It has been one week since I started my husband on dronabinol 2.5 mg 2xday. I am amazed!!! Our neurologist has wanted Lloyd in a nursing home for a year now and in a wheelchair for the last 10 months. I have done neither. Our last visit to the neurologist was in September when he suggested I stop Namenda because it was of no further benefit. I had already stopped Aricept, Depakote, and Keppra. I had read a little about Marinol and was skeptically hopeful. Last week he started having even worse headaches - excruciating. I called the neurologist about the headaches and the possibility of starting Marinol. His assistant called me back to say he had nixed the Marinol and that the headaches were "just the progression of the Alzheimer's". So-o-o I called our family doctor and he got us in the next day and I was able to convince him the Marinol was worth a shot. Getting the Marinol was another story. Our insurance would not cover it even though our doctor had prescribed it. It costs anywhere from $317 to $400 per month. The Giant Eagle pharmacy gave me all the discounts they could come up with and I paid $135 for the first two weeks. It has been one week. He has gained 10 pounds. He hasn't known people's names for over a year. He walked into my sister's business last Friday and said "Hey, Judy". He watched a cop show on TV the other night and someone said "put your hands in the air" and he did it! I had knick-knack pieces that I wanted to glue back together on the dresser that disappeared today and I commented on how I was not going to be able to fix the item without the pieces. He came into the computer room with the missing pieces in his hand. He has not been able to understand for so long. His comprehension was zero!!! I have been on the computer for days looking for studies and research involving Marinol/dronabinol/THC relative to Alzheimer's. I will share some of this with you here. Studies conducted by Dr. Maria de Cabellos at the Cajal Institute in Madrid show that THC inhibits the activity of the microglia cells that surround the neurons in the brain. Microglia, when active, collect near amyloid plaque deposits and trigger the brain's immune system causing inflammation and headaches. Let me add that the Cajal Institute is the oldest neurobiology research center in Spain and has been around for over 100 years. Dr. Joshua Shua-Haim, director of Meridian Institute for Aging in New Jersey conducted a study of 48 patients in a dementia unit for one month using Marinol/dronabinol/THC starting with 2.5 mg 2xday. Results were weight gain - 100%, improvement with agitation - 65%, improvement on MMSE (Mini Mental State Examination) - 37%, functional improvement - 33% and NO adverse effects. In October of 2006, researchers at Scripps Research Institute in California found that THC can prevent an enzyme called acetylcholinesterase from accelerating the formation of "Alzheimer's plaques" in the brain more effectively than commercially marketed drugs. They said THC is also more effective at blocking clumps of protein that can inhibit memory and cognition in Alzheimer's patients. This was reported in the journal Molecular Pharmaceutics. Before dronabinol, I was just waiting for him to die. I would have tried anything, but had given up hope of ever finding something that would help. I have hope now. I don't know if THC can reverse anything, but I can tell you his quality of life has improved.
Linda - that is great to hear. Another success story with marinol like Nikki's. I have said it before and will again - successful treatments that really help and even cure will come where they have not expected in the past.
this is indeed encouraging! We have started my DH on dronabinol 2.5 mg also...I was nervous at first so for 3 days I gave it 1 x day, no ill effects, so today I will start 2x day. I am hoping it helps with appetite, and maybe relax him. He gets so anxious at bedtime and sleeps poorly most nights. Surprisingly, our insurance will cover it...for now... I will let you know how things go.
I just wonder if it doesn't get a bad rap because it's the "marijuana"pill. I personally don't care where it came from if it will help Lloyd! I just wish insurance would cover it. His family has offered to help pay for it, but I have an appointment to go to the bank tomorrow and take money out of his investment account. I want to know the money will be there to pay for it. I will continue to search for more scientific information to share with you on here. Bella, is your hubby taking anything to help him sleep? Mine takes 100 mg of Trazadone at bedtime. He was also taking Namenda at bedtime, but I stopped giving it to him last night. He will still be taking one in the morning, but I hope to stop that, too. I just don't want to take it all away at once since I don't know if he needs to be weaned off of it. He usually sleeps 6-8 hrs. per night, but there are still sleepless nights once in a while. Also, the myoclonic jerking is almost gone! He's fallen once in the last week. He used to fall up to 4 times a day.
Nikki is the reason I wanted to try Marinol. Just the idea that her DH started talking again made me want to do it. My hubby hasn't been able to carry on any kind of conversation for over a year. He had really gone downhill since April when he had a seizure and went into respiratory arrest in the ER. When I brought him home he couldn't use the bathroom or even walk. He had been kept in a hospital bed for 6 days and told it was ok to soil himself because he had on an adult diaper. The walking came back more easily than I thought it would. The bathroom issue was a lot harder and is still somewhat of a problem now. I know that he is going to die from this disease, but at least now if it happens; I will know he died trying. Marinol is the end of the road for us. I've tried everything else - Aricept, Namenda, Depakote, Keppra, vitamin C, maitake mushrooms, Chinese moss extract, Huperzine A, Focus Factor, bottled purified water...you name it. My goal for him is clarity and those first four prescription drugs did the opposite. I will not have him spend the remainder of his life like a zombie drooling on himself because of medication. I would rather he die than lose all quality of life. I guess that is my wish. I do worry that he may seize again because of the Marinol, but it is a chance he would have had me take and I know this. When he was first diagnosed, we talked a lot about everything. We felt the diagnosis was a death sentence. I can't tell you how uplifting it is to see what the Marinol has done for him in one week's time. I know there are risks, but that's true of everything. A person can get hit while crossing the street or be struck by lightning. I am so glad I decided to go for it!
Sounds to me like you made the right decision. I would do the same thing if I were facing what you have at hand now. We all have to make these terrible decisions regarding our spouses' care...we do the best we can and hope our decisions help.
Linda Mc, no my DH does not take anything for sleep. guess that's why I'm trying the dronabinol...was hoping that would help. Actually, in the last 2 nights he has only gotten up every 3-4 hrs as opposed to every 1-2 hrs, and he seems to be able to relax and fall asleep more easily... He is still taking his Namenda twice a day, and uses Exelon patch once/day. Not sure if these meds should be continued or not, but I'm kind of afraid to stop them yet.
Bella, get the sleeping pills, honey - if not for him, then for you! I give Lloyd the sleeping pills because I need for him to sleep. I wouldn't guess the dronabinol would help them sleep since it increases their clarity. Increased clarity for them is like a little kid with a new toy! I experiment with the medication. I was able to get him off Aricept, Depakote, and Keppra; but no success with the Namenda. He takes Namenda 2x day. I started with eliminating the one in the evening, but put him back on after a couple days of seeing decline. I had figured the one in the evening would have worn off by morning anyhoo and he would be getting another one then. His neurologist says he gets no benefit from the Namenda, but what does he really know since I am with him 24/7.
Guess I was thinking more along the lines of the dronabinol "mellowing him out"....he seems so anxious at bedtime, almost afraid to lie down and go to sleep at first. I think it has helped with this a little. We see his PCP next week, and I will discuss this with him...Thanks for the advice, Linda Mc.
My husband was afraid to go to sleep. He thought if he went to sleep, he would not wake up. He will still fight going to bed until the sleeping pill kicks in. Then he just lays down and he's gone. He lays all over that bed and I get whatever is left. A lot of nights he lays on the blankets and I just put a throw over us and pray he doesn't have an accident. Every once in a while, he is up all night even with the sleeping pill.
Bella, I have stopped the sleeping pills now. It has been 3 nights without and he has been pretty good. I guess the Marinol finally kicked in for that, too. He is not nearly as anxious or restless as he used to be. Oh, he still paces some, but not nearly as much as he did. I took him to the PCP yesterday and ran into his aunt there and she could not believe the difference in Lloyd. She commented about the sparkle being back in his eyes and his happy face. And he comprehends about 90% of what we say. Before the Marinol, he didn't understand a single thing we said. Simple commands like 'shut the door" or "sit down" fell on deaf ears. I still worry about everything that is going on in his brain right now and hoping for NO seizures. I'd give anything to know what is going on with that plaque up there. Has the accumulation stopped? Is it starting to disintegrate? I know he has less headaches than before and am considering giving him one anti-inflammatory once a day in hopes of it reducing the swelling in his brain. I've read that when the immune system in the brain kicks in to protect the neurons, there can be some swelling of that tissue.
I will talk to our Dr.this week about trying marinol for Sonny.He can talk pretty well but barely understands what is being said to him.Has anyone tried the marinol earlier in the disease? And is anyone using "street stuff" My granddaughter said she could get it for me ,it would be considerable cheaper.Would appreciate any advice,I'm stuck here in the "boonies" with no one to discuss things with.
I pay $225 per mo for the Marinol. I have talked to others on here and if you get the street stuff, they say you can use it to make tea. I would be remiss about smoking it stupid as it is to say it's unhealthy. I just made myself laugh.
One thing to remember about smoking marijuana - it can make people paranoid. I am assuming marinol does not contain that part of the plant that causes that.
I would really like to try marinol for my DH. But it is not legal in PA.I could get the real stuff thru my granddaughter but do not know how to give it to DH.Can someone tell me how to administer it?
either by marijuana pipe ("bong") or home rolled cigarette. You usually have to smoke it. Marty recently used it for his wife so perhaps he can help. Also, why not ask your granddaughter the best way? If she has it or has access to it, she would be able to guide you. Good luck. I'm thinking of trying it with my DH to control agitation...he's on a lot of meds to control it and I'm thinking a little MJ will do the trick with fewer side effects.
There are four ways I know of to get canuba wax into your blood stream.
Smoke it. Not that healthy and has a recognizable aroma.
In the enema manner. This was a practise in Roman times and other civilizations for a number of 'medicines'. I wouldn't. You will get the strongest effect this way.
Eat it. Grind it into fine particles or chop very fine and either bake it into something without a smooth texture or put it into a gravy.
Drink it. Americans aren't that big on tea generally; but mix a tasty tea with reasonably dry cannibus and let it steep for some time. For a stimulant tea (without the extra ingredient) let it seep 2-4 minutes, for a relaxing tea let it steep over 6+ minutes [edit - the tannins come out]. Use at a maximum a 50/50 ratio and I would almost double the steeping time.
Also don't throw the used teas leaves out unless you won't be brewing another cup the same day.
Note what you start with so you can adjust if it's too strong or too weak. Make sure you start weak. I recommend just under 1/2 teaspoon of this ingredient with 1/2 Tablespoon of good tea and brew that in a single cup of boiling water. A body stone taken orally can last six hours or more where you can feel a bit relaxed, feel a slight buzz, design architecture in your mind, or play back up guitar for Jimi Hendrix.
Try Lemon or Red Zinger or a flavoured tea which will cover the taste more. It's not a strong taste really but it doesn't taste good by itself.
When baking add less than 1/2 teaspoon per cookie or muffin at first. Those are expensive cookies but they can be frozen and taken out as desired for some weeks without losing much potency.
You'll want to try what you're doing on yourself. When you're noticing what a beautiful green everything is outside and you notice you can feel it but you can easily answer the phone as long as nobody minds you giggling a bit - that's the range you're looking for. When you start solving differential equations in your mind and understand Einstein suddenly, you may want to back off with the next batch.
" A pill known as Marinol has been legal and approved by the Food and Drug Administration for use with a prescription anywhere in America since 1985. "
Thank you Wolf,I also believe you enjoyed writing that comment. I think I'll try putting it in brownies, should be able to get those in the NH without being found out. Worth a try as Sonny has taken a big decline.
Two states do not allow Marinol to be sold, and PA is one of them.The legislature voted on it again last year and it didn't get thru.PA is a very conservative state,,,,, evcept for raising taxes.
Actually Nikki's comment is a concern. I want to be absolutely clear I am NOT talking about Marinol. You take that according to the doctor's prescription.
My post above refers to the real weed which is illegal in almost every state as I write this.
We don't do ANYTHING with Marinol except follow the doctor's prescription.
All of my comments refer strictly to the sativa plant in it's natural state which is similar to talking about foxglove instead of digitalis or willow bark instead of aspirin.