PKD Charity for Autosomal Dominant PKD
627 members135 posts

Starting Tolvaptan...........

Right told today i need to get started on Tolvaptan. Got the script and now have the drugs.

I was told to start it this weekend so i can gt use to the side effects prior to going back to work on Monday.

If im honest im scared.

Can anyone tell me what it was like for them that first time they started it?

Thanks,

A

7 Replies
oldestnewest

I started Tolvaptan 10 yrs ago as part of the clinical trial. Most notable side effects are thirst and passing urine more frequently and that does mean at night. You do though learn to cope with it. One of the most amazing things was that within 2 weeks I felt so much better. My swollen stomach had started to reduce in size. As PKD is a chronic disease you get used to feeling unwell without realising how bad that is, Tolvaptan made me feel so much better, I am so pleased that this is now available widely

1 like
Reply

Hey Anaj

Thank you for replying and I must say that your comments have given me much comfort.

Can I ask, do once you had got use to it you continued you life as normal?

Kind regards

A

Reply

Yes I have continued my life as normal. I can tell you as part of the trial I am asked if I would be happy to take Tolvaptan for the rest of my life and my answer had always been yes. Make sure you always have a drink nearby to deal with the thirst which is going to be more noticeable at the beginning. I am sure you will be fine and you will soon feel the benefit of it

Reply

Hello, there are a lot of people on our UK Facebook group who are taking tolvaptan.

facebook.com/groups/pkdchar...

They will be happy to share their experiences.

1 like
Reply

I'm not sure I feel comfortable talking about this on Facebook yet.

I'll have a look at the Fb group though.

Kind regards

A

Reply

It’s a closed group, so only the people in the group can see your posts, not your Facebook friends and family.

I’ve been on it 10 months and doing really well, you have to make sure you drink plenty, in a 24 hour period I drink upto about 6 litres, this in turn does mean you pee a lot, I have just had a week off because of flu, that is the one thing I noticed but I was also dehydrated.

I have always felt better on tolvaptan, even thought to start it took a lot to get my head around, but you get used to the negative impact it has, which is worth every ouche I drink.

My kidney function has recovered from a GRF of 35 to 40 and has remained steady for 8 months, I still have problems but I have a chronic illness, but I feel better on tolvaptan and make me feel like I’m fighting the disease.

Hope this helps, good luck

Jan

1 like
Reply

Jan

Yes that helped a lot. Thank you so much for that. I actually start it tomorrow morning . All the comments and information on her has me approaching this informed with tips I would never have known unless I had put it out there on here

I will John n the Facebook page too.

Kind regards

Angela

Reply

You may also like...