Pain relief and medical marijuana

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Joined: Thu May 14, 2015 3:06 am

Re: Pain relief and medical marijuana

Postby addseo1115 » Thu Jun 11, 2015 2:59 am

I think your forum is so interesting.

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Joined: Wed Jul 08, 2015 8:57 pm

Re: Pain relief and medical marijuana

Postby Rich61 » Wed Jul 08, 2015 10:04 pm

Hello Violet-
I am a 53 year old male with PKD and PLD. I have had my kidney transplant for 10 years and had a double nephrectomy in 2009. Before that I suffered with excruciating pain. I also have acute polycystic liver disease (very painful) and am currently undergoing liver transplant evaluation at a major hospital here in California.

I have tried almost every variation on opiates and narcotics that MDs prescribe. Hate em. Medical marijuana has been the only thing that has given me relief. Personally, I'm not a big fan of "pain management" solutions. Doctors always respond with the standard reply, almost word for word; "There have been no clinical studies on the effects of marijuana on...blah blah.." It's a pat CYA response. How can there be a study if it has already been determined marijuana "has no medicinal value" by the federal government?

The biggest issue docs with raise with MM is risk of aspergillosis; a serious infection, usually in the lungs, caused by mold/fungus (aspergillus) that may be present in some MM. It is important to be aware of that. You can google "aspergillus marijuana" and find many articles about it.

Basically, the mold will form if the marijuana is improperly dried and stored. I found a collective that tests each batch of MM for mold and fungus. They specialize in supplying MM to cancer patients and the like. Not saying there is no risk, but trying to reduce the odds. Not sure if edibles eliminate this problem.

Someday in the future (I may not live to see it) the medical community will wonder why they were giving highly addictive narcotics with numerous side effects to patients when such a relatively benign alternative as MM was available.

Additionally you should be aware that if you are to be considered for a kidney or liver transplant you will NOT be able to use MM in any form or you will be removed from the transplant list.

Best to you,


Re: Pain relief and medical marijuana

Postby Tim » Sun Jul 26, 2015 3:10 am

Hi, I know what you are going through because I am in the same boat. With regards to medical marijuana I used it for years to great effect. It was the only thing I could find that helped the pain and didn't make me sick. The only reason I have stopped is because you cannot get on a transplant list while you are using(at least in Washington state). I just started peritoneal dialysis 2 months ago and it would help now more than ever but alas, federal regulations and ridiculous scheduling be the FDA have stunted research in this area for decades now so we all must suffer. Hope this helps.

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Joined: Tue Aug 25, 2015 8:10 am

Re: Pain relief and medical marijuana

Postby Johnwillton » Tue Aug 25, 2015 8:28 am

Hi, I suffer from low back pain from last 6 month. I try many thing to get relief from it. But finally one physiologist suggest me to take pain-o-soma 500mg. i regular use it and do regular exercise. Now i am well.

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Joined: Fri Aug 28, 2015 7:16 am

Re: Pain relief and medical marijuana

Postby donnawilson » Thu Sep 24, 2015 6:11 pm

Yes pain-o-soma an much more effective medicine in pain. i also used pain-o-soma 500mg when having pain in any part of my body


Re: Pain relief and medical marijuana

Postby flyspyro » Mon Mar 07, 2016 6:10 pm

Violet, you are the first person I have seen with a very young diagnosis of PKD. I have been trying to find someone to relate to. Most people find out later in life and don't have issues till later. I also found out about 8-9 years old that I had pkd. I've had chronic pain most of my life. I also have chronic pancreatitis which is also a rare case and that started around 7 years. They found out I had pkd because I was so sick from the pancreatitis. I have also had surgery at the age of 10. yes for me marijuana works. I used to do the hard core pain meds but I couldn't think and I didn't like it. I'm 30 now. sometimes I do take the pain meds if a cyst pops but other wise i'd rather suffer or use marijuana.


Re: Pain relief and medical marijuana

Postby Snuggler41 » Fri May 20, 2016 7:46 am

Yes, I too been suffering for many years the medical Marijuana helps because it lowers your creatine levels, when they are high it causes pain. Only thing that works. Other pain mess seem to cause more pain in kidney. This is absolutely true.

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Joined: Mon Jun 13, 2016 5:45 am
Location: Derby

Re: Pain relief and medical marijuana

Postby gina62 » Mon Jun 13, 2016 6:04 am

Hi am a person living with PKD, had it all my life but wasn't properly diagnosed until i had a major op and i came out to the PKD news, good news and the bad news the good news being the op was a success the bad news being you have PKD. Ive been aware of this for 10 years now and am now turning 54. and am being offered TOLVAPTAN which is worrying me a little as as so many common side effects. Ive always been one for trying to get on with it but since i hit my 50's because i don't feel as well this disease is really getting me down as ive been told the average life span is 60's. Can anyone on this site let me know if they have successfully reached this age without to many complications.x

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Joined: Mon Jun 13, 2016 7:20 pm

Re: Pain relief and medical marijuana

Postby kcrodri2 » Mon Jun 13, 2016 7:45 pm

Hi all! I saw that some of you are posting about Illinois. I'm currently a student at the University of Illinois and am making a documentary about PKD. I'm looking for some people in the Chicagoland area who would like to share their stories. If you are interested or know someone who might be, please feel free to contact me. My email address is Let's help spread awareness! Thanks!


Re: Pain relief and medical marijuana

Postby SSMpkd » Tue Jun 14, 2016 10:14 am

I have been on Tolvaptan since January and the side effects have been quite manageable. I find the 'urgency' more of an impact in the mornings, with the higher dose. I would say I am at about 5L of water a day, with about 1L of that overnight. Typically I am up 1-3 times per night, and prior to starting I was very worried about this as I have sleep issues. Ironically, I have not found any issue with it. I drink each time I am up. There have been a few odd nights that I have not gotten up at all, and know that I haven't been drinking enough, I can feel it immediately. I feel better when I have drank water through out the night, then the nights that I haven't. The urgency has gotten better over the months, and I would say that the first 1-2 weeks was the adjustment period.

My doctor has been pleased with my tests so far - monthly liver function, urinalysis every 3 months, appt with Dr every other month.


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