Sonny was on Marinol for 4 weeks,now off for 1 month. First 2 weeks sawa little change then nothing for a month or two.Third monthe he started being more alert, speaking more(not really a conversation) laughing and generally very happy. All this late afternoon and evening.This month that he has been off it he continues to be speaking even more(lots of swearing).Downside,he realizes more where he is and says he'll burn the G.D. place down.I explain to him that since he cannot walk or help to transfer I cannot take him home He says Okay and that seems to satisfy him. We stopped the Marinol on advice from druggist to stop for a month or two and then start it again to get full benefit . He is only on 5g. twice a day. The 10mg. was just more than I could afford.I private pay $390 a month for it. Breaking that down to $13. a day I decided it was worth it to see him smile and be interacting with the staff.They do dote on him which makes me very happy.He no longer hangs his head down all the time ,and keeps his eyes open.I am not fooling myself that it will help forever or prolong his life but will take what I can get when I can get it.I think of all of you every day and this battle we are going thru.God bless you.
So glad to hear the marinol is working for your husband. We met with DH's PCP yesterday to discuss what appears to be the onset of type 2 diabetes which I am fairly sure is being caused by the Seroquel because diabetes does not run in his family. He's lost 15 lbs in 4 months and is now not interested in eating, So I asked the dr. if we could try marinol to help with his appetite. Well apparently in NJ there are strict rules as to the conditions (cancer) you must have before it can be prescribed and only an oncologist can prescribe it. I have to do more research and speak with a pharmacist about it so that when the time comes and I want/need him to be on it we can get it.
There is a resident in Sonny's NH that was started on Marinol for appetite and I hear it is working well. Insurance seems to pay for it for certain things.It has been Okayed in PA since 1985,class 3 drug.Had a hard time convincing Sonny's Dr. to let me try it for AZ.
Wife (63) has been diagnosed with ALZ for a little over 2 years
Medical community is unanimous that there is nothing they can do treat the disease, however they have these wonderful pills @ $15 that may help with the symptoms
Looked into the possibility of getting into a study for something that might help
Only things available are studies for more pills for symptomatic relief, but you need to stop the $15 pills, and that's ok cause they don't know if they do anything anyway
Very interested in the possibilities regarding Marinol..
"Excellent results have been obtained with peroxynitrite scavengers, with reversals of Alzheimer's disease being repeatedly demonstrated." https://www.alzconnected.org/discussion.aspx?g=posts&t=2147510129
Anecdotal discussions I have seen primarily involve its use, when a prescription has actually been obtained, in patients with advanced symptoms
Want to try and get my doc to let us try using it now, while my Cathy is reasonably intact to hopefully salvage more time before this beast gains more ground
Why is this strategy not more widely followed
The side effect array is no worse than what I see on TV for commonly prescribed drugs, and she already has a diagnosis of inevitable shortened life span
Welcome metacomet, sorry you have to join us but we're a supportive group which will hopefully help provide information, experience, compassion and support while you and Cathy are on this journey.
We live in the Northeast and we were recently told by my husband's PCP that he was prohibited from prescribing Marinol; it is only approved for oncologists to prescribe for cancer patients in our state. The doctor was concerned that perhaps the potential side-effects (hallucinations) would create more behavioral issues for my husband who also has young onset dementia (FTD, dx at 58).
Seems to me there's a resistance to prescribing the drug.
the pot molecules THC and CBD are the ones shown to lower inflammation in the brain. CBD can be bought without a prescription since it is considered a food additive, not drug. THC can be bought in any state that has medical marijuana.
LFL I was a pharmacist now retired. I would suggest you find a more compassionate PCP. Marinol is readily available in NJ and most physicians with a modicum of compassion have no issue with writing off label Rx's http://www.webmd.com/a-to-z-guides/features/off-label-drug-use-what-you-need-to-know.
When faced with DW's "terminal restlessness" I found a local teen who was able to provide the real thing which I brewed at tea or made cookies. This last ditch attempt proved far more effective than any of the most powerful psychotropic meds Hospice MDs were prescribing to relieve her symptoms. The cookies/tea calmed her more than the Haldol + Seroquel + Lorazepam prescribed in varying dosages during repeated attempts to regulate her meds. She went weeks never getting into bed to sleep- literally sleep walking. Hospice personnel was aware of what I was doing and wink wink to whatever helps was their attitude With AD there is no downside to trying, the outcome in inevitable
Marty, thanks for your professional perspective and info. I appreciate your chiming in. Since NJ is a heavily populated state I was surprised and skeptical regarding the PCP's comment. I just couldn't believe it's not available here.
Usually this PCP is quite compassionate and willing to try things I suggest but he stopped me from pursuing this further. I'll take your advice and see what other physician might be willing.
I don't understand why a PCP would oppose Marinol for a dementia patient on the ground that it is an off-label use but be willing to prescribe Seroquel. Isn't the use of Seroquel for dementia an off-label use? Or maybe this guy actually believes that only oncologists are allowed to prescribe Marinol. If that is case, this doctor's only problem is not a lack of compassion.