Is anyone with CMT taking Tiotropium ... - Charcot-Marie-Too...

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Is anyone with CMT taking Tiotropium for COPD?

Whiterose profile image
4 Replies

I am not sure about this medication and I have noted,it's not got good reports. Will discuss with my health provider, but thought I would ask the question here.

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Whiterose
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John1945 profile image
John1945

Hello White rose ....

Tiotropium belongs to the group of medicines known as antimuscarinic bronchodilators and can be used to treat the symptoms of chronic obstructive pulmonary disease (often referred to as COPD). With COPD the airflow to the lungs is restricted and this causes symptoms such as cough and breathlessness. Bronchodilator inhalers such as tiotropium are used to ease these symptoms.

Tiotropium works by opening up the air passages in your lungs so that air can flow into your lungs more freely. By doing this, it helps to relieve symptoms such as coughing, wheezing and shortness of breath. It is long-acting, which means that its effects last for 24 hours, so you only need to use it once each day. Tiotropium inhaler devices are green-coloured.

You did not say, but If you smoke you will have to stop ? I personally do not think that their is a "link" with Cmt Type 1a ? However, I hope that any community members of Health Unlocked with the suffering with the same illness, will respond to our request!

Best of luck .... John (Glasgow)

Whiterose profile image
Whiterose in reply to John1945

Hi John, thanks for answering my question. Firstly I haven't smoked for 30 years! I am not too happy taking this medication, as it has poor reports.. My cramp like symptoms linked to CMT have increased since taking inhalers for COPD. It could coincidental, but am not sure. Terese.

lilybet profile image
lilybet

Hi Whiterose,

I'm also on inhalers for asthma. All I know is that when I was on Symbicort, also a long-acting COPD/Asthma inhaler, it gave me cramps. I've never taken tiotropium but my husband does for his COPD - and he doesn't have CMT - but he gets cramps from the Symbicort inhaler. So it is possible for meds to give people cramps whether have CMT or not.

I take Atrovent (ipatroprium bromide) which deals with the wheeze, coughing, mucus - in a similar way to tiotropium. But it's weaker than tiotropium. There is another inhaler stronger than Atrovent because my Nan used to take it but can't remember the name.

For the preventer - I've changed to Seretide - it's a lesser quality inhaler but it doesn't give me cramps or angina-style symptoms.

Might be a good idea to have a chat with your doctor to review your meds. because different ones suit different people.

Hope this helps.

Whiterose profile image
Whiterose in reply to lilybet

Hi Lilybet, thanks for answering my message. I do use Seretide as a preventer too, but since using inhalers generally I appear to suffer terribly from cramps. Indeed I intend seeing the specialist Nurse re my meds. Kind regards. Terese

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