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Naltrexone, at a dosage of 50 - 100 mg per day (we take ONLY 3.0 - 4.5 mg) is used to treat alcohol addiction.
At the much higher dosage: "2. Why does naltrexone help for alcoholism? First, naltrexone can reduce craving, which is the urge or desire to drink. Second, naltrexone helps patients remain abstinent. Third, naltrexone can interfere with the tendency to want to drink more if a recovering patient slips and has a drink." 11. Will I get sick If I drink while on naltrexone? No. Naltrexone may reduce the feeling of intoxication and the desire to drink more, but it will not cause a severe physical response to drinking." http://www.well.com/user/woa/revia/reviafaq.htm In the following recent trial of Naltrexone (100mg) for alcoholism, obviously the participants were not required to quit drinking completely: http://archpsyc.ama-assn.org/cgi/con...tract/65/2/135 Alcohol can have a fair bit of yeast, which seems to be a problem for us with MS. That is one consideration. If you have liver problems too . . . but that is obvious no matter what drug a person takes. I drink with the LDN. I lost the desire to get "drunk" in 2003, with a bad attack, but I have drank as many as 5 drinks in an evening. Otherwise, I drink one or two, every couple of days. Cherie |
Well, I'm not any meds right now except Synthroid but I must say that since my dx I don't think I've "made up for not having a drink every day" even once, LOL. But Sally, you know when I do I'll be having more than one martini!! :D
It's interesting though -- my hand trouble in the morning really comes and goes and there have been a few occasions where I've noticed it's not there if I've had a drink or 2 the night before. I've actually wondered about that. As far as the few times a year I'm inclined to yell :partytime2:, this is good to know if I ever take the LDN plunge. A hangover I can deal with. |
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Great link, Cherie, I've heard it before. :) There is also an interview out there with Dr. Bahari. Both interesting.
Everyone keep in mind, though, that Skip Lenz is not a Doc and even though it's true, he knows a lot about LDN, it's effects and mechanisms, and probably the best at compounding it, it is Dr. Gluck of the LDN.org who is the expert, as a Protege of the founder of LDN for MS, Dr Bahari.:cool: Good luck with your Neuros and PCPs to write your Scripts.:hug: |
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I did! I printed that off and highlighted a few areas. I sat there while he read every word!!! He said he didn't see any reason why not to try this!!! Doing the happy dance!!! :Dancing-Chilli::Dancing-Chilli::Dancing-Chilli: The prescription is for 3 months. He suggested I come in for a blood test to make sure it wasn't causing any problems with my liver. Woohoo!!!! Ummm, is there a secret handshake or anything special I need to know about? I hope there's not any hazing involved to join the LDN club!!! :eek::D |
GOOD JOB, Twinkletoes!! :highfive:
What dosage did you get to start; 1.5mg, 3.0mg or 4.5mg? A lot of people start with 1.5 mg, and make their way up in 1.5mg increments. Last I heard, Skip would make them up in 1.5mg pills, and then you can adjust (double, triple) as you see fit. You may get up to 4.5mg very quickly or decide you want to stay at 3.0mg for a long while, depending on what works for you. When you stabilize though, he could make the pill at that dosage for a long while, or forever. Cherie |
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I really really want to try the LDN tho, not because I think it'll stop any progression or anything (I dont think it works that way), I just want to see if it'll work for some of the symptoms like numbness. I just want to figure out what information would be best to print out to present to him. Last time I tried to ask about the LDN, he thought I was asking about novantrone. He wears hearing aids, and I was dumb and asked him about it when his back was to me. He didnt hear me correctly. |
Way to go Twink...woohoo!!! Yes what doseage?
It would be very rare to have any liver problems with such a low doseage...3mg...4.5mg. Some liver damage was reported with doses of 300mg :eek: or more. I hope it works well for you...:hug: |
Thanks, Sally & Cherie.
I requested the lowest dosage (1.5 mg.) b/c of something I read about LDN + hypothyroidism (which I take Synthroid for). I'm not worried about liver damage either -- and neither was the doc, but he's just being careful, I guess. Hey, I just got off the phone with Skip of Skip's pharmacy! He was very friendly and we talked about 5 minutes. I told him I had MS and wondered aloud why the insurance companies wouldn't be more than happy to pay this tiny amount for LDN, rather than the BIG bucks for Tysabri. He responded that its possible the insurance companies have investments with the drug companies, so it's purely a business interest. Not necessarily what's best for the patient. He said, "That's why we don't do business with the insurance companies." I've seen him called "Dr. Skip," so asked if he were a medical doctor. He said, "I'm a Pharmacy DPHD -- I actually earned my degree!" Not exactly sure what he meant by that, but I thanked him and will wait for the pharmacy to call me once they get the prescription from my doc. :trampoline: |
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I was concerned that he may not read the whole thing, so just highlighted a few points to help make my case for an LDN Rx. It worked!!! Yippee! |
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Do you remember what link you used to print out the information?? I'm afraid that if I print off info from the wrong website, that the neuro wont take me seriously on wanting to try LDN. I wonder if I can find information about the clinical trials for LDN and Copaxone. Or an actual medical journal paper that talks about LDN. |
Erin,
The main reason that doctors don't rx this is that they don't know anything about it. They are too lazy to do their own reading, or they would find out just how harmless this small dosage of drug (with an extremely long and safe history) is. My doc made me do up a "risk assessment", which included documenting the dosage required, potential side-effects, an assessment of it against the NMSS "Danger Signals" and "Look before you Leap" considerations of CAMs, etc., before he would rx it. It took me 6 months of research and documenting (I was NOT well at the time) before I got it all together, but my rx was sitting at his reception 2 hrs after I dropped it at his office to read. :D I will PM you what I wrote, although it may be SLIGHTLY outdated now. It has the links to the information that Sally is talking about too, so you will be very informed and prepared by the time you visit your doc. That is the key to getting the rx. Cherie |
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I think what I'll do, is just at the end of my appointment on wednesday, is hand him the printouts of the information. Just tell him that I'm kind of interested in it, and want to know his opinion. I wont try to show off what I know about it. Maybe, ask him if he thinks it would be something to try, and maybe he can get back to me later on it. I have a feeling that he wont be open to letting me at least try it. If he doesnt give me a Rx after he's read about it, I could probably try and see if my regular doctor would let me try. I looked at some of the stuff you sent me information about, and was hoping I'd see a medical paper that told about it. It all seemed more like medical company propaganda then something that would be published in a medical journal. Maybe I just didnt read everything on the links. I've been saving up some (not urgent) medical issues for my regular doctor that I'm going to ask him about. So, if the neuro doesnt give me a Rx, I can always hand the regular doctor the printouts about the LDN and see if he would be willing to let me try. Doesnt hurt to ask. Does the LDN help some people with stiffness in the mornings? I know that I have a little spasticity, but it's not been too troublesome unless I've done something stupid like too much exertion the day before. I'd just like to see if the LDN could do a little symptom management to keep my piddly symptoms like spasticity and numbness from getting too horrible. If I could keep them piddly little symptoms instead of ginormous bothersome symptoms I'll be happy. |
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There is a box you can click that takes you to LDN as it applies specifically to MS. That's the one I printed out. Good luck! |
my brother the doctor
As few of you know, my brother is a neurologist. He is just not an MS doctor.
This is what he had to say: I hadn't heard about it, so I looked it up = probably the same information that you have. It seems to me that it is not likely to be harmful, although it hasn't been studied as to either effectiveness or as to toxicity. You can't rely on inidividual reports. There have been many drugs over the years which are touted as effective for this or that, which then are proven to have no effectiveness. Think about almonds for cancer and all of those who went to Mexico to get some sort of almond extract therapy. Are you aware of something I'm not? If Wingerchuck is an MS expert, he may be more in tune with reports about naltrexone. |
oh by the way
Your doctor is there for YOU but it is your body and your decisions. When I took Rebif, there were 6 month tests to see how my liver was functioning.
Naltrexone may have toxic factors but probably no less than the more expensive drugs. I say that you politely let your doctor know he is writing the script. It is your body and your decisions. Offer to sign a waiver so he has no fear of being sued if he has that concern. For me, no is not an option. |
I just wanted to share a story with you.
I met an online friend at a LDN support site years ago and we have been e-mailing, off and on, since.. He was one of those gun-ho advocates of LDN..:rolleyes: To him, it was a miracle drug. I was on LDN, too but I sure didn't share his enthusiasm, since I was not having as much symtom relief as he was. Just recently I wrote to ask how he's doing and after about 2 weeks, he wrote back to tell me that he had been in remission for the last six years, on LDN.....but......He started having more weakness in his limbs and went to his Neuro. Many tests later, he was told that it wasn't MS but ALS..:eek: His Doc said that it's amazing that, it hasn't progressed any further than it has and to continue to take his LDN. His Neuro is convinced that it helped to hold back the progression of ALS..:) He is still on LDN and doing pretty well so far. I will keep in touch to see how he does in the future. I hope and pray, every day, for him, that the LDN continues to hold off the ALS progression. |
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Naltrexone had been FDA approved for many, many years, and has undergone several extremely high dosage trials, for as much as 300 mg per day. We are only using 3.0 - 4.5 mg per day (about 1% of the trial dosage). http://www.rxlist.com/cgi/generic/naltrexone.htm Cherie |
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I just wanted to run it by him to see if he had heard any negatives. As you read, he is not familiar with the drug at all. All the websites referenced seem to center around one doctor or Skip's pharmacy. Even the .org (which is for me, more reliable) said that LDN had not been tested for MS. I also asked my friend, a pharmacist, who mixes this compound for patients. She has no MS patients but does make it for others. She had no problem with the low toxic dosage. I hope I helped with your confusion... |
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What you've said is exactly the reason I made my prior comments to Erin: Quote:
Naltrexone is just a minute dosage of a very well-established medication. That they haven't done many large trials on the toxicity of LOW DOSE Naltrexone is probably a moot point. That would be like saying that Ibuprophen has been safely trialed at 5X it's recommended dosage . . . BUT it has not been trialed at 1% of that dosage (so we don't know it's toxicity at that level :confused:). I agree there isn't any scientific proof of LDN's efficacy for MS. There are a lot of (especially symptom) meds we take that have never been trialled for MS specifically. Only anecdotal evidence exists that they may work for us, but that doesn't stop our doctors from prescribing them when we ask though. :cool: . . . Cherie |
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Like I said, it took 6 months before my doctor agreed to rx it, and by that point, I was a pro on everything there was to know about LDN. :cool: I think it was more my LONG-term determination and tenacity that wore him down though. ;) Quote:
At this point, it seems that you are probably not "sold" on the idea yourself, and that is ok. Personally, I wouldn't "try" something that I didn't feel 100% confident on, and I would research until I was convinced it was the right choice for me. There is no way a doc could turn me down once I have that conviction. :p LDN's intended use is NOT as a symptom management drug. It may be that we get symptom improvement, and most people seem to, but that is not the reason I went on it. I went on it to try to reduce relapses and slow disease progression, and if I got the symptom management too . . . that was going to be an added bonus. I was lucky that it did work in that regard for me. Some people do opt to "sell" it to their doctors for strictly symptom improvement, and no doubt it would be harder to convince them that it might work on the disease process as well. Whatever works to get the rx . . . ;) Cherie |
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All the stuff I've read about it, stuff that you've said and things other people have said about it on several other forums that I lurk on have been nothing but good things about LDN. I just think my neuro wont want to give it to me because of the lack of any large scale trials for it. I'm going to hand him a print out of some of the information you gave me before I leave his office today, and just hope that he'll call in a Rx for me. I have to go check and see if the compounding pharmacy here in town can make it.. Edited to add: Called the compounding pharmacy. They CAN make it! And, they've made it before! So, at least I know I can get it locally if the neuro is willing to give me a Rx. The pharmacist told me that it's about $70 for 100 of the 4.5mg dosage. She didnt know what the lower dose price was, but I'm pretty sure that I can afford it. The pharmacy is a cash only/credit card business. They dont do insurance. But, at least I can get it there. |
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The "ideal" dosage for LDN is 3.0mg - 4.5 mg. Some (especially men and petite women) can't get higher then 3.0 mg, but ideally everyone else will ultimately aim for a dosage of 4.5 mg. I think 1.5 mg is a good starting dosage, especially if you have contributing medical concerns which might conflict. 1.5 mg is not likely to get you much symptom improvement (if you get this "bonus"), and according to Dr B, is not going to protect you from having relapses or progression either. The minimum is 3.0mg in order to realize these benefits from LDN. If it takes 3 or 6 months to get up to 3.0mg, and you need tests to ensure that this isn't affecting your other condition . . . so be it. You will need to move up at some point though. Cherie |
I think it's, actually, a better idea to start at 3mg and go down if necessary. Most people are ok at 3mg to start and many stay there a long while, before going up to 4.5mg....I did!!
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Getting off to a Rough Start
My doc approved LDN for me on Monday.
So yesterday I got a message from my PCP's office. The phone number for Skip's Pharmacy didn't work. So I gave it to them again. I just got home and there was a message from Skip's in Florida telling me to call them b/c they needed my info. And so I did. Two different ladies were helping me, and neither could find any Rx information. I was on hold for 10 min. and "Roseann" said to ask my Dr. office to call them. I said, "I already did that, and they did." I suggested SHE call them, but she insisted that I do it again. :mad: So she took my number and will continue to scour the office for the papers. Losing faith fast. |
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Thanks for the heads-up. I was wondering about that earlier. If I end up calling in another prescription, I'll see if I can get that changed. What pharmacy do you use? I think I will find another one if they have lost my info for good. |
Good news!
Someone put a hyphen between my middle and last names, so they couldn't find it on the computer. :confused:
Now then, this is what Phil, the pharmacist told me during our little chat. He said that nearly everyone starts at 1.5 mg. for 1 month, then 3 mg. for the second month, then ramps up to 4.5 the third month. This is to hopefully avoid the possible side-effects of "sleep loss and transient slight leg spasms." I asked him what he knew about LDN's effectiveness with Crohn's disease. He said there was a Dr. Jill Smith at the Univ. at Penn State who had completed a clinical trial on Crohn's patients. He said they had an 85% success rate, with at least one patient going into full remission after 1 month. I got the idea it wasn't a big trial, but still, those numbers are very encouraging. I will have to share this with my bff who just got dxd and has been so very sick. BTW, a 1 month prescription is $9.95!!! |
Phew, no wonder you are called "TwinkleToes" . . . I can't even read fast enough to keep up with your progress. :p
I started at 3.0mg, and I did have some minor/transitory side-effects. I know others who've started at 4.5 mg, with no issues at all . . . but I am sensitive to meds. The reason I thought 1.5 mg was a good start for you though, was because you mentioned that other condition, and because you already had the rx for 1.5 mg. I really don't think LDN is going to affect your other condition, but understandably your doc will want to keep an eye on that as you transition higher. I really just wanted you to know that you aren't likely to see much (if any) improvement in symptoms at that dosage, AND, to let you know that you will have to move up to get much benefit. I was going to say that I think Skip's has the best reputation for compounding LDN, even if there was this initial glitch. A number of people have tried other compounders, but the pharmacy needs to be up on what fillers are the best, and you don't want them crushing Revia (50 mg pills of Naltrexone) when they compound into smaller dosage capsules. Some fillers make the drug too slow release, and Skip uses the PURE Naltrexone powder to compound . . . so I think he is the preferred source in the US. He is also great about talking one-on-one to anyone who has concerns along the way . . . and that is priceless. I use a local compounder (in Vancouver) because it is just too slow getting it across the border. Mine is compounded into a liquid though, so I don't have to worry about "fillers" in a capsule. Cherie |
No LDN for me...
I just got back from the neuro.
It went like I thought. He told me that he'd heard of it, but that his opinion was that people who are "feeling better" while on LDN are getting a placebo effect, and that he didnt think that it does anything. He also mentioned something about side effects, but really didnt get into what those side effects are. So, no LDN for me...(at least from him...) *grumble* Oh well. I'll ask my regular doctor about it the next time I see him and see if he'd be willing to let me try it. |
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One of the obvious disadvantages to not having trials is that it has not proven to be effective for MS . . . however, clearly it has not been "disproven" either. Not sure how he can be so convinced it's placebo, given that. :confused: Either way, since it's harmless enough . . . why not let people be happily living pain-free, without a claw hand, while urinating properly, having semi-regular bowel movements, and with no more cog-fog . . . even if that is just a placebo effect? Hope your doctor is more open-minded. Cherie |
Sorry Erin....better luck with your PCP..:hug:
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argh
argh lady_express.
You make me feel as if I need to defend my brother. He is not "too LAZY to do his own reading":mad: and just not familiar with the drug. He is not omnipotent (all powerful) nor omniscient (all knowing). This drug is not a common MS drug or even a common neurology drug. So he is cautious but he had no problem with it, he deferred to my MS doctor to hear what the guy had to say. He saw no harm and said to keep him informed. He has a caseload of patients and he is one of the GOOD GUYS. I will readily omit that your comment about neurologists being "LAZY" and asking a rhetorical question in regards to my brother's honest QUICK response makes me a little P.O.ed.:mad: I was all set to leave it alone until you decided to tell me that my answer confirmed your suspicion about neurologists. He was not familiar with it, THAT WAS ALL. He is not an MS neurologist. For the record, I have been to several neurologists looking for a good fit. NOT ONE of them has every treated me with disrespect. If he/she did, I would have the good manners to say something so that he/she would have the opportunity to correct their attitude. Twink since you have your prescription, just call my friend here in Phoenix. I will PM you with her Apothecary phone # and she may have you fax the script. You can ask her about mailing it to you or I can, just PM me. I will ask her, no problem. Argh. Being that I grew up with a really smart brother (it was no fun following him in school, teachers always got SO EXCITED to have his sibling and ha! was that an education for them!:D), I really choose to ignore overt anger over neurologists. But don't push my buttons, I am a nice old lady until I get a little hot under the collar. |
Great going, Twink....good luck..:)
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Please don't feel you need to defend him in any way, and like I said, I do appreciate that they have no idea about this drug. I wasn't really meaning to target neurologists or MS Specialists with that comment either, as all kinds of doctors (including mine, who is the BEST GP out there!!!) seem "too lazy" to do their homework on it. In retrospect, maybe "lazy" wasn't the right word either . . . My doc did go on the internet, just your bro did. His first thought was that it could be another "snake oil", but he really didn't see any harm in it either. He wanted to make sure I knew what I was getting myself into/setting myself up for though (he was sure it wouldn't help), so he made me do all the work on the written "risk assessment". That's probably the real reason, not laziness. Sorry, poor choice of words . . . but not directed at your brother at all. The only reason I brought it up again later, is that he mentioned there were no studies on the toxicity of Naltrexone . . . which is not at all true. He was giving a quick, off-the cuff comment . . . which might scare the pants off of someone who would otherwise want to try it. Many of us trust the professionals to know what they are talking about before they say anything, but that is not my experience with talking to them about LDN. Cherie |
Ok, go back to your corners now..:D
This thread is about helping people, who want to try LDN, so lets try to keep it that way, please. |
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and Aarcyn. :( Cherie |
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My neuro at least had heard about LDN, he just has an opinion that it wouldnt do anything for me. I think that it might help, so I'll just have to ask another doctor. At least my neuro didnt go off on me about doing research on the internet. He didnt seem offended that I was asking about LDN either. So, I didnt walk out of the office feeling like I'd been reprimanded. My neuro told me that he thought I was doing better than before. I told him that I'd had a bit of dental work, and that the dentist said that every tooth she's replaced a filling in, had infection in it. She thought the dental infections might have been having an influence on the MS, and the neuro seemed to agree with that. He told me to get the rest of my teeth fixed up and see if that helps me a bit more. At least I had a pretty decent neuro exam today. I think he was impressed with my heel-to-toe walking. I was all over the place the last time I did the heel-to-toe, and this time I actually managed a somewhat straight line. So, at least there seemed to be some improvement in the neurological wacky-ness. |
Yeah, Erin, I had MS-trouble from my tooth infection last year too. Glad you are making improvements since starting to take care of this issue. I did too.
I'm glad to hear that you do not feel belittled or intimidated by talking with your main healthcare provider. That is valuable. I guess what frustrates me is that they always seem to have the final word on what they will "allow" us to try . . . even if there is no logical reason not to try it. In the case of LDN, it's not like there are known risks, or previously reported serious adverse events to take into account. They just don't know anything about it . . . but if they researched it, they would. It's that simple. My neurologist was the same when I first asked, actually. Since then, I know the research center has rx'd to many people, and no doubt it has not worked on some. I talked to a lady the other day who got it from our research center, and he had rx'd it with her Rebif (but had not mentioned that interferons and LDN may conflict/not work together). Obviously he hasn't done his homework. :rolleyes: The bottom line is it is up to us to thoroughly understand the complexities, then fight for what we believe in. I have found no "logical" reason for a doctor to refuse to rx it though (so long as it doesn't conflict with what we are already taking), and lots of good reasons to give it a try. Cherie |
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