It’s Been A While: Hello my warriors... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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It’s Been A While

PaigeyPaigeForLife profile image
PaigeyPaigeForLife

Hello my warriors, its been a while since I’ve been on here, My Jynarque journey continues and i am doing well. I have i am now on a higher dose of the meds, new dose is 60mg and 30mg and still drinking a lot of water.

I had also mention on here that i suffer with fatigue, it has not gotten better and the doctors have not been able to really diagnose me, i spend most of my days in bed and that sucks! Moving around does not help its slows me down a lot.

This past Tuesday i had labs done to check my iron, the results came back normal. I have more labs in the next two weeks to check my liver as i am on jynarque and my pcp has added inflammatory test for me as well, in the mean while i do what i can and staying in bed which is best for me.

Take care my warriors, until next time.

4 Replies

Hi Paigey!

Nice to here that you are doing well.

Keep drinking water atleast 4.5 Litres a day.

Hey Paigey,

Is Jynarque helping you. How are you progressing?

I am on the lower dose now and wanted to know if it is worth.

Sorry for the late reply, I am now on 60mg 30mg combination and having I problems at all. I also notice my Er visits are now zero since taking Jynarque. For me its definitely worth it, we will never know if we don't try. All the best on your journey

I struggle with fatigue from PKD, enough to severely limit what I do. So obviously I have no answer for it to tell you, but I do suggest you keep on pushing your GP for more tests. There are so many possible causes.

I do try to take some exercise every day. For me, walking makes sense. I don't care about my ability to do planks or whatever, but I do care about my ability to walk.

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