Anticipation : Hi I wonder if anyone is... - Lung Conditions C...

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Anticipation

22 Replies

Hi I wonder if anyone is happy with their treatment, as in inhalers drugs, does anyone find that they actually work, I am at a stage whereby I am just sitting waiting for the end, as just standing is becoming a struggle. My inhaler Symbicourt was changed two weeks ago to Flutiform ,I have gradually got much worse, put myselfe back on to Symbicort.

Is anyone using something amazing. I did use an oxygen concentrater, was removed two months ago, I use an inogen for moving around.

Can anyone tell me Yes such a drug ,inhaler Works.

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22 Replies

I find that Symbicort works partially for me

I am not happy with Ventolin though as my hands shake after taking the inhaler

in reply to

I also use Spiriva, + steroids and Doxycycline every two weeks. Do you feel as though you are getting the right care, or not. I get No care other than a monthly repeat. I have tried for twelve months to get a review, but get a new prescription instead. I do think that age has a lot to do with the care you recieve, in my case I should say. I am determined to get some information to use as leverage , I will not sit here any longer.

in reply to

forgot to add if you can't manage with the prescription recommend you go to your health care professional and talk to them

in reply to

That is the problem I have dragged myselfe to see the Doctor, a few times this past year, with that in mind, came out with a prescription, I fully intend to put my foot down, and maybe demanding will get me seen by someone.

I am on fostair and have experienced an amazing difference with my breathing, the downside is bruising and skin thinning; but I am so much better and mobile! I hope you find something that works well for you. Xris

in reply to

Thankyou for your reply I will look that up and add it to my list of things to discuss with the ,not the Doctor ,I need to see a specialist. I actually saw one five years ago. My fault for sitting back and being nice.

piggi profile image
piggi

Five (!) years ago! That doesn't sound very good. I suggest you make a fuss...... good luck x piggi

I'm on forstar spvira Avamys and sol--Phyllin as well as salmol

mmzetor profile image
mmzetor

I didn't have very good help from gp had to see respiratory nurse at chest clinic once a year when I asked something about my inhaler she said she don't know much about them , Then she said she would ask gp if he would refer me to the copd nurses in the community which are based at local hospital ,which he did they come out to the house not sure if its available in all areas but once they was involved the care and support was unbelievable , inhalers changed ,if there is any thing they not sure about they go straight to consultant for an answer and are back next day to tell you , referred to see consultant twice in 3 months full lung function test ct scans , nebuliser then one of the nurses said because im youngest on their books im 40 she want me to go see one of the specialists at papworth or addenbrookes as she feels they can give me better care that they can but that they will still be there for me too , they also ring every few weeks to check if im ok if I need them to do any thing or come out and see me they really are angels , worth asking if your area has something like it too .

Jessy11 profile image
Jessy11

Why did your GP change your inhaler from Symbicort to Flutiform? Did you get a reason? I feel you should go to your doctor & ask him/her what help you can get re meds. Maybe you've fallen through the net & have been forgotten. Kick up a fuss, demand answers, get all the help you deserve. Ask to be referred to a respiratory consultant. Whatever you do, don't just sit back & do nothing! You are worth it! Let us know how you get on. Take care x

Hi this doesn't sound right if you are so severe. I agree that it looks like you have fallen through the system. I understand how hard it is for you to stand up for yourself when you feel so ill, it is possible to take someone with you to the doctors? x

jimmyw123 profile image
jimmyw123

i see you have just joined the site anticipation,

maybe best need to take doctors advice here.

i'm on end stage copd [intend to be on end stage for a long time yet ]

but do use oxygen, nebuliser [salbutamol and saline ] spiriva handhaler, seretide, and relieving inhalers. i do believe they help.

hope you get the help you need

kindest thoughts

jimmy

Pantani profile image
Pantani

It doesn't sound as if you have been getting very good support. I see my practice nurse for my review. I have also seen consultants and had x rays,CT scan and Echocardiogram . I have also seen the pulmonary nurse at the hospital. My medication includes Seretide 250, Spirits, Ventolin received. I also take Uniphylin and Mucodyn. Get onto your GP about seeing a consultant. Not all GPs are experienced in lung conditions. It might also be beneficial to do a Pulmonary Rehabilitation course. Apart from the exercises the educational content is invaluable in dealing with COPD.

in reply toPantani

Thankyou Pantani and everyone else for their replies, I have noted all sorts of points to bring up When I get to speak to someone who will point me in the right direction. The oxygen nurse was amazing, but was unable to change my medication, everyone who I have spoken to have all re directed me back to my GP. Also I have over the years attended re hab and yes I agree it is worth it. I now attend, when able the Breath easy group, that is very informative. Also the W E A. Get Out Stay Well group, again brilliant, but I miss as many sessions as I attend. I am normally a very Get up and Go person, but it is getting beyond me. I will post my news when I have SOME.

casper99 profile image
casper99

Hello and welcome to the forum. I hope you get the attention you deserve from your GP.

You sound like your feeling very down and if that isn't usually you, then, someone should be doing something about it and giving you more support. Go get 'em Lol.

Good luck xx

in reply tocasper99

Thank you Casper, I am normally very upbeat, I have learned a lot from my replies, as to how well others are looked after , I did want to ask which areas people lived in, but thought maybe not.

casper99 profile image
casper99

I live in West Yorkshire, but, posters are from all over the country and quite a few are abroad.

Type, Stop Smoking, into the search healthunlocked bar on the top right hand corner and you'll find loads of posts that will inspire you to build up the will power to stop. xx

in reply tocasper99

Wow thank you for the information, am I glad I joined this forum, it really is amazing. I have a wealth of information and will use it to MY advantage. I live in North Staffordshire maybe you have more and better facilities in your area, thanks again.

Minushabens profile image
Minushabens

I can't really add much to what others have said, but keep hassling & pestering the docs to find what works for you. I'm also in W. Yorkshire so can't comment much on where to go but I'm aware N. Staffs NHS Trust has had its issues, so maybe that's part of what is going wrong? Don't give up though!!!

onamission profile image
onamission

I was on Spiriva capsule but found it very difficult to get in my lungs had my yearly test and they changed my Spiriva for Spiriva mist it is essay to use just load the inhaler once twist the bottom and press the button, the cartridge lasts a month 60 puffs.

Spiriva is good for keeping your lungs open and free from infection I hope this is helpful and your feeling better soon

peege profile image
peege

I have moderate asthma & take: Seretide 250, Carbocisteine to keep sputum loose, montelukast for the allergic aspect of asthma, Ventolin when I need it which is approx 4 x daily at present because I'm unwell, last but not least a steroidal nasal spray for totally blocked sinuses.

On the whole I'm pleased with my treatment - if I wasn't I'd be changing my GP.

All the best to you. Pm

Colours23 profile image
Colours23

Hi peg could you tel me more about montelukast for allergy,as I have allergy not being treated .please.

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