Is there any new cure or remedies out there ?

Hi, Im 46 years old and i got PKD and as we know its a genetic condition but recently my GP has revealed i have cysts growing on my liver and my right kidney has got the bigger cysts growing. Just wondering if there is any new treatments on the horizons?

Thanks Karen

14 Replies

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  • You need to ask your doctor.

  • Seen my doctor couple of times now and yeah says the same thing☺ just to keep healthy. .

  • Hi poko 21, As I understand it there is no cure as such the only thing that can be done is slow the progression as much as possible by keeping blood pressure under control and living as healthy life style as possible. I have pkd with cysts on my liver also which have never caused a problem as of yet although I have had a transplant last year as my kidneys failed almost completely at age of 47. Good luck for the future.

  • Thankyou very much n like wise hope you are keeping well..

  • Hi Karen

    I have PKD with both cysts on kidneys and liver I am 58 and still managing to hold on to stage 3b. There is no cure but if you are in stage 2 or 3 failure you could ask about Tolvaptan this slows the growth of cysts.

    NICE have this to say about Tolvaptan:- What does this mean for me?

    If you have rapidly progressing autosomal dominant polycystic kidney disease with chronic kidney disease stage 2 or 3 at the start of treatment, and your doctor thinks that tolvaptan is the right treatment, you should be able to have the treatment on the NHS.

    Otherwise follow the advice given by stonebroke. Also avoid any anti- inflammatory drugs such as Ibuprofen, Nurofen, Diclofenac. They are kidney killers!! Also avoid any cold remedies with Phenylephrine hydrochloride, or epinephrine as they raise the blood pressure.

    Just eat as clean as you can, be careful with meat stick to a 4 oz portion. I try to have 2 meat free days a week to rest my kidneys. Drink lots be it water , juice, tea. avoid coffee, coke a cola and any drinks containing caffeine.

    Hope this helps

    Best wishes Christine x

  • Thank you Christine...

    Will be seeing my doctor tomorrow so will definitely ask about Tolvaptan for sure. And hope you are keeping well all the best

    Regards

  • Hi Christine, I live in Australia, here we get diagnosed but not told much by doctors. I've had to do a lot of learning the best way i can and there are lots of unexplained symptoms that can be related to kidney disease and those that are not. This makes it hard. But because you may be unwell with APKD other issues can catch up on you as well and need to be sorted out. This should not be put off or deterred as it is very important to get help for all that is wrong..

    I try to stay healthy and get treatment but I have realised that I had to change. With APKD I lost contact with who I was and who I knew, let alone what I used to do everyday. I have taken an interest in what I can do in my own home such as watch TV, reading magazines and my caring for my pot plants. I do some things when I can and stop putting my old expectations on my self.

    My life was extremely busy with a family of four children, (two are now grown and married) a husband who took it easy when he came home from work. So while I did everything at home, worked two jobs, did most things my life was happy and I did not mind doing all for everyone.

    Eventually I ended slowing down I was suffering with high blood that was causing head pain, headaches, back pain and pressure, pain in my sides, (stomach pain, fever caused UTI's) that got worse over many years. I was accused of putting it on by many which hurt and bewildered me. This was until I ended up with exhaustion, chronic pain and headache pressure that bought me to a standstill in 2012. I sought help for all of this since then and have barely worked since.

    I've had a tough time in finding out what was wrong. I have had to change many doctors and specialists and make my family understand. I spent years searching about my symptoms in books at the chemist, online asking questions people I thought may know and this I could only do when I had time AKPD disease is not well known here or spoken of I was asked if I had kidney disease from being drinker which is what people generally think causes kidney disease here. There was no information handouts or information given about APKD and LPKD even being a disease.

    I had to learn not to be frighted about what was happening to me by being persistent with doctors in seeking diagnosis and causes for symptoms and finding information myself.

    My story is that...

    Slowly I could not wear jeans or anything with a fitted waist so I bought elastic waisted clothes. I gained weight. Looked tired, worn out and my memory, sense of time and comprehension felt like it had disappeared and was replaced with headaches and dizziness . My eyes went black in the corners, I looked hungover and make up does not do what it once did. People noticed at work and when i was out, commenting on how I had let myself go. Over the years my body changed my abdomen developed as I severe swelling and a lot of pain in the back, sides and abdominal area, legs and face until I looked heavily pregnant. I have since learned that some of these symptoms related to the disease and other issues. I went from feeling fit and well to knowing my symptoms were getting worse. My lifestyle changed everything became different and I could not be who I was anymore or do what I wanted or used to do such as study and live a normal life with recreational activities and work. I did not know anymore what I wanted to do I felt lost. I had a hysterectomy thinking it was that. I used to walk 7 k's every few days always exercised this stopped as I felt, pain sick exhausted and dizzy.

    I did eventually get diagnosed with APKD and was prescribed BP med's. I then continually reacted very badly to side affects from all prescribed BP med's until lately. I was usually told by my then GP and specialist to go home and stop asking questions as they would not change the med's for me.

    This was basically the reason behind my decision to change doctors whenever they would not listen. I can say that investigating my symptoms amongst a number of doctors and being persistent has really paid off. I now have diagnosis on most of my symptoms from being referred to specialists. I am feeling much better knowing what it is that is wrong. Tests by new doctors gave me reasons to understand that my symptoms were not in my head, they were real.

    Test revealed I have very bad various veins in my legs adding to pain and swelling in my feet legs and groin area.

    I also spinal damage causing more pain in my back. (This was due to falling over many times and down flights of stairs over the past few years and recently with the swelling in my legs, feet and ankles). The vein surgeon has mentioned I may also have lynphodemia (which adds to the swelling in my legs, feet, neck, face, arms and hands reasons why I look and feel so worn out and exhausted). This he says may not be fixed by vein surgery but at least I feel ok knowing what it is. I'm more careful with stairs and sit down if I feel I can't balance due to swelling. I ask for help with lifting heavy things like washing baskets, shopping and what I feel I should not lift.

    Im 51 and my kidneys are working well but growing larger with the cysts. I have not been told what stage I'm at but my liver is 20 cm so very large, my kidneys are about 14 cm which I guess is not so bad. I know they could be worse. Research on line has revealed to me that some causes for the lymphodemia can be due blockages internally from an enlarged liver. I mentioned this to my specialist and GP as a cause for swelling . These are at this time (my thoughts) the doctors did not commented to me about my questions on this but sent me for new blood and urine tests instead. I guess I will find out about this soon.

    My new specialist had changed my blood pressure med's immediately and this was wonderful as the swelling in the stomach reduced. The old BP med's made me very sick and I'm so grateful to have new med's. I can not believe that I feel so wonderful now rid of the pressure, fog, nausea and pain that the other previous med's caused.

    However I'm still tired and dizzy and have trouble concentrating and and my memory is way off so my previous studies and working I feel are not doable. My blood pressure also is not settled as it did not stay down. Within three months it became extremely high so the doctors and specialist doubled it and put me on an additional BP med that is heart and kidney protectant. This was later also doubled. Last week my blood pressure got back up there again is just as high as last time my heart and kidney protant BP med's were changed and I think need to be reviewed again.

    The only downside of the new BP med's is that I don't sleep much I am awake at night so have sleeping tablets were given to me and they worked for a month but don't now. I'm not sure why this is. I am awake most nights so I feel the pain that sleep gave me a rest from and I cannot get comfortable. I get up and watch TV or I lay awake turning.

    I have for the last two years sharp painful and sudden unexplained cramps in legs hands, wrists, feet and knees most days and nights of which now one comments on when I mention it. When I drive or am doing something I have to stop. I have sharp and ongoing pain under my ribs, sides and back. With all above I don't feel I can work as I can not focus and have too much pain. And yet my kidney function has always been ok. which I feel good about but its controversial I feel to what I am going through because according to doctors I should not be so bad off as I am

    Good news is I have got diagnosis on the swelling and can have surgery for my veins in my legs and surgery also to relieve pain in my back (which Is unrelated to my kidneys ) but adds to a lot of discomfort with trying to get comfortable day and night and I don't sleep. Basically I cannot lift or do many of the activities I enjoyed in the past or work unless it can be fixed with surgery but I would not have this if not for swelling and dizziness from the disease and med's

    According to doctors, numerous specialists and general public opinion I should be working with all the above going on and have not stopped getting on with life. I have not been able to. My life that I had before stopped in its tracks. I'm supposed to be ok to work, get on with enjoying life but I don't work so am limited in what I can do that I used to recreationally. I wish that APKD symptoms would be realised. I have been made feel very bad by some for not working whilst being sick and for thinking I was sick even.

    They forget or don't know that I loved my life and looking after my family I loved working. I would like to turn back the clock and get on with it, feel like I did. Now I want to know what can I do and look forward to as i'm able to do it.

    The basis of my story above is to say that Im am very grateful and glad at least to know causes for my symptoms. I'm so pleased to have treatment for these issues and at least know what is wrong. My point is that its not always easy to find out about disease, illness and get treatment. So far it has been exhausting and taken a lot of persistence and patience but if you don't make a point of finding out and doing something about your illness, no one else can help you. From my experience it pays to check everything out and keep trying till you can get the treatment that you need (and this goes for anything that you feel is wrong with you).

    Hope this help readers to try and find listening doctors who can treat symptoms and illness

  • I have PKD my kidneys grew so large ( 5 kilos each) that they have both been removed I also have cysts on my liver and overies

  • Hope you're doing well...

  • Hello, I am Stella. My husband is 45 and is diagnosed with PKD. He found out about this condition after hospitalized for a brain hematoma caused by car accident. He has to deal both with right arm hemiparesis due to the hematoma and PKD too. We try to find a way to privent further damage to his kidneys. The car accident caused rupture of some cysts and had to do 4 times dialysis to save the function of his kidneys. But we couldnt regain normal function again. He has chronic renal failure stage 4 now. I feel so bad for him. We are looking forward to find any treatment for the cysts. If there is any we are ready to try it

  • Hello stella, sorry to hear about your husband's accident, thinking of you in our prayers and hope he gets better soon.

    I feel your pain n i have the same hope that one day they find a cure for pkd...

    God bless

  • Up until this year in UK the only treatments were aimed at the symptoms and keeping blood pressure down. However TOLVAPTAN was approved by NICE over the winter for use in ADPKD. The guidelines are fairly narrow - stage 2-3 CKD and showing evidence of rapid progression. Both can be assessed by looking at your eGFR measurements over the last year - should be above 30 (some suggest above 45) and shown a drop by 5 or more in the last 12 months (can take an average for the last five years if don't have two in last year). I wrote a post on my blog about this (roughlykidneyshaped) if you want more information.

    Best wishes

    Katie

  • Thanks katie, im interested in this Tolvaptan have to ask my doctor.

    Cheers karen

  • I am 46 too. With ADPKD too. Stage 4 unfortunatelly there is no treatment in my case. I feel so disappointed. I found out late

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