Toplavan use

[ramolawithu29]

I'm 38year old pkd patient my nephrologist prescribed me toplavan for slowing down the progression of kidney cysts however I'm very scared as he said there are side effects involved. Kindly anyone with experience of using toplavan may please answer if it's worth taking

[bigkid]

I don't know what the specific side effects are for Tolvaptan (I assume that's what you mean?) but having lived with PKD for 60 years, experiencing all manner of issues and problems including kidney transplant, it seems to me that anything that might avoid the misery is worth the risk. PKD is potentially a very cruel and savage disease which doesn't only affect the kidneys, you need to take all available steps now to prevent this disease destroying your life. These comments may seem severe but what I say is very true and I am sure there is 50% of the PKD population that would agree with me. Give it a go and focus on the positives!!

[ramolawithu29 in reply to bigkid]

Thanks a ton for your valuable advice

[jajaja]

Tolvaptan has been approved for our use after careful consideration. You should be safe!

There was a large drop-out rate from the Tolvapatan trials. But much of this seems to have been about the way it made people very thirsty. Which meant they drank a lot of liquid (and were encouraged to, to prevent possible harm.) Which meant that they needed to go to the toilet very often. Which meant that their social life could be very restricted. With PKD, getting up in the night more than once to go to the toilet is an annoying feature for many of us. Getting up several times is not fun.

You would obviously be given a list of other possible side effects which you should report, and you will be monitored for the ones that creep up on you without you noticing. If you take it, you will be well looked after. And your experiences may help to keep our children and grandchildren safer.

[bunty_f]

I don't think you should worry about it at all. I have been on the Tolvaptan trial since 2007 and the only side effect that I experience is that I am more thirsty than I used to be and I pee more. But you really do get used to that.

It is the only treatment that really makes a difference to the progress of the disease so as soon as you can get on it do so.

[ramolawithu29 in reply to bunty_f]

Thanks very much for your help

[ramolawithu29]

I'm already having lots of problems in urination on a regular basis, sometimes it's too frequent ,& even little extra consumption of water makes me urinate frequently which causes anxiety. I don't know if it's due to stone in my kidneys or a symptom of apkd

[PKDC-Admin Partner]

Hello. Where are you living? Are you getting Tolvaptan on prescription or are you on a clinical trial?

Have you been told about the side effects? What is worrying you most?

[ramolawithu29 in reply to PKDC-Admin]

I've been prescribed toplavan by my nephrologist 2 doses a day however he also told me that it will have an effect of excessive urination but lm already suffering from urination problem so couldn't start toplavan usage

[ramolawithu29 in reply to ramolawithu29]

I'm living in delhi, India.

[____paru in reply to ramolawithu29]

can i get tolvaptan in India??

[PKDC-Admin Partner]

I didn't know the drug was licensed in India.

The main side effect is excessive thirst which means you will need to drink a lot of water and urinate a lot.

Many people learn to change their lifestyles so they can drink and urinate when required.

[dhillasam]

hi everyone . my quest to find people with pkd is helping me to come to terms . i am sam 35 .on july 13 ,2015 , 10days before my 35th birthday i was diagnosed pkd showing symptom of hypertension . i was told by nephrologist that iam in 3rd stage . i was shattered and from that day i have been searching in formation from all sides . i am married and i have 2 small kids .

life turned upside down for me . why me ? i cant blame my parents my genes or myself .

just looking for hope . wanna share and hear from other guys who are in my position

sam