Advice greatly appreciated.

[janet1944]

Nothing works anymore.

My symbicort, and Spiriva. 2. Ventolin don't work anymore.

I use oxygen, I see my oxygen nurse every six months, that is the only input into my Emphysema. I send for a repeat prescription monthly.

I was diagnosed type2 diabetes 18 months ago, was given Metformin and that was it.

I no longer socialise, it's an impossibility to venture out.

Has anyone had any new amazing inhalers that work, I would be very grateful for any advice .

[Melissa87]

My dad was using spiriva but because he couldn't inhale tidy he wasn't having the complete dose. They give him actrivent (unsure of spelling) but it's a liquid equivalent and goes in to a nebuliser. He also had salbutamol via nebu i found this helped him more but he needed it 4 x a day rather than 2 x spiriva.

I understand everyone is different but it might be something to run past your respitory nurse.

Good luck!

[janet1944 in reply to Melissa87]

Thank you Melissa, I haven't got a Respiratory Nurse. As I said I see my oxygen nurse every six months to check my Sats. I don't use a nebuliser, but you have given me food for thought, I will get in touch with my oxygen nurse and see if I can talk things over and get sorted, I have been like this for about 5 years, I really should push it more. Thanks again will post again with Any news.

[cosykitty in reply to janet1944]

Hi janet1944, I'm making an assumption here that the oxygen nurse you speak of is probably a Respiratory Nurse. If that's not the case, then I would be speaking to either your GP, or Oxygen Nurse ASAP to further discuss your condition. If you feel that your current regime of meds and inhalers are not working or effective anymore you must speak up.

You should be getting more support!! Insist on it. You shouldn't be left feeling so isolated. If you no longer venture out or socialise you're bound to feel down and you need to let someone medical know. Don't waste another moment, you deserve to have a good quality of life.

You may need some nebulisers if you're not getting any relief from your current inhalers. Sounds to me you have reached a crossroads in your treatment, so you cannot possibly wait till the 6 monthly check up, unless of course it's coming up soon? Unless you tell someone, they will assume you're ok.

Sadly you have to be very proactive as a patient with lung disease. Otherwise you will find you'll be left to manage alone for the most part. Whenever anything changes in your condition it's really important to get help.

So yes, PUSH IT

Wishing you well, let us know how you get on...

[janet1944 in reply to cosykitty]

Thank you cosy kitty, I am getting some good advice ,I really must push myself forward more, and yes I will get in touch with my oxygen nurse. And Doctor. My problem is even getting ready and keeping an appointment is like climbing a mountain. My problem I never complain. But I will.

Thank you again I will keep in touch, best wishes.

[fcag2001]

What about a nebuliser using salbutamol -,works for me and I also use saline to help mucous thin . Good luck stay strong we need to dig deep within ourselves when we have these conditions and keep as cheerful as possible. Not always easy I know but try and find a laugh a day watch some thing funny on you tube if there is no one around to cheer you up . Good luck

[janet1944 in reply to fcag2001]

Thank you fcag 2001

I am making notes from my replies nebuliser + a good laugh. hopefully I can get some help.thanks Janet

[ol-ly11 in reply to janet1944]

Where I live there is a community respiratory team, so there is an oxygen nurse, respiratory nurse and also a physio. We can phone in and ask for help. I have had a respiratory nurse come to me when first out of hospital and have had the oxygen nurse for review. I also was given the number to contact her whenever I needed to. One of theses nurses should be able to assess you and then suggest to GP if she thinks will help. Good luck.

[janet1944 in reply to ol-ly11]

Hello ol-ly11 you sound very well taken care of, I don't know if this team exists where I live, but I am adding you to my list ,I have had some eye opening replies,I know the oxygen nurse works from a health centre which is about six miles away on Tuesdays, I will ring the centre and ask to be put through,hopefully I will get an appointment sooner. I had to ring the Doctor this am for a rescue pack, I had to go and collect it this evening from my nearest Tesco, fingers crossed. Thanks again I am so glad I decided to ask for help, I read all the posts,but didn't want to appear needy, I'm usually a very positive person but these lungs are really getting me down, I hope to post better news next time best wishes to all Janet

[fcag2001 in reply to janet1944]

Never be afraid to ask for support or help. This is a fantastic group of support . Good luck . Keep smiling if nothing else it helps the chin stay up !

[locococco]

I was given a good few years ago now a tablet UNIPHYLIN when I found my spiriva and symbicort were not working as efficiently 1 tablet in the morning and 1 tablet at night it was like a new lease of life I am still on this and it works for me maybe ask about that

[janet1944 in reply to locococco]

locococco. Thank you for your reply I have looked up Uniphylin. Sounds good, I will ask about it when I get to see my Doctor, Oxygen nurse. I very rarely see the Doctor, but I am making a list. Thanks again Janet.

[JoHarr]

@janet1944 Hi janet, I know what you mean about appointments, makes me stressed and short of breath, usually get a cab to make sure i get there in the easiest way. I wondered if you were suffering from lack of exercise which can happen easily with lung diseases and cause you to get very out of breath just moving from one room to another and feel that your medication is not working when you are just getting out of condition. Aerobics or a stationary bicycle or rowing machine may help if that was the case. It happened to me but after one session of self imposed activity I began to feel better and less SOB. Ask your health team for advice. Best wishes, Jo

[janet1944 in reply to JoHarr]

JoHarr sorry for my late reply, you sound like me, I do have a stationary bicycle, plus other gadgets, but I am unable to do any upper body exercises, as my arms feel like heavy weights on my upper body, they feel as though they need to be supported.

I was attending Pulmonary Rehab, in fact my fourth over the years, the last course I couldn't finish, chest infection impossible to get rid of ,still.

I am ringing my Oxygen Nurse on Tuesday as Tuesday is their day at the Health Centre, and try and make an early appointment,fingers crossed.

Maybe have better news next week, thank you for your reply much appreciated, best wishes Janet.

[JoHarr in reply to janet1944]

janet1944 Hi Janet, Thanks for your reply, good luck with your appointment. I haven't been to pulmonary rehab yet although my doc tries to get me on it when I see him which is as rarely as possible. I am impressed that you have four under your belt so you must know all these ways to look after yourself. Just getting to the session seems as hard to me as all the intensive exercise. I also have access to a stationary bicycle but I hate it, uncomfortable saddle and easy to overdo it and get to that desperate out of breath state. I've been doing squats or half squats lately as I was losing to much muscle from my legs and achieved good visible results eating lots of protein before and after like tins of sardines, eggs, mugs of milk, beans and peas, bread and cheese. The rowing machine is much kinder and more comfortable but not much good for legs but good for upper body. I don't know about you but I have trouble putting weight on and keeping it on without eating bad food, started eating choc digestives again, loads of calories in those. Doc put me on Seretide 250 which has helped to keep chest infections away but the steroid in it is not nice for the skin, I also take vit d3 which I believe also helps. I'm looking into steam inhalation with essential oils at the moment, kind of old fashioned but I am willing to try most things within reason as I still can't walk far before resting even with the new muscles. Good luck and best wishes, take care, Jo