Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

0 Online

Marijuana oil

Hi All! New to the group, I was diagnosed with AKPKD about a year back, my kidney function is pretty normal currently. Hoping to keep it that way for as long as possible! I met with a new doctor today who wants me to start BP medication even though my bp is in the normal range. He also adviced me to start Tolvaptan, I'm a little reluctant since it's still in trial. Just wondering if anyone is doing it and also if anyone has tried marijuana oil to slow down the process. Thanks for sharing! 

Replies

Chewitt
Chewitt

Hi najia, welcome to the group. Tolvaptan has been licensed in England for those with PKD stage 2-3 with rapidly declining function. These are not the best criteria in my opinion, but who am I to say?! As you say, the aim is to maintain good function, so why wait until it's rapidly declining. These criteria reflect the testing and demonstrated effectiveness, however. The drug has not been tested in those at stage 4+, and that's probably rather too late anyway. It is also untested in those aged 50 and over. There are side effects, but if you tolerate them and it gives you several years more with good kidney function, I think it's worth a go. I decided against it because I am at stage 4 now and would probably gain only a few months grace before needing renal replacement therapy. I'm also nearly 50 and already have a difficult time with frequent urination, which Tolvaptan is known to cause. You have to drink a lot, which I'm not sure I could manage. Thus is crucial, as you become very dehydrated if you don't drink enough. For me, it's about quality of life now as much as anything else.

With blood pressure, many doctors, but not all, tend to want to keep our blood pressure a little lower than the generally accepted norm. What is your BP?

As for marijuana oil, I'm afraid I know nothing about it.
lovemyfive
lovemyfive

Interesting! I'm in Canada. I had this discussion with my nephrologist yesterday. I'm still stage one and my kidneys are very large. Why eGFR is about 112. As far as Tolvaptan goes she doesn't think the side effects would outweigh the benefits for me. She also mentioned the blood pressure medication study. My blood pressure is great so she did not recommend starting me on blood pressure medication... it's confusing isn't it? I haven't heard anything about marijuana oil.
kagancher
kagancher

I have not heard of marijuana being used to slow the progression of PKD, but it is definitely recommended to treat PKD related pain
Posts You May Be Interested In:
  • PKDIL

    Blood pressure meds?

    1
    Hi all,I wrote here about 6 months ago...i was very anxious and scared , diagnosed with pkd accidently (no symptoms)... my father was a very complicated case , died 2 years ago in 3rd transplant surgery(!). He had very big kidneys and very high blood pressure from young age.I feel better now mentally and Im optimistic.I'm 28.5 recently did an mri , my right kidney looks better than the left...
  • VerySad

    Lisinipril and PKD

    2
    My son (29 years old) was diagnosed with PKD about 9 months ago.  His kidney function is fine.  His blood pressure is about 130/80.  His doctor is recommending Lisinipril to control blood pressure and help with cysts.  He is not experiencing any negative affects from PKD at this point.My husband is 67 and found out 9 months ago that he too has PKD.  His kidney function is fine.  He takes...