Hi, i have had copd and asthma for quite a few years, a couple of years ago my breathing got worse so was referred to the respiratory clinic where they put me on Fostair and Spiriva Respimat which I used as instructed and had no problems until January this year I was finding it increasingly difficult to breath when walking so I went back to the doctors who told me that I was on the maximum medication that they could give me so he referred me back to the respiratory clinic, my appointment came through for JULY23 and then was cancelled I was devastated, this is really affecting my everyday life not just walking, I can’t do hardly anything by myself due to the breathlessness so anyway I got sent a new appointment for September 23 so I went back to the doctor and he asked me what I wanted out of my appointment so I said either for him to help me to breath better or a closer appointment so he changed my inhaler to Trimbow 172/5/9 and I’ve been using this for 9 days and feel even worse, how much longer do I have to struggle before going back to see the doctor? Oh and I also use a monthly rescue pack 😢 TIA Michelle xx
New Inhaler: Hi, i have had copd and... - Lung Conditions C...
New Inhaler
OK - I had an important hospital appointment cancelled today until December 23.
I have asthma and COPD - Now mainly Dyspnea troubles my breathing.
I am on Fostair - Atrovent and Salbutamol .
I found Fostair to prevent OK
Out of the three I find Atrovent. (Ipratropium bromide) the best fir relief .
In short I find Fostair must help prevent - I ind the best reliever is (Ipratropium bromide) the green one. My point being has your GP prescribed you the green one like (Ipratropium bromide) or the Blue Salbutamolas you don't mention them?
Hope you get sorted not good when breathing is bad.
Thank you for your reply, I do frequently use the blue Ventolin inhaler, my new inhaler is a Trimbow 3 treatments in 1,thats a green one. I’m really at a loss as what to do xx
if you’re using the blue inhaler frequently then use it four times a dsy routinely snd in between if needed. You can’t overdose on it. Do you use a spacer as this can help to get full dose when you’re breathless. Take care 🦊xxx
Yep just looked at what's in trimflow. - I would not like it. I have a green one Atovent - Nothing else in the - The Blue and Fostair. The steroid is in the Fostair - I like mine separated.
Out of interest I am not advising I am not allowed to do that I could not anyway.
I just wondered if you are struggling very bad with Asthma. Have you been ill enough to be given oral steroids? That's what I have in reserve for a COPD flare up.
I’m not sure if it’s my asthma or copd that flares up but I’ve been taking monthly steroids and antibiotics because of it
Can you not get you GP to contact your lunk specialist? I have had hospital appointments cancelled and I had no option but my GP. I can't advise you at all but my GP got me sorted at hospital, I have also rang hospital and got my appointment moved forwards Gotta be worth a try.
I do sympathise , I have COPD and asthma too .
Tried various combined inhalers , Fostair was one , but I find separate preventer and reliever suit me best . But I was also given a permanent 5 mg oral steroid by my consultant , now my gp is trying to wean me off them …feel worse .
Try and ring the ALUK helpline …open again on Monday .
Hi im on Trimbow have been foe a few years im on the strongest Trimbow now which is the one your on I was on the lower one for a few years but recently put on the higher im not sure why they started you off on the highest dose but I do know it should of helped you not make you feel worse its wrong that hospitals keep changing appointments you should also have a rescue inhaler as trimbow you take twice a day
Oh dear, it sounds like you are really struggling with these meds. Appreciate quite a few people have already replied to you with advice.
Can I add a couple of things ? Can you request an urgent appointment from your Primary Care Network pharmacist? These are pharmacists who work within your surgery to regularly review medication and offer advice and new prescriptions if possible.in my experience they can be more appropriate to speak to when it comes to meds.
COPD/Asthma can be tricky to manage sometimes, I know that for myself.
When you have your respiratory appointment would you be willing to discuss a drug called Roflumilast? It doesn’t suit everyone with severe COPD but it has worked well for me ( once I got through the side effects ) it has transformed my health for the better!
It is only prescribed in the first instance by a consultant and once settled in it the GP can take over prescribing it.
At that appointment you could also ask for a PIFU - Patient Initiated Follow Up. So that it would make it easy for you to refer yourself back to outpatients if you need to. A PIFU usually lasts for a year.
Hoping you feel better soon.
Go well,
Pauline
I have acute pulmonary fibrosis and severe emphysema both lungs
I came off Fostair and trim now and now have Incruse Elliot’s every morning and carry sabutemol whenever I go out the change for me was really good
Hi Shell461
Have you had an X-ray to check your lungs? Are you sure you haven’t got an infection if your breathing has got considerably worse. If you’re struggling could you go to your nearest urgent care? Hope you feel better soon.
I know where your coming from, I was having trouble and just like you they changed me from duaklir genuair which worked great for me for years to trimbow. Never again, after persevering for 1 month my breathing got worse and my side effects were feeling sick,leg aches,headache and a few others. I have now gone back to duaklir genuair. Trouble is I still have aching legs after finishing 4 days ago. I don't understand why they treat us like guinea pigs. All I can suggest is keep at them as they should be trying different ways to help you till your appointment comes around. Umpteen times a day if that's what it takes. Good luck 👍
Hello Shell. It's clear from reading posts on this forum that not all drugs suit everyone and that it sometimes takes several changes of inhaler to find the right one for each individual. As for steroids, taken over a long period they can make the skin paper thin. I don't know what other side effects they have, but I've got the scars on my arms to show their effect on skin. Best wishes- I hope you can find a solution soon. It probably means going back to pester your doctor.
really sorry to hear how your struggling. COPD is an awful thing. My husband has it and mostly I have to do everything because he just can’t manage as he once did and it’s very upsetting for him. It’s getting frightening I think that the NHS is in such disarray now that getting appointments is so hard. The doctors have a duty of care to us. I always send an e mail to our GP setting out clearly what’s wrong and how it’s effecting it. I start it off ‘please show GP this and put it with our medical records’. They tend to act when it’s in writing and there’s a paper trail. Hope you have some support. People on this site seem lovely, understanding and supportive. Xx
Hi, I went through six different inhalers to find the one that best suited me. Also as I am under respiratory clinic at hospital they gave me a card for the integrated respiratory team which I can call 7 days a week for help and advise specially for breathing and inhalers. If you have the number give them a call if not get the number from your local hospital and then you can talk to a respiratory nurse and get the help you need. good luck. kevin
Hi Kev60 I won’t see anyone from the respiratory clinic until September, I’m going to see the doctor on Monday (if I can get an appointment) thanks for the advice though x
Please excuse my ignorance but but what is a rescue pack
It’s antibiotics and steroid tablets x
Trimbow has been great for me, but of course we are not all the same. Do you use a flutter or a perps to help move any phlegm in your chest?
Has any body mentioned low dose morphine or Oxycodone for the breathlessness? I'm allergic to morphine so the Oxycodone was prescribed and has helped. I'm also on codeine linctus for the intractable cough. (Also inhalers, azithromycin etc.)I have severe copd and bronchiectasis and I'm under Harefield lung transplant clinic.
I’m on carbosisteine 2 tablets twice a day and Montelukast at night, as well as the Trimbow and Ventolin inhalers.Nothing else has been mentioned but it’s really not good the waiting times to see someone. Oh my goodness my breathing problems seem nothing in comparison to yours xx
But not being able to breathe is awful so I hope you find something that helps. And getting to see someone about it is a nightmare!
hang on in there shell! I’m finding all these responses really informative. My hubs on Trimbow. It seems to help but I’m alarmed he has rashes and skin lesions..he’s never got to respiratory clinic. Just gp dishing stuff out. He’s also on medication for high blood pressure. It all seems to be getting the right mix for an individual? I think I’ll take one of the posters advice above..take all the meds to a chemist? Might give some insight on interactions? It seems so difficult to actually get in front of a GP now? Why? Even with his rashes we had to send in (pretty disgusting!) photos! To which the answer was..‘I don’t know it looks like scabies’ gave him steroid cream which helps, but that’s more steroids….😳
GP stands for general practitioner.....he practices medicine on you. That's why they're no longer called doctors. It's no longer called a doctor surgery where doc would cure you with antibiotics it's now called a doctors practice because they will practice drugs on you until they find one that works. When you show up you agree to be practiced on. What a shame how things have worked out. Hope your husband is ok....trimbow was no good for me, my bones hurt so bad the sheet felt like iron, my poor can was sent FLYING when she stepped on my ribs to kiss my nose ( really she's just smelling my mouth to see if I dared to eat something tasty without giving her any) it's been 7 weeks now since I stopped and my bones are still painful and I now have to put a cussion on my chest so she can climb up. A rash can suggest kidney problems and I know trimbow has an effect on the adrenal glands which are situated above. I'm not a doc but if it were me I'd stop at once and call 111. Sometimes you have to make it worst case scenario when calling but they will help especially of you say GP won't help/can't fit you in etc. Sometimes you have to lay it on thick but you've paid enormous amount of NI over a life time and are certainly entitled to the service you've paid for!! Good luck
Thank you! It feels like we really have to educate ourselves these days. That’s why I’m so grateful for this site.
so sorry to hear you have been struggling so much and not getting the support you need. My advice would be to phone nhs 111 and ask them for their advice. I cannot fault them. Please try and be strong, you might feel alone but you are not x
TRY INCRUSE ELLIPTA TOGETHER WITH RELVER ELLIPTA AS THESE ARE 24 HOUR INHALER/STEROIDS. TAKEN AS ONE PUFF DASILY
OR
TRELEGY 92/55/22 ALSO A 24 HOUR INHALER - AGAIN ONE PUFF DAILY
ALL OF THE ABOVE ARE TO BE TAKEN AT THE SAME TIME EACH DAY THUS 24 HOUR REKIEF.
I HAVE JUST STARTED THE TRELEGY - ITS FINE BECAUSE NOW IT IS ONLY ONE INHALER WHEREAS PREVIOUSLY WHEN ON THE INCRUSE AND RELVAR THAT WAS TWO INHALERS SO JUST HAVING THE ONE NOW IS GOOD.
CONTINUE TO USE YOUR VENTOLIN INHALER BUT USE WITH A SPACER - GP CAN PRESCRIBE - AS THIS ENABLES THE INHALED MEDICINE TO GET TYO THE LUNCH QUICKER.
TRY SITTING FOR ABOUT 15 - 20 MINUTES AFTER YOUR MEDICATION AND SEE IF THIS MAKES ANY DIFFERENCE TO YOUR BREATHLESSNESS - HOPE SO. THEN TAKE IT SLOW BUT STEADY DON'T RUSH JUST BE QUIET AND CALM. BREATH IN THROUGH THE NOSE AND OUT THROUGH THE MOUTH A FEW TIMES.
TRY IT
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Hi Shell,
Are you using a spacer? When breathing becomes difficult, your inhaled medication will not reach down into the lungs, unless you take your time with a spacer or a nebuliser
Good luck
I have started using a spacer the last few days though I’m beginning to think that Trimbow is not right for me xx
I was taken off Spiriva respimat and given Trimbow when I was in hospital with a severe chest infection. I struggled on with it for 10 days or more but just got worse. I went back on to Spiriva and was better for it. Trimbow seems to be the 'in' thing with the experts at the moment but it doesn't suit everyone.
Trimbow didn't work for me at all!! Made my bones ache so bad they felt broken chest felt clogged. I ask for a change if you can. My nurse says there's loads I can try but after trimbow I'm frightened to take this new one elipta
It isn’t doing very much for me still to be honest, I went back and saw a different Gp who said that they can’t change the inhaler and they can’t do anything more for me I have to wait until the end of September when I see the respiratory nurse. I saw the asthma nurse last week who said that the respiratory team had been in contact with them and ask for me to have a spirometry test done before they see me so that’s being done on Wednesday. I’m fed up with this struggle to breathe everyday xx
Chest tightness and shortness of breath with normal x-ray and CT Scan
Inhaler
Inhaler post pneumonia, awaiting lung scarring diagnosis?
Feeling overwhelmed 
