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Nabilone anyone?

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Fibromyalgia
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Posted 4/26/2014 4:32 PM (GMT 0)
I am a 58 yr. old disabled female. I am unable to work outside the home. I have suffered with Fibromyagia for almost 20 yrs now and I think I have tried every medication and therapy (both traditional and non traditional) with limited results. Some things seemed to work for awhile but nothing ever worked long term.I do take vitamins as well. I have read, and researched everything I could find about this painful disorder.
I do have a question.
Has anyone else here been given Nabilone to try to help Fibromyalgia pain??
This past week my doctor prescribed a very low dose after I asked him about possibly trying medical marijuana. I am having a horrible time and at my wits end and willing to try anything. He started me on 0.25 mg and said he will up it when we see if I can tolerate it and how it works for me. Well it does nothing for my pain and just makes me tired (not enough to actually make me sleep)Because it did nothing and I am in so much pain I took a Percocet (I am on a low dose daily) and wondering if I should still take the Nabilone too? I would love to hear from anyone who is taking it and what they think of it, please. Thank you.
Posted 4/26/2014 8:08 PM (GMT 0)
IHurt 2 welcome ! I don't take this medication. I actually had to look it up. I was surprised to see it was used mostly for nausea. Was your Dr. wanting you to take it without the Percocet? I know sometimes Dr's will order antimetic drug it enhance the main pain pill such as Percocet. I know sometimes it will give the Percocet a better effect to it.

Have you heard or thought about buprenorphine( subutex)? This is what I take. It has worked very well for 4 years untill I developed stenosis and discs issues in my back. If I take 2 it really helps, but I have to get that passed through my Dr. next time I see him. I have loved this drug because I don't feel dependent on the hard core narcotics anymore. It's so long lasting that sometimes I forget to take it. I hear they make it in different forms such as patches. I have heard poor results with the patches. My Dr. told me that mine was so much more stronger then the ones that are mixed with things or in patches. The subutex is a narcotic still, but a different form.

4 years ago I got tired of the strong narcotics and they began to cause more pain. I started to become resistance to the pain meds. So I decided I needed off them and I needed a change. So I went through therapy because I have been on narcotics for many years. I was taught how to cope with pain in different ways beside narcotics. It really helped. They knew my history with chronic pain so they knew I had to have something to keep me comfortable. So they mention this med and I gave it a try. I have been on it ever since and I take twice a day.

I am glad you found this forum. I hope you can find relief with your new medication. Believe me I thought abouut MJ before. In my state you can get a medical approval to smoke. My problem is I have a addicted personality and I am not sure how that would work. Lol I have my eyes on Colorado to see how people handle it. They are trying to pass it in our state now. I hope we see you around again. Sometimes the forum can be a little slower on the weekends so give some time for people to respond.

Post Edited (ak angel) : 4/26/2014 2:19:03 PM (GMT-6)

Posted 4/26/2014 9:48 PM (GMT 0)
I have not heard of Subutex but will research it and ask my doctor about it. Nabilone is usually prescribed to cancer patients for severe nausea during chemo therapy when nothing else works. They have found that it does help with pain for some fibro patients. Nabilone is chemically related to marijuana and belongs to the class of medications called cannabinoids. It works on centres in the brain to reduce nausea and cause sedation. I also have insomnia so we had hoped that it would help me get some sleep as well. My biggest problem is I put off taking my meds because I am afraid of getting hooked on them. I take minimum dosage(5 mg Percocet) only as needed. I have never had my dosage of that upped in over 2 yrs. We had hoped the Nabilone would be effective and I could quit taking the Percocet. Dr. told me we will start at the lowest dosage(0.25 -1 capsule 2X a day as needed) and work our way up in dosage until it helps. He said for now try the Nabilone and if I don't get any pain relief take a Percocet which I did today. I contacted the pharmacy here and he said at the dosage I am on taking a Percocet with the Nabilone I would just get really, really sleepy.(I did sleep for about 4hrs yeah!!) I read though at higher doses taking the two meds together could cause respiratory problems. I REALLY appreciate your taking the time to post and the information you shared. Thank you ak angel. I'm in Canada but maybe Nabilone is not offered there??
Posted 4/27/2014 4:08 AM (GMT 0)
I hurt- if you have no trouble with taking the Percocet then I wouldn't worry about it. There is a difference between dependent and addicted. I was addicted and it was causing havoc in my life. The subutex works in a unique way so you don't come so addicted to them. They can be pretty costly, but my insurance picks most of the cost up. The pain managements are starting to see how well it works for chronic pain without becoming so addicted to them. You can read stories on line about it. Some do well like me and others don't . It's like anything we try, we are all different in how we respond.

If you need something for sleep I take an antidepressent. It's called remron and has something in there that calms your racing thoughts and allows you to sleep. It works real well for me. They say why fibromites don't sleep is because of the pain. This allows me to sleep so then I don't usually don't feel much discomfort. I take my subutex and the remron at bedtime.

Post Edited (ak angel) : 4/26/2014 10:37:34 PM (GMT-6)

Posted 4/27/2014 6:41 PM (GMT 0)
Hi there all, I'm new to the Forum :) I am on Nabilone for my Fibro & Pelvic issues. I have had severe Fibro for about 13yrs, (since diagnosed). I have been on just about every medication on the market. And Nabilone is my last stop. I am also on Butrans Pain Patches, Seroquel & Cypralex. The NAbilone is a god send really, I was blown away by how much this pain med combo is working for me. I had to go to a Chronic Pain Specialty Clinic about 9hrs from home to get prescribed this. My Family Dr is more than amazing and is following the reccommendations of the pain clinic. I was told I would be on this medication for the rest of my life. IF there was any pill I dont mind being told that....its this one. The side effects are sooo minimal and not overly bothersome at all. A little dry mouth and munchies is a small price to pay for pain relief. IMO :) If you want to know anything about this medication...I would love to help however I can.
Posted 4/28/2014 6:40 AM (GMT 0)
Thank you Angel for the information and for sharing. I really appreciate it a lot.
Ganesa, thank you too for sharing this with me. It is so good to hear positive feedback about the Nabilone. Wow though that you had to travel so far from home to get help from the pain clinic! Hope you don't have to do that too often. That alone would play you out!! The dry mouth I could handle..the munchies..eek! I get them from the Percocet believe it or not. I am way to short for my weight now so hoping I can do something else if the munchies hit from the Nabilone lol. I will definitely call on you for questions I may have. Thanks so much :) Can I ask what dose you take now? Just curious.
Posted 4/28/2014 3:51 PM (GMT 0)
IHurt2...

So glad this info was of some help...I would be glad to give you any info I can to help. I am on a dose of 0.5 3 x Day. Total of 1.5mg /day which is actually on the lower end of the normal dosing scale. I started on just 2xday...but my pain was still having severe days where I couldnt get out of bed. So my Dr. raised me up to 3.

Combined with my other meds....3 is about all I can manage or else I would be spaced out all the time lol And although I work from home my job is challenging mentally so I need to be focused.

The reason I had to go so far was because I live in a rural Northern Ontario area where Dr's are certainly limited and its alot harder to get help for our types of conditions. My Dr. admitted he has never even heard of Nabilone...but was fine with prescribing it and doing all the follow up from the clinic. I will most likely not have to go back to the clinic. I have really been on just about every med on the market for pain & fibro....this is the best combo I have found since it seems to have the least side effects.

I would love to get to the point where I could manage on just the Nabilone. I would like to get the Butrans patches out of my system some day. (wishful thinking).
wink
Posted 4/28/2014 7:17 PM (GMT 0)
Ganesa..interesting that you are in Canada too. I hope you don't have to go back to the pain clinic any time soon. I live in a small rural community in Alberta. Luckily I have a very good Dr. who is willing to try new or alternative treatments. (like you tried most of them) I hope and pray that someday you will be able to manage on just the Nabilone. Wouldn't that be wonderful :) I am going to try to take it faithfully this week to see if it helps me with pain. I took one last night and was still up all night :( Hope you have a good week!
Posted 4/29/2014 12:41 AM (GMT 0)
Well I do hope it helps you out this week. I do find that you need to take consistently to gain the full effects of it. I look forward to hearing how your week goes. I too am blessed to have found such a great family Dr. He fought for me to get the right help when I was having all my pelvic issues and he wouldn't take no for an answer from anyone lol....if not for him I wouldn't be here right now.
Wishing you a great week with less pain :)
Posted 4/29/2014 3:21 AM (GMT 0)
I hurt- Genesa mention butran patches. This is another form of the subutex or buprenorphine I mention. Mine are much stronger then the patches. They are sublingal.
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