more meds

Hi All,

hope you are all well,

Have been prescribed Spiriva today, any thoughts??

thanx

Echoxx

Hi Echo,

This is the only inhaler I use, specifically designed for use by COPDers rather than asthma sufferers. It only has to be taken once a day as the effects last 24 hours (so try and take it at about the same time each day) and has very few side effects (I have not had any but can apparently cause dry throat so rinse out mouth after use). Hope you are keeping well?

Jacee

xx

Hi Echo, a little more info now I am properly awake! I have read a lot about inhalers (on trusted sites, run by well founded organisations like the British Lung Foundation and its American equivalent) and found that, like me, most people with emphysema often do not respond well to specific asthma treatments like the Beta2 agonists, eg Ventolin.  It is suggested in several articles that an anticholinegic called Tiotropium or Spiriva is more suitable for shortage of breath caused by COPD.  The advantages of this drug are that it works better, lasts longer, and may have an impact on flare ups (exacerbations). The extra plus appears to be that although it is slow acting (it takes 30 minutes to work) it has virtually no side effects. 

Jacee

xx :wink:

thanx for that hopefully it will help alot as am finding my sob getting worse (school run is up hill) and find i'm quite often out of breath and can't finish sentence, am waiting for referal to specialist just to be sure it's not anything more sinister forever the optimist eh!!

my husband says i am talking differently not sure what he means, has anyone else had comments like that?

How's the exercise going Van, i'm trying to cut down have lost a few pounds which is good only 2.5 stone to go!!

Echo xx

Hi Echo, my family noticed I spoke differently, unconsciously trying to preserve enough breath to get to the end of my sentence. I tended to speak in short bursts with gulps for breath in between.

Sorry to hear the SOB is bad at the moment - mine too. Someone else told me their SOB is always worst in Spring but was not sure if this may be related to 1) having lived through the bad weather of winter (and possibly chest infections, colds, etc), 2) the pollutants related to pollen, etc. as the sap rises or 3) doing more as the weather gets warmer. Or maybe none of the above? I hope yours improves soon anyway as it cannot be easy with young children.

Two of my grandchildren stayed over last night (5 and 10 years) - I love them so much and adore having them but I am exhausted, just by all the extra talking if nothing else!

Jacee

xx smile

Hi Echo and Jacee,

I am a little confused: I went with all good intentions on Sat to get Spitiva, I have come out with the green topped one (clear ot grey coloured?). The doc said he doesn't want to put me on something as strong a Spiriva until I have tried taking this ome 4 puffs a day. If, after 4 weeks when I have a spriometery test booked, my breathing has not improved then he will prescribe Spririva ( I think!).

What I want to know now I have had time to think is - what is hte big deal if I get Spririva now? Is there a benefit to saving until the last minute? Confused and feeling thats another prescription charge down the drain! By the way, can we get free prescritptions for COPD related prescriptions?

Anyway, great weeekend and I hope everyone had a good one. Jacee, my Grandson is 6 and he loves to chat! Tired is not the word! He wants proper answers too :-) We have some great times though, can't beat them :love:

Hi Echo and Jacee,

I am a little confused: I went with all good intentions on Sat to get Spiriva, I have come out with the green topped one (clear ot grey coloured?). The doc said he doesn't want to put me on something as strong a Spiriva until I have tried taking this ome 4 puffs a day. If, after 4 weeks when I have a spriometery test booked, my breathing has not improved then he will prescribe Spririva ( I think!).

What I want to know now I have had time to think is - what is hte big deal if I get Spririva now? Is there a benefit to saving until the last minute? Confused and feeling thats another prescription charge down the drain! By the way, can we get free prescritptions for COPD related prescriptions?

Anyway, great weeekend and I hope everyone had a good one. Jacee, my Grandson is 6 and he loves to chat! Tired is not the word! He wants proper answers too :-) We have some great times though, can't beat them :love:

Sorry - I should have spell checked / checked my last post :oops:

Hi Flossie, I am not sure what you have been given (Cats and Dogs may know). I was not aware of Spiriva being particularly strong, though it is one dose instead of 4. However, it is more expensive than many of the others and so some GPs are reluctant to prescribe it on the NHS. Do you see a respiratory nurse or specialist consultant? I ask because they are the best people to know what is the best medication for you and can often advise a GP.

Free prescriptions? No, not till you reach 60 (or are on certain benefits or have certain conditions - e.g. sexually transmitted diseases but not COPD!!). But if you are getting regular prescriptions check out if you would save money in buying a pre-payment certificate (PPC), which is what I do now. At £7.20 for a prescription, it is cheaper to pay £28.25 for a PPC (costs less than 4 items and lasts 3 months so if you are getting more than one prescription per month you save money) or you can splash out on a 12-month PPC for £104 (which you can pay in instalments) and save even more. Check it out and buy it on nhs prescription website.

Jacee

xx

Hi Flossie,

I may be wrong but i think you may have what i have just been taking which is Atrovent,(green mouth cover, white mouth piece and clear tube) i was put on it for a 3 week trial and i was told to take it 4x daily and if it did work for me they would prescribe a long acting one which i would only have to use once daily, i told her (resp nurse) that it didn't seem to make much difference so then got prescription for spiriva which i am yet to try.

from what the resp nurse said there is a medicine protocol they follow, mine was blue inhaler(salbutomol) green/white inhaler(atrovent) and then spiriva

i will try and give feedback once i've tried it.

]Hi Flossie,

I may be wrong but i think you may have what i have just been taking which is Atrovent,(green mouth cover, white mouth piece and clear tube) i was put on it for a 3 week trial and i was told to take it 4x daily and if it did work for me they would prescribe a long acting one which i would only have to use once daily, i told her (resp nurse) that it didn't seem to make much difference so then got prescription for spiriva which i am yet to try.

from what the resp nurse said there is a medicine protocol they follow, mine was blue inhaler(salbutomol) green/white inhaler(atrovent) and then spiriva

i will try and give feedback once i've tried it.

Echo xx

forgot to type my name doh!!

Hi All, its a blast from the past again. In response to Echos query re: Spiriva I have been on it for quite some time along with inhalers VEntolin and Atrovent. I also have Ventolin and atrovent in a nebuliser up to 4 times a day. I can't honestly say that any of them work. Sometimes my breathing gets easier and other times I am no better. If I forget to take Spiriva I don't feel any different. On Sunday and Monday I was rough then yesterday - Tuesday - I felt better and had a little more energy. Today no good again although I have'nt done anything different. Its not only my bresathing that is affected, my legs don't want to work (peripheal vascular disease). I also find that I am 'shaky' and yes my voice has changed, its deeper, particularly first thing. All I can say is experiment with medications until you find the one .that works for you. I hope u have an understanding and helpful doctor.I am also currently taking 25mg. of Prednisolone daily. I shake,rattle but I can.t roll.

Hi all,

Like Carole I do not notice any particular difference if I miss a dose of Spiriva. However, if I miss a couple of days I DO begin to see a difference and feel better soon after using it. It does seem to have a cumulative effect and I am told it works best if taken regularly, at about the same time each day.

Carole, the Ventolin also made me shake, the pills make me rattle and guess what? I have now put on enough weight to roll as well!! :blush:

Jacee

xx

Hey all,

Shake rattle and roll :lol:

Not sure if I see a respiratory nurse or specialist consultant - I did have a yearly breathing assesment with a nurse. I am booked in for a couple of weeks to see the nurse to assess how this inhalor is going; so far, not a lot of difference (well maybe a tiny bit but I may be imagining that!) I will ask about the respiratory nurse then.

I am starting to get a little bit paranoid with my doctors, I think all the decisions are based on money first, my health later! I obviously don't want to tell my doctor that - goodness knows what I would be prescibed next!

Van - hope you have sorted out your flooding problems?

Jaycee - did you get the job you went for?

Hope this finds everyone well and ready for our fantastic summer 8)

Jacee not Jaycee (sorry!) :oops:

Hi Flossie,

Thanks for asking - I WAS offered the job but did not take it as, when I found out exactly what it entailed, I realised I would be bored.

If you are seeing a nurse at the surgery to review your meds she is unlikely to be a respiratory specialist. I understand your caution but this is your health Flossie. You can ask to be referred to the Respiratory clinic at your local hospital - don't forget, anyone can ask for a second opinion.

People keep mentioning the Summer but it has yet to arrive in Yorkshire, though yesterday was a little warmer. Can't wait for some sun! I am unable to go on holiday at the moment and I am suffering withdrawal symptoms.

Jacee :wink:

xx

Hi everyone

I was reading your experiences with spiriva and was quite shocked that some GPs wont prescribe this cause it's too expensive. sad

I know how expensive it is as I thought I was going to be stuck in Spain with the volcanic ash. I only had two days left of spiriva and it looked like we were going to have to stay there for another 7 days. Went to the chemist and they requested €53 which equated to £49 at the exchange rate of that time. I won't be caught short again and will always take extra medication with me wherever I go. :oops:

I am not too good at the moment and have been taking extra Ventolin but I am always like this in May. I'm sure it has something to do with the pollin.

Lizzie53

Hi Flossie and all,

Spiriva is the more recently developed long acting version of Atrovent. It has few to no side effects. Interestingly although you take it once every 24 hours, it works for 32 hours. You experience no symptoms of having taken too much during those hours where the two overlap and there is no breakthrough SOB when the medication is wearing off as it doesn't have a chance to wear off.

The only negative thing about Spiriva is that it doesn't work for everyone, it either works wonders or doesn't work at all, but for the majority of patients - it works wonders. (the forgoing info is taken from one of my COPD books - I am not a chemist!)

Also -from another book - Anticholingerics (Spiriva / Atrovent) have few side effects. The most common is dry mouth - so just drink water after taking your medication - and also dry cough. More seriously it can worsen pre existing glaucoma and cause difficulties for men with prostate problems.

Luv Van xx

More Meds Info; The reasons why moderate / severe COPD patients take more than one kind of bronchodilator/meds

1) Anticholingerics (eg Spiriva) work on your LARGER AIRWAYS to prevent their muscles from tightening.

2) Beta-agonists (eg salbutomol /albuterol//serevent) These work on the muscles surrounding your SMALLER AIRWAYS, preventing them from tightening.

3) Combination drugs (eg Symbicort) These combine a long acting beta-agonist like serevent with a very low dose of steroid. It therefore opens up the small airways and treats / prevents inflammation of the airways. Inhaled steroid solves a lot of the problems that Prednisone caused. As they coat the inside of your lungs to bring the swelling down from the outside in, the steroid itself does not have to get into your bloodstream to work and so there are fewer side effects than with Prednisone. However when first using them it may take several weeks for

it to take effect as the micro amount of steroid used has to gradually build up in your lungs.

-------------------------------------------------

The above are the most common types of 'maintenance medication' in use.

For those whose FEV1 is less than 50% ie moderate/severe patients, 'Triple Therapy' is the standard treatment - ie Spiriva + Symbicort + ventolin. This is recommended by NICE and by the international 'GOLD' standard.The reason for this is pretty clear - both small and large airways are being treated and inflammation is kept at bay by micro dose steroid.

This may change as new treatments appear, eg the new Daxas drug that is currently being approved for use in the UK.

Remember that we are all individual and may find that certain drugs do not suit us. Also note that you may only be offered Symbicort (or same med but other brand name) If you have had more than 2 exacerbations requiring prednisone treatment in one year. I do hope this may clear up the 'why's and wherefore's' of the various inhalers for you.

Thats all for now Folks, going to get my toast now! Love Van xx :wink:

Hi Lizzie 53, thanks for the info and I shall certainly take plenty of meds with me when I go - I have never really allowed for real delays (optimistic or stupid) and have only ever taken 1 extra days supply.

Hi Vanessalee, good to see you back and thanks for the detailed info.

1 point - if you do get dry mouth/throat with Spiriva it is better to gargle/rinse and spit out than to drink and swallow.

Jacee

xx