TRIMBOW HELP

[pasquino]

Hello everyone ,

I need advice from those who use trimbow; I have COPD and have been living with only one lung for 5 years, I have never used bronchodilators but I have always relied on exercises, a good diet and of course no smoking or alcohol.

I must say that I did very well, especially because I avoided the side effects of the medicines.

Now, after being admitted to hospital a year ago, I am on oxygen therapy (1 litre) which helps, but I wanted to try to avoid it; I can do without it but I would have appreciated a little help to avoid it completely when I move.

I have a battery-powered concentrator but I would really like to do without it (short battery life)

So I decided to try Trimbow... I must say that so far (only used for 10 days) I haven't felt any negative effects, but I must also say that the positive effect is barely noticeable, I was wondering if, as with the others bronchodilators, the effects will be felt in full after weeks or months.

I would therefore appreciate opinions from those suffering from COPD (not asthma) and emphysema

Thanks in advance for your answers and happy new year everyone.

Pasquino

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[panthor]

Hi pasquino, I have bronchiectasis & copd, my story with Trimbow is that the first 2 months of using it I was struggling with my breathing, breathlessness & coughing.

I was about to give up with it but was advised to carry on and the 3rd month was almost like something just clicked and my breathing became clearer, I was a lot better with breathlessness and could walk further and my airways seemed a lot calmer with less coughing.

I have now been on Trimbow for 3 years, I still have exasperations but my life is a lot better with Trimbow.

Of course we are all different and different medications suit some and not others but just thought I would share my story with you.

[pasquino in reply to panthor]

Hi,

Many many thanks, I will keep using it , luckily I did not have any of the side effects but I wanted to be sure that it could be worth going on with it.

Pasuino

[Osha in reply to panthor]

Hello Panther. I was very interested in your post. I have been on trimbow for a couple of months now. If anything my breathing is worse Sats are ok. So I will be patient and see what happens. Thanking you

[jillygirl]

Hi Paquino, I dont know if it helps but I also have just one lung and copd, I have been on trimbow and salbutamol for about 6 years now, but I have noticed the benefits of the inhalers are not as good as they were , My nurse said there isnt anything she can give me now, but has put the respiratory team in charge for me .. Ihave had pulmonary rehabilitation which did help but not as much as I would have liked. This was fine as I didnt expect miracles. My oxygen levels are always good . My sob is down to build up of mucus and lack of exercise due to being short of breath.

I have a new regular respiratory nurse who keeps in contact with me either at home or by phone. Last week she brought a nebuliser for me which used the Salbutamol vials and the Saline ones. She also prescribed some acetylcysteine 600mg effervescent tablets to help with the mucus. I have noticed a big difference and my breathing is improving.

I dont think this will be any use to you but I have been 11 yrs since I had my pneumonectomy.

I wish you all the best, 😊

[pasquino in reply to jillygirl]

Thanks for your reply,

Soon after my pneumonectomy(5years ago) I decided to stick to exercise (mainly walking ) , rising the distance a bit at the time, very good mediterranean diet ( I am italian and chef) and daily inhalation with saline solution with a drop of eucalyptus oil.I did not want to use any medicine, so I tried to see if a natural approach was useful.

It worked very well , not using medicines I avoided the assuefation to them and my body reacted with a self repairig action.

Of course I am still battling with breathlessness but at least i have no side effects.

PS If you (like me) have good SPO2 stats ,try to be referred to a specialist in pulmunary hypertension (I arranged a private appointment -250 pound-) because that could be also a cause of dyspnea and lack of breathing capacity; mind you ,if you go through the nhs road it will take months.

In my case after a right heart catheter (on nhs) a mild hypertension was discovered and now I have an appointment with the specialist to see if something could be done (low dosage of viagra); finger crossed ....😏

It is a long way, but it could be worth a try....

All the best to you and happy new year!

[jillygirl in reply to pasquino]

Thanks for replying. Any tips are always welcome.

Happy new year and hope you get the viagra. 😊

[Pilgrim87]

I have been on trimbow for over 4 years it’s been a great help to me, and sometimes saves me from struggling to breathe.

[Suzie42]

I was told at least 6 weeks for full benefit of Trimbow

[Timberman]

Fascinating that you can do so well with COPD on just one lung. You will be down to 50% O2 uptake regardless and with emphysema on the remaining lung you will be well down even on that.

Trimbow is three drugs in one. (ema.europa.eu/en/medicines/....

I have been on it for some time now and it has been pretty helpful I believe and with no known side effects. I still get exacerbations of course.

I note you are on O2 therapy of 1 litre per minute. Mine is 3.

But you mention no other medications which I find surprising.

I think you should let the Trimbow take its course for a while and see if it helps; I think it will.

[pasquino in reply to Timberman]

Hi Timberman,

Thanks for your reply.

My saturation seating with NO OXYGEN while I am writing now is 91 ;

My consultant wanted to put me on medicines since my surgery (5 Years ago) but I was always reluctant and decided for loads of light exercise, good food , no smoking, and no alcohol plus daily inhalation of saline solution with one/two drops of good quality eucaliptus oil, and of cours

I managed quite well for 4 years but the last year I was stuggling and I decided to be on oxygen ...strangely the situation did not improve a lot therefore aI decided to invest in a visit with a PRIVATE cardiologist who suspected that there was a chance of a light pulmunary hypertension that was then noted during a right heart catheter.

Now I am waiting to see the specialist at Royal Brompton to see if some medicines (sidenafil) could hopefully give me a little bit more of breathing capacity; I will also go for a second rehab: the first one helped me more than any medicine.

Thanks again and Happy new year to you..

Pasquino

[Timberman in reply to pasquino]

91 at rest and no augmentation is pretty good - the range for a severe COPD is 88-92. Have you been seen by an oxygen nurse to check your blook gas levels? While your specialist will be good I wonder if the local NHS COPD team would help. I do not know where you are but there is always a team in each health area. Mine here, and before in Norfol, is very. very good and frankly better than the GP.

[Jaysha]

Hi PasquinoI have been using TRIMBOW for a while and it does help control my COPD. I don't wheeze as much and if I get breathless I do my breathing exercises. I hope this helps. Feel free to contact me at any time.

Wishing you a very happy 2024

Kindest Regards

Sharon

[pasquino in reply to Jaysha]

Thanks for your reply , and best wishes for a "oxygen rich" 2024..😊