone consultation, I will be asking that once this lockdown is. over if I could perhaps be referred to a bronchiectasis consultant..I. wish you good health,& much happiness for the future Blackcat99 ... Take care,& stay safe...x

[Blackcat99 in reply to Hidden]

I've found several of his videos online (including one relating to COVID 19) and they are quite impressive - his techniques all sound so 'ordinary' and straightforward, but actually have a really good effect. I'm really hoping they can help me dump the inhalers which have so many unpleasant side effects for me.

Can I ask which of his books you have? there seem to be a lot of them, and I'm confused!

By the way - primrose 123, how are you keeping now? Have you got your meds sorted, and did you get a referral to a Bronch specialist? I actually tried to self-refer to a research doctor down in Edinburgh (family were harassing me to do it!) but it all seems to still closed for the duration, unfortunately.

Best wishes to you both xx

[Hidden in reply to Blackcat99]

Oxygen advantage. I believe it's his latest one. He's been interviewed on some podcasts which I've found helpful.

[primrose123 in reply to Blackcat99]

Thank you Blackcat99 for asking how I am now,& yes, I have now had a referral to a Specialist & also a physiotherapist, I have so far had a change of inhaler & had blood tests,& I am also on a device to help to bring up phlegm,I am certainly feeling so much better now but it is still early days yet Blackcat99, as I have still to have more tests...I hope all goes well for you too Blackcat, & I send you my very best wishes too..Take care & stay safe..Primrose123..x

[Blackcat99 in reply to primrose123]

Thank you! It’s a real minefield of conflicting advice, conflicting meds, and ‘consultants’ who don’t actually know an awful lot about it - at least, that’s been my experience. The two things which have been best for me are 1) Pulmomary rehab classes and subsequent sessions with specially-trained keep fit instructors and 2) just getting a grip on myself and taking control of my situation (instead of bemoaning my fate!😉) From this and related forums, I think a lot of others have had similar experiences?

Will definitely try this breathing technique 🤞

Take care and keep in touch xx

[primrose123 in reply to Blackcat99]

Thank you Blackcat99, I find trying to stay positive as much as possible helps tremendously, I recently read the book, The amazing results of Positive Thinking,& I have to say that having read that book tends to change your whole mode of thinking & helps one to relax more & in my humble opinion can be an asset in helping to cope with some illnesses...Hope all goes well for you too Blackcat99...Do take care...x

[Hidden in reply to Blackcat99]

My appointment with the consultant was put back. In fact the consultant didn't contact me as he was on the front line of covid at the time. His senior who is a professor contacted me. I hope it's not put back again, be good to get some tests done.

All the best.

[primrose123 in reply to Hidden]

You are on the right track, like myself Gsp, I find that even small things like a change of inhaler has helped me tremendously so far, but hopefully once all our tests are completed we will be given the correct medication & advice by the top professionals..x

[primrose123 in reply to primrose123]

@t

[Blackcat99 in reply to Hidden]

Good luck! 🤞

[primrose123 in reply to Hidden]

Hi Gsp, I had consultation with consultant yesterday, changed all my medication, I will no longer be prescribed antibiotics as apparently with the type of asthma I have antibiotics are of no help, I got all the tests & will be seeing consultant in January again..I was delighted as all went very well..Hope all good with you ..Primrose123..x

[Hidden in reply to primrose123]

I'm glad your appointment went well. How have you been doing during lock down 2.0?

[primrose123 in reply to Hidden]

I had quite a bad flair-up 2 weeks ago Gsp & after taking rescue pack did not help too much so I was praying that my consultation face-to-face with consultant would go ahead, delighted that it did, I feel so much better now..I hope that your appointment goes well in January too as getting the correct advice & medication is certainly a massive step forward...x

[primrose123 in reply to Hidden]

Hi Gsp, now had my lung function test, all test results go to Consultant, who I will see & receive results in January..Primrose123 x😌🎉🎅

[primrose123 in reply to Hidden]

Hello Gsp, how are you doing? I hope all good & well with you..I often think of you & hope that the treatment prescribed by your new consultant is now working well for you & that you are much better now..Kind regards, Gsp & take care. Primrose123..x

[primrose123 in reply to Hidden]

Hello Gsp, I sincerely hope all is well with you, I have been thinking about you often & hope that you are keeping much better now.. Kind regards,Primrose123..x

[primrose123 in reply to Hidden]

Thank you Gsp, Hope all good & well with you..x

[Hidden in reply to primrose123]

I'm ok thanks. Been back at work for a month now. Seem to get bad at the weekends. Thinking positive is a big thing, being determined has worked for me.

[primrose123 in reply to Hidden]

Delighted that you are back at work & are feeling. so much better Gsp,positivity is certainly half our battle,I do find that whenever I am at home, I try as much as possible to do breathing excersises, even if I am reading or watching the news, it is very true Gsp that whatever we do 30 times becomes a habit,(that is an old saying) The breathing technique that you advised has been most beneficial to me too, so thank you so much once again Gsp..Do take care,& look after yourself well.. Primrose123 x

[Hidden in reply to primrose123]

How have you been Primrose and Blackcat?

[primrose123 in reply to Hidden]

Hello Gsp, nice to hear from you,& I hope all good & well with you... I am due back to see consultant & physiotherapist on Monday 12th Oct, so far I have had my inhaler changed to seretide which I found ok for the 1st month then I had a very sore throat & I was also hoarse, I also had blood tests taken & a nurse phoned me to say that there was a slight problem with my immune system, I also found that on week 4 on seretide I was feeling quite breathless so I started my rescue pack of steroids +amoxicillin( 14 day course) I also decided to go back on symbicort, I cut down to 3 puffs daily as opposed to 4 & I find that my cough has eased a lot,Iam beginning to think that it is the anti biotics that needs to be changed as I seem to require my rescue pack every 6-8 weeks, I have also sent 4 sputum samples to be tested, so perhaps that will define the correct antibiotic...I was given the Aero Bika device which I found did make a difference & also the breathing techniques which you had advised Gsp made a remarkable difference too.. I am just hoping that my appointment is not cancelled due to the pandemic, & after much careful thought & research I will be asking for a change of Antibiotic & not inhaler...Thank you again Gsp for keeping in touch, & I will keep you posted as to how I get on next week..Take care, stay safe..Primrose123 x

[Hidden in reply to primrose123]

I saw a new consultant yesterday. So much better than the last one. She's changed my inhalers and I've got CT scan, bloods all booked. Just hope the new inhalers work, as I've been really bad.

All the best Primrose123

[primrose123 in reply to Hidden]

Hi Gsp, so sorry to hear that you have not been well, I sincerely hope that your new inhalers work well for you, & I am delighted that you have now got a really good consultant. you know Gsp I personally feel that having a consultant who is knowledgeable,caring & dedicated is most definitely is half our battle, & also having the illness that we have it is all about trial & error, so if a new inhaler does not help, we just have to keep trying other ones until we find which one is right for us, it will help a lot once you have the CT scan & blood tests, the results will enable the consultant to prescribe what is best for you, so try not to worry to much Gsp as it is certainly a good step forward, & you are now most definitely on the right track, the new inhaler may well be the right one for you, the new consultant certainly seems to know what she is doing, & finding the right person with this illness is a massive bonus for us..I am sure all will turn out well for you this time Gsp, so meantime try to stay positive & just tell yourself 'I am having the best care now"& all will be turn out much better than you think..Take care,stay safe..Primrose123.x

[primrose123 in reply to Hidden]

Please do keep me posted on your progress Gsp, you are in my thoughts& prayers & hopefully you will be feeling much better soon..Take care, & God bless you always..Primrose123. x

[primrose123 in reply to Hidden]

Hi Gsp, I hope that all is good with you,& that you are keeping well too I sent you a private message, but possibly you did not receive it as my phone has been playing up quite a bit recently, I think that I will have to be renewing it soon..First of all I wish you a Safe, Healthy & Happy 2021, & lets hope it proves to be a much better year for all of us.. I have been very busy lately as I volunteered to help out at local foodbanks & help deliver boxes to people in need, I have to add I found it to be indeed very rewarding...I see my Consultant next week, & I must say that the treatment I was on has certainly worked exceptionally well in every way,I have not felt as well as what I do now,& maybe I will not require any more treatment..Take care & stay safe Gsp..Primrose123 x

[NorthernGirl3]

Steroids do mean that you bruise easily. Are you taking calcium and Vitamin D? They help protect your bones which steroids also have an impact upon. In my experience even lung specialists aren’t very knowledgeable about Bronchiectasis. Amoxicillin has no effect upon my infections whatsoever yet they still insist this is what is in my rescue medication. I always end up taking ciprofoxacin.

[primrose123 in reply to NorthernGirl3]

Thank you NorthernGirl3 for your kind text message, & yes, I am now taking Vitamin D & calcium which I find has certainly made a vast difference, I am feeling much better now, & since seeing my new consultant I no longer take Amoxicillin which I believe has helped greatly in my progress, I guess it is all down to trial & error..Regarding Bronchiectasis & lung Specialists I feel that like everything else you get good, bad & indifferent in every walk of life, but I must add there are certainly some extremely caring, knowledgeable Bronchiectasis, Lung Consultants around, as many patients today have had their illness turned around, & it is Thanks to the knowledge & wonderful skills of our Consultants, finding the right one, like everything else is the key to success..I wish you a very Safe, Healthy & Happy 2021 Northern Girl3 & lets hope it is a much better year for all of us...Take care, Primrose123..x

[NorthernGirl3 in reply to primrose123]

Where have you found these knowledgeable experts? I did attempt to change my specialist after she failed to diagnose bronchiectasis for over two to years. GP said the only way was for him to re-refer me with no guarantee of who’d I get.

[primrose123 in reply to NorthernGirl3]

I would suggest perhaps if you ask your GP to refer you to a Bronchiectasis Specialist, you will probably get the answers that you are looking for,as some Lung consultants may not be quite as up to date with bronchiectasis,although in saying that we can't place all professional's in the same category, as I said before NorthernGirl3, whatever profession we care to look at, you get good, bad & indifferent in every profession..I sincerely hope that 2021 is a much better year for you Healthwise, & that all works out well for you..Take care, stay safe..Primrose123.. x

[primrose123 in reply to NorthernGirl3]

(PS.) You could also check out Bronchiectasis Specialist's in your surrounding area or hospital's near you, & call them to arrange an appointment..