Hi. I haven't been on for a while as I only have 'possible' MG rather than definite and I feel a bit of an imposter. I have immunosuppression for my lupus which helps with my weakness but I'm really struggling with my breathing - small airways disease/inflammation as I cannot cough well enough to clear my chest nor inhale strongly enough to get my inhaled meds where they need to be. My consultant is hinting at a trial of nebulised COPD meds followed by long term use if effective and I'm keen to hear if this has worked for anyone else here?

Many thanks, Clare

Hi Clareb,

I have different breathing problems, primarily due to muscle weakness. I do not have problems with smaller airways. If you are having that problem, there is a good chance that using inhalers or nebulizers could help.

If you cannot cough well enough to clear your airways, and that is your primary problem, there are assistive devices to help with that. You can ask your doctor about it. If you are aware that you are having trouble breathing, also, there are breathing devices which can assist. I have a BIPAP/AVAPS machine which I use a night, and it really helps. I was really struggling to breathe at night, and it was affecting my ability to sleep. I can also use it during the day when I am struggling to breathe. It is also called a non-invasive ventilator. It can really help.

Take care,
Erin

Clare, Those drugs will only work for things such as asthma, etc. Flovent, however, would make MG better. But, if you are already on a steroid (not sure which immuno you are on), mixing inhaled with tablets can make MG worse (temporarily).

Have you had an overnight oximetry? Have you been checked for sleep apnea? Have you been evaluated by a pulmonologist? Now that would be a very good idea. Just throwing more drugs at you isn't necessarily what you need.

Also, have you had an echocardiogram? Some people have pulmonary hypertension, which makes breathing in and out difficult. PLEASE have that checked for.

Since you have lupus, have they done any coagulation studies, such as APS?

Doctoring may be different in the UK, but diseases don't change from country to country! It sounds as though you need a thorough evaluation of why you aren't breathing well. That would include both a pulmonologist and cardiologist.

I hope you can figure this all out.

Annie