Breathlessness with ADPKD and Ramapril?

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Joined: Mon Mar 30, 2020 2:29 pm

Breathlessness with ADPKD and Ramapril?

Post by scottj15 »


I am 28 and around 10 or so years ago was diagnosed with ADPKD. My mother had a very successful transplant over 15 years ago.

I was started on a low dose of Ramapril when I was first diagnosed which has increased gradually over time, increasing to 10mg on my previous visit to the consultant last May. I see him yearly and I am due another appointment however with everything that is going on at present I am aware this will be delayed.

My eGFR is still very good. The previous 4 years have been 100, 90, 88, 99. I had a scan a couple years ago just to see how things were looking and while my consultant was contemplating trying me on Tolvaptan. The results were (and I quote from the letter) "your kidneys are quite large now but don't meet the size we are using currently to trigger treatment with Tolvaptan".

To the present day...For the past 6 months or so, on and off I have been experiencing a kind of breathlessness where it feels like I cannot reach the peak of my breath. It is as if I cannot reach the top of the breath and it seems to have been getting worse the past few weeks/months. My breathing seems very shallow and I it often causes me to yawn alot to "get air". I am going to discuss with my consultant when the appointment does come through and possibly my GP before then although I know they are under a lot of pressure at this exact time. Therefore I wondered if anyone has had a similar experience?

Of course it could be something entirely unrelated to my kidneys however it is always the first thing I go to. I wondered if perhaps they are getting "Quite large" if the size was impacting my breathing? Or if perhaps my increase in dosage of Ramapril last May has had an effect.

Really just after anything advice anyone may have.

Thank you in advance,

Kind regards and all the best.

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Joined: Thu May 23, 2013 2:49 pm

Re: Breathlessness with ADPKD and Ramapril?

Post by wagolynn »

Ramapril - look at the leaflet packed with the drugs to see if breathing difficulties are one of the side effects.

If it is a while before your next appointment, ring your GP and explain why you want an appointment.

Are you retaining water, do the dimple test on your shins to see if you are, if so work your way up your leg to see how much but talk to your GP is the most important.
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