anticholinergics

I have had trouble with Spiriva and my eyesight. On top of it I've just read an article in the Guardian about anticholinergics such as Spiriva 50% of patients get dementia..Breathing has got a price!!

[Gino39]

Hi there, another layer for you to have to deal with! I'm sorry I can't add any advice or alternatives to this one;0() it doesn't seem a good percentage risk to me. You do so well, you will be an expert on all aspects of this by the time you have finished! I hope at least it's sunny with you? We have had a glorious Spring day today, and I spent it out in the garden. You have to make the most of sunny days here! Hope that you find a better solution to this latest issue. Take care...

Gino x

[Hidden in reply to Gino39]

Thanks Gino, yes it was sunny here too ☀️☀️with a fresh wind💨💨 in the morning so I went for a walk. I have gym at the hospital two afternoons a week it was quite hot when I finished!

Oh I was quite happy with the nebs but the doc said it was old fashioned blablabla😃 well there you are, if it aint broke don't fix it I say, now I gave the pulmyboy back to the chemist's and I have an inhaler with 90 capsules I can't use! I phoned he said stop for 48 or 72 hours and let me know because ventolin  doesn't act on LAM issues just bronchia he said..so will see what else is in fashion 😜 Take care Gino and thanks for the chat! 🌷🌷

[Nimueh]

Yes unfortunately anticholinergics can affect eyesight and as Spireva is long acting you're stuck with that for the 2 days or so that your doctor suggested. Your doctor is correct that Ventolin works on different receptors to the anticholinergics. It's a bit unusual for the spiriva inhaler to cause it, not that that helps you much. Nebulised anticholinergics (ipratropium a short acting anticholinergic) can cause issues but that's normally because it's leaking out of a poorly fitting face mask into the eyes. There are others long acting ancicholinergics your doctor could try to see if you get less side effects but they are only listen end for COPD rather than asthma so they're less likely prescribe them and they may well cause the same issue anyway.

Regarding the Guardian article, don't be fooled into thinking that correlation means cause. Yes there appears to be a link with dementia if 50% of Spiriva patients get it but that does not means the Spiriva caused it. My guess, and this is pure speculation especially as I haven't read the article I question, is that since most Spiriva patients are on it because of COPD and most COPD cases are caused by smoking that the real cause is more likely to be one of the hundreds of toxins that a smoker inhales with each drag on a cigarette. 

[Hidden in reply to Nimueh]

Hi Nimueh

I wanted to ask your opinion because you seem to know a lot about all this.. First I haven't only got asthma I have recently been diagnosed with Lymphangioleiomyomatosis or LAM for short just Pulmonary luckily that's why I' m on Spiriva. Now I saw the specialist yesterday he wants me to try again! when I'm ready. He thinks my eye problems may be primary Sorgren.. Well Im back on pred but he doesnt like me on pred because of the bone and skin problems it gives me still it's the only thing that helps me to breathe presently. I'm seeing the European LAM specialist on 3rd June so I will know more. So there you are you have the whole picture. I loved the nebs I didn't use the mask I had a mixture of budesonide and atrovent and I was feeling great! I always say if it ain't broke don't fix it but selling new pharmacology takes over I think..Anyway thanks for your time xx

[Nimueh in reply to Hidden]

I'll be honest, I've no experience with LAM treatment. The only information I can find is about slowing the progression of the disease but not much about treating it's symptoms. 

I think the main reason for wanting to change you from the ipratropium nebs to the Spiriva in healer is that it's a lot easier on you, presumably you had nebs 4 times a day the average neb time is around 10 mins so that would be 40 mins of your day gone so it you could replace that with an inhaler once a day it ha would be great. If you didn't have any eye problems with the nebulised ipratropium it does make me think the eye problems may not have been down to the Spiriva. If Spiriva is the cause I would have expected you to have a lot of problems with the nebs, that said some people do react to drugs in unexpected ways. If it does turn out to be the Spiriva it may be worth trying one of the other long acting anticholinergics. How long did it take for the eye symptoms to settle? Have you had any problems before or since?

I'm not sure why they've taken you off the nebulised videos idea if it was working and as you say you now need pred to be able to function. At high doses you can get systemic side effects from inhaled steroids but these are still less than when you have oral pred. Doctors don't much like prescribing nebs of any kind which may explain why they were so eager to change things but I can't help but agree if it ain't broke don't fix it.

Hopefully the LAM specialist will have some answers for you and will get you on the correct treatment.

[Hidden in reply to Nimueh]

Thank you Nimueh. You have been most helpful. The eye problem may be Sjorgren disease..but I have 2 types of celluvisc gel and drops to put up to 20 times a day as a result of going to the ophthalmologist.. I had no tears at all. So he knew I had a weakness as he sent me there.

I tried spiriva again and stopped for good..also definitely gives me retention. And the gp told me it's a well known side effect.

Tomorrow I go to the clinic and I'll tell him that's that. I did stress that inhaled steroids are better than oral ones and he agrees of course.. I just have to wait for the 3rd June for the Professor to see me. In the meantime I will rehire the pulmyboy. I have 3 boxes left of atrovent and budesonide which I was mixing.  No just 2 to 3 times a day, and it was helpful. The atrovent was not as powerful as the spiriva probably but I protected my eyes.

Those meds they developed are for very severe stages, I am lucky I have just sporadic LAM just pulmonary my problem is dyspnea really.

Thanks again.

[Nimueh in reply to Hidden]

I really need to start proof reading when I'm using my phone, autocorrect does not understand drug names or medical terms. 

If you do put yourself back on the nebs be sure to contact your consultant and let them know that's what you are doing. 

Do you definitely have sjogrens? Dry eye is also a side effect of anticholinergics, and if ipratropium has contributed to dry eye the reaction to Spiriva fits better (because the nebulised ipratropium is more likely to cause eye side effects it's odd that it doesn't cause any but the Spiriva does even though it is a known side effect). I have dry eyes too but I'm on a lot of medications that have that as a side effect. Mine must be a much milder case as I just use hycosan ultra drops when required and I'm still able to wear my contact lenses. My biggest problem is dry mouth, it gets so bad everything gets stuck together making it difficult to speak.

It's a shame the Spiriva is unsuitable for you as it would have saved you some time and the cost of renting the pulmyboy. I have Ventolin nebs for exacerbations to keep me away from hospital ant the time it takes to finish a neb frustrates me at times. Still it's better than struggling and failing with an inhaler plus spacer then ending up in hospital. 

Incidentally when they stopped the steroid nebs did they put you on a steroid inhaler instead?

[Hidden in reply to Nimueh]

Hi Nimueh 

Who knows what is definite?? I had the test with the blotting paper inside my lower lid, another delight, he found no tear, not one he said. 

He said at least primary Sjorgren .. Apparently I would have to be tested for secondary..but since I stopped the spiriva my eyes are better. Although I was not putting that amount of celluvisc in my eyes before. It is a very good product. No you would be able to use the 0.4 with lenses it's so sticky. 

Yes I know what you mean but those nebs are not as concentrated. The water retention was making my life too difficult. So a lot of things.

Yes mouth is dry too but bearable I drink loads, use chewing gum or boiled sweets

Sure I will tell him this morning when I go. I'll handle le pulmiboy next week, Im going to Lyons for a long wkend so just cross fingers it all goes well if not I take my prednisolone with me anyway.

He told me to increase my seretide 250 to 3 times 2 puffs instead of twice a day  if needed that is the first point on my asthma action plan. When I go down from 320 to 260 or when I feel short of breath. So I take 2 puffs of ventolin wait a bit and my seretide. 

2nd point on plan from 230 or shorter of breath is 40mg of pred and call for instructions.

I haven't made over it 320 for a month on my peak flow , between 260 and 320.

We'll see what they say this morning. Keep well xx

[Hidden]

Thank you very much for the info, Nimueh

[Feathery]

Hi there, I've read some of your posts re having both LAM and Sjogrens. If you google both those names together you will find a lot of information about the relationship between the two diseases. Hope this helps.

Heather xx

[Hidden in reply to Feathery]

Thanks Heather I don't have Sjogren they have done a blood test eliminating that. So one less!!

I have adrenal glands insufficiency though..too many steroids in the past and more to come!

Take good care xx