Inhaler: I was diagnosed with COPD... - Lung Conditions C...

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Inhaler

Janann25 profile image
45 Replies

I was diagnosed with COPD about 4 years ago. I had another lung function test the following year but have only had “telephone lung function tests” since then😩. The respiratory nurse at my doctor’s surgery retired last month and has not been replaced so I’m finding it difficult to get advice.

Just before she retired, she prescribed Trimbow with the usual 2 puffs twice a day. But, by the second day, I was experiencing bad shakes so phoned our local pharmacist who is really helpful He felt the dose was too high for me and suggested 1 puff twice a day. I found I still trembled a bit so the pharmacist suggested I spoke to a doctor. Luckily I was able to have a phone call from a doctor who said the Trimbow was affecting my nervous system and to go back to my Anoro inhaler which I’ve used for about two years.

Unfortunately, I then tested positive for Covid and, because I also have an autoimmune illness, had to have an antiviral transfusion at the hospital. I’ve been clear of Covid for over two weeks but am very tired and, more importantly, having problems with my breathing. I’ve no idea when I’ll be able to see a doctor/nurse so I’m hoping someone here will have experience of Trimbow. I have to admit that the doctor who put me back on Anoro didn’t seem very knowledgeable about COPD and I think he just prescribed again what I’d had before.

I’ll still try to see/speak to someone at the surgery but, because I’m trying very hard to keep active still but finding it difficult, I’m tempted to give the Trimbow another go. Just wondering whether anyone has had this trembling reaction and, if so, did it get better?

Sorry this is such a rambling post but I thought it best to give the full story so you would know a bit more about me. I was a member of this forum for many years when my late husband had COPD but never dreamt that I would need advice from here for myself!!

Thank you, Jan

45 Replies
sassy59 profile image
sassy59

Good morning Jan, so sorry to hear of your diagnosis. I really hope you can get the right inhaler for you be it Anoro or Trimbow or something else entirely. It’s difficult to get things sorted out these days but don’t give up, you will get there. Thinking of you.

Carole xxx

Janann25 profile image
Janann25 in reply to sassy59

Thank you - I shall definitely get on the phone to my surgery, exactly at 8am on Tuesday!

Patk1 profile image
Patk1 in reply to Janann25

U can ring 111 if need be and see out of hrs dr

Janann25 profile image
Janann25 in reply to Patk1

Thank you but I think I’ll be ok until Tuesday 🤞

knitter profile image
knitter

I am sorry I have no experience of Trimbow , but I know Ventolin gives me the shakes .

Have you a peak flow meter or an oximeter to hand if so note down the readings .

If your health professional is not open today , I would ring 111 if you are in the UK .

Tell them your symptoms , your Covid experience and health issues .

Best wishes .

Janann25 profile image
Janann25 in reply to knitter

Thank you. No, I don’t have a peak flow meter - not even sure what it is😉 - but I have an oximeter and my oxygen is still at 97%. I’ll definitely chase this up asap.

Bingo88 profile image
Bingo88 in reply to Janann25

It's good that you're oxygen level is still so good. If you don't get any help from your surgery I would ask to be referred to a Respiratory nurse or clinic. I just ring them directly if I have a problem with my severe copd and find them very helpful. You have to have someone to keep an eye on your condition and telephone consultations are useless to you. Brian

Janann25 profile image
Janann25 in reply to Bingo88

I agree, phone calls are a waste of time. But the respiratory nurse at my surgery has retired and there’s no separate clinic. But I’m sure I’ll get something sorted - says she with her fingers crossed 🤞

Charlie_G profile image
Charlie_G

My understanding is that all bronchodilators, be they short acting like ventolin or long acting like the fomoterol in trimbow, can cause shakes and trembling as side effects. Different drugs effect different people in different ways, but essentially what you’re experiencing is likely the same as those who are a bit more sensitive to ventolin: although I don’t have a diagnosed lung disease myself, I had the pleasure of ventolin following anaphylaxis on two occasions last year and found it made me incredibly jittery even when I took only a couple of puffs as an inhaler rather than the nebs they gave me in resus. Conversely, my daughter doesn’t experience trembling/shaking even after 10 puffs, but she’s now been taking it for 14 years, so 🤷‍♂️

Hopefully someone else will come along and give you direct experience of trimbow, but my understanding is that inhaler jitters can wear off over time and repeat exposure for some people.

HungryHufflepuff profile image
HungryHufflepuff in reply to Charlie_G

Hi Charlie, that's interesting about your daughter with ventolin. I took it daily for years and never got shakes from it. Since moving here I was told this is not the done thing and was moved onto other inhalers, with ventolin as and when needed. When I do use it now I get horrendous shakes and jitters and feel like I'm going to pass out. I guess the body must acclimate when used regularly.

Charlie_G profile image
Charlie_G in reply to HungryHufflepuff

It can be a combination of things, I think - some people are just more sensitive (she’s never had shakes from it, and in contrast to me, I know a couple of adults that have gone on it without any issues, including my mum), but there is definitely an element of becoming used to any medication, hence why many side effects can subside with time if you can tolerate them long enough. Bod routinely takes 8 puffs a day (4 puffs pre physio BD) and has been on that dose for around 8 years, as well as having it available prn. She rarely needs it prn unless fungus are causing major problems, but when she was really bad prior to moving, she was put on 4 puffs every 4 to 6 hours, and as a baby was on nebs up to 4 times a day. In her case, it’s kind of no surprise that she’s tolerant to it, but my own experience of it was much more like yours - decidedly not nice!

Janann25 profile image
Janann25 in reply to Charlie_G

Thank you. My pharmacist told me that Trimbow is a very effective inhaler but I would just like to know whether it’s safe for me to use it and hope that the side effect stops. I was really hoping to spend most of the weekend pottering on my garden but I’ll just have to be a lady of leisure instead! I’ll start pestering the doctor’s surgery first thing Tuesday.

CDPO16 profile image
CDPO16

Hi Jan, I'm sorry that you are struggling with your breathing. It seems that you really need a reassessment of your medication and this is what I think you need to push for with your surgery.Unfortunately many practices are still not doing spirometry tests to aid this. Keep a note of everything and get an appointment as soon as possible. There are many inhalers that may be more effective for you. In the meantime use whichever inhaler you feel the most helpful. I have no personal experience of either Anora or Trimbow. Best wishes

Janann25 profile image
Janann25 in reply to CDPO16

Thank you. As I just said to Charlie G, I’ll just have to be a lady of leisure until I can get something sorted 😊

CDPO16 profile image
CDPO16 in reply to Janann25

I hope you manage to do that after Easter. At least it's good weather for being a lady of leisure if you are able to sit out a bit. Do let us know how you get on xx

Janann25 profile image
Janann25 in reply to CDPO16

Will do. I’m off out to lunch with friends shortly so I will definitely be having a leisurely afternoon 😉

Damon1864 profile image
Damon1864Volunteer

Hello Janann and welcome back to the forum. I'm on Trbow and I shake terrible, I never thought of connecting it to the Trbow. But yes it only happened once I started on Trimbow. , So thank you I will be contacting my GP on Tuesday. I hope you get sorted and thank you. Please let us know how you get on have a Happy Easter and a lovely weekend and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Janann25 profile image
Janann25 in reply to Damon1864

Well there you go - out of my problem comes a solution for you 🤣. I can remember how lovely this forum was when I was always worrying about my husband and it’s good to know there’s still support here. I hope you have a good weekend. Jan

HungryHufflepuff profile image
HungryHufflepuff

Hello Jan and welcome back 🤗

HollyBoyd profile image
HollyBoyd

Hello Jan, good to know you are returning to the fold! What Charlie G was saying is very interesting re Trimbow. I have been using it for about 4 years with no problems, so it is a shame it gave you the shakes, did the shakes last for a while or just never went away? I hope you can get some answers from your GP next week. Till then enjoy your Easter weekend xxx😊

Janann25 profile image
Janann25 in reply to HollyBoyd

Hi. I have to admit I really never considered I would be returning here again after my husband passed away - just shows what even social smoking for a few years can cause. And I’ve not smoked at all for 30 years. But, heyho, it is what it is. I only used the Trimbow for a couple of days and at first I didn’t associate the trembling with the inhaler, I just thought it was due to the treatment for Covid and the Covid itself. Then I first spoke to the pharmacist and then to the doctor who just put me back on Anoro but, as I’ve mentioned, I think I really need something stronger.

I’d had plans to work on my garden this weekend but I think I shall just sit in it and read! I hope you also have a pleasant relaxing weekend.

Jan

Jaycee40 profile image
Jaycee40 in reply to Janann25

I’ve been taking Fostair for many many years & still get the shakes from time to time but it goes away after a while & I really don’t take too much notice of it. I’ve had COPD for 17 years & this is the only medication that affects me like that. I think the advice given on here is very good & perhaps you should check your symptoms out with a health professional.

Janann25 profile image
Janann25 in reply to Jaycee40

Thank you for your advice and, yes, I intend to phone my surgery on Tuesday and hopefully speak to a doctor 🤞

HollyBoyd profile image
HollyBoyd

Thank goodness there is such a place as the forum, where you can find so much help. I am sorry to hear of the loss of your husband. I really hope you can get your inhalers sorted and you will feel the benefit. I guess having had covid there could be some after effects that are causing problems. Enjoy sitting in your garden with a book, the weeding will still be there next weekend!! Take care xxx

😊

Piper21 profile image
Piper21

Hi Jan, I’m on Trimbow and also suffer with tremors. Must admit I didn’t connect it could be the inhaler ( not sure why 🙂) until reading your post. However I am good on it so my personal thoughts are to stick with it . I would rather breathe freely….I hope you manage to sort something out soon

Janann25 profile image
Janann25 in reply to Piper21

Thank you for sharing your own experience - I’m just hoping there is another inhaler which can help me. I find my current one, Anoro, works until about mid- afternoon, just as if I need another dose. Hopefully there will be something else to help but, as you say, better tremors than lack of breath!!

Hi I ve been on Trimbow since January of this year it does work very well in combination with Ventolin but again same as the Ventolin does give you shakes! I don't have a respiratory nurse at my surgery either just s wonderful GP who I also know from work previously, hope you get sorted soon

Alberta56 profile image
Alberta56

hello Jan. I hope your problems can be dealt with promptly, and that the weeds aren't taking advantage. At least the weather is kind for sitting outdoors. xxx

Janann25 profile image
Janann25 in reply to Alberta56

Absolutely - weeds can wait, lovely weather must NOT be missed🌞. I hope you are also having a good weekend.

Alberta56 profile image
Alberta56

My lovely daughter has been gardening like mad - makes it look easier to tackle the jungle.

Janann25 profile image
Janann25 in reply to Alberta56

I don’t have family to help me but I manage quite well. Once I’m “sorted” I’ll post a photo of my efforts

Alberta56 profile image
Alberta56 in reply to Janann25

Please do. My daughter's help is erratic, but welcome when it comes.

JJ_7 profile image
JJ_7

Hi Janann. I also have shakes with Salbutemol but tremors stop after 30 mins or so. I think the earlier advice to contact your GP is a very good idea. Also, have you asked your GP to refer you to your local respiratory clinic? My clinic is very good seeing me every 3 months so if I have any queries, I just pick upi the phone between appointments.. Wishing you a very happy Easter :) x

Janann25 profile image
Janann25 in reply to JJ_7

And a Happy Easter to you 🐣 Unfortunately we don’t have a local respiratory clinic and a referral to the hospital is taking at least six months 😡. So I have no choice but to try to see a GP. I’m not looking forward to trying to get an appointment. Our surgery is usually very good but so many of them are off sick, appointments can take up to a month. Hopefully it won’t be that long 🤞

annaemmalucy profile image
annaemmalucy

Trimbow did that to me too. The only one that works for me is Seretide, but as soon as I see any doctor not familiar with my bronchiectasis they automatically assume that I have asthma too. I just grit my teeth and explain 😀. 111 if it gets worse

Kate124 profile image
Kate124

It seems to me that your suffering from the after effects of covid. I have copd and pulmonary hypertension. The effects of covid left me more breathless on and off for about 6 weeks. I'm on trimbow but doesn't help. I wouldn't advise you go back on it against docs advice. Your sats are brilliant for someone with copd. I'm lucky if mine are above 80. I think you maybe need to rest up to completely recover from covid. Give your body time to heal. It's not just testing negative, the effects can carry on for months x

Janann25 profile image
Janann25 in reply to Kate124

I really try to rest but jobs still need to be done - and I’m my own worst enemy for not taking it easy. I promise I’ll try😉

micox profile image
micox

I've used Anoro for some time and I find it excellent.

Janann25 profile image
Janann25

Yes, I’ve found it excellent for a couple of years but, since having Covid, it doesn’t seem enough.

Hobbledehoy profile image
Hobbledehoy

Hullo Janann. I’m sorry that you are being unsupported. I know myself how easy it is to get into a muddle with various treatment options. The BLF helpline is very much worth trying. You need informed help. Maybe you would ask the surgery for a) a face-to-face with whichever partner is most interested in respiratory, or b) a telephone consultation, + a referral if necessary. Perhaps you could write down beforehand what you need to say & ask.I have COPD with asthma overlap, and used Trimbow for several years without problem, which doesn’t help you. Recently a Pharmacy Clinician, a new idea, interviewed me & decided to change me to Trelegy. Surprisingly, it cut my wheeze at a stroke, and I seem to be doing rather well on it, though I t may not be suitable for you.

Be determined to access knowledgable help for yourself, and keep in touch. All the best x

Janann25 profile image
Janann25 in reply to Hobbledehoy

Thank you. Yes, I previously used Anoro with very good results but I just seem to need something “stronger”. Of course, it would be ideal to have a lung function test to know just what level of COPD I’m at but without access to a respiratory nurse, I’ll just try to get to a doctor and hope to get advice that way. I’ll report back as soon as I get some help!

Hobbledehoy profile image
Hobbledehoy in reply to Janann25

Good morning Janann. I notice you talking with Kgmj about rest. It will help you to accept your energy levels & accommodate them as a medical post-covid fact. There is no virtue in doing all the jobs and damaging yourself in the process. It could serve you well to refer to our life in lockdown, when we had to develop a new routine, spreading out the jobs to fill our time, and find gentle new interests to keep us going in the meantime. We were obliged to Live Slowly, but sometimes it is constructive. Re- COPD classification, I have noticed that my surgery avoids such discussion with me. And really, how would it help me? My condition at review is treated as necessary, I carry on with my life as fully as the condition permits.

It is as it is. Good luck honey. Scorn not the GPS! They still know a lot more than us, on the whole!

Janann25 profile image
Janann25 in reply to Hobbledehoy

I would never dream of scorning a GP - my problem is in getting to see one!!

Mickymoo profile image
Mickymoo

I would ask for the trelegy inhaler then. It is the next one up from Anoro. Has an extra 'ingrediant' in it. Sometimes inhalers can make you jittery for half hour or so after you use them. Unfortunately thats just the way they affect some people. At times i get jittery after using mine and other times im fine. Gp's do try their best but they seem to know very little about copd and the right medications for whatever breathing issue you have x

Janann25 profile image
Janann25 in reply to Mickymoo

Thank you. Once I actually get to see a GP, I’ll let you all know how I get on.

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