Starting LDN - what do you do?

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Starting LDN - what do you do?

Postby Mary » Wed Feb 09, 2005 5:48 pm

I think I want to try LDN but I don't really know what to do or how to go about it. I printed some information and took it to my GP and she is doing a bit of investigating and told me to find a pharmacy that could provide it should she decide to prescribe. I found a pharmacy in Toronto (Smiths - anyone use it?) and my doctor and I are to talk this week.

I suspect I will have to tell her what I need for treatment, but I'm not really sure what that is. From what I can gather I should start at 3mg and take at bedtime every night.

Are you to stay at 3mg or do you aim to be at 4.5mg? What are the signs that the dosage needs to be adjusted? If you feel nothing, not sick or any benefits, should you increase? If you have a negative reaction should you decrease to 1.5mg?

I was diagnosed in the summer with MS and am currently not taking anything. I had a few weeks of double vision in the summer that led to the diagnosis and some spotty numbness in my legs/feet but nothing since the fall. I was taking Lipitor (my GP gave it to me after I took her some information), but I stopped taking it around Christmas. I didn't stop taking it for any real reason, I ran out, I'm not sure it was doing anything, the specialist at the MS clinic seemed ambivilant about the whole thing...

I had a MRI before Christmas and go back to the clinic in March when I expect to get the results. I really don't want to start a series of treatment with "hard core" drugs and needles and side effects and all of that if I can help it. If I have to go that route then so be it, but if there are other options that work...

If my GP will prescribe the LDN I'd like to go on it for six months and then have another MRI and compare the results from the most recent one. If there is no progression then it would seem logical to remain on the LDN and maybe have another MRI in another six months and take it from there...

Does anyone have any insight or advice?

Thanks.

Aylish
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Postby Chilcotin » Wed Feb 09, 2005 11:29 pm

Dear Alyish,

You may want to consider joining one or both of the Yahoo groups that deal with low dose naltrexone.

To join, go to www.yahoo.com and click on groups. From there the names of the groups you would want to join are lowdosenaltrexone and/or Spotlight_ldn. The first group has much more group activity than the first. There are people from all over the world in this group. You can post on there and you should get some replys.

Hope this helps.
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Hi Alyish

Postby robbie » Mon Feb 14, 2005 2:45 pm

Yes i do know of Smiths pharamacy, they compound LDN, unfortunatly my doctor won't prescribe it for me. I do know of someone else that gets it there and says they are good to deal with, he also says the LDN is helping and will continue to take it. Please let me know how it goes for you, i am very interested in this therepy. Rob robgates@sympatico.ca
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Hi Robbie

Postby Mary » Mon Feb 14, 2005 4:56 pm

Hi Rob

My doctor did decide to write me a prescription for LDN. I have been with her for quite a few years and in general she is letting me guide my treatment completely. There is a specialist I see at the MS clinic but he is not very accessible (about 6-thousand patients with the clinic and he is the only doctor). My GP is pretty open minded about alternative therapies and has prescribed Liptor for me when I took her research I found about statin drugs treating MS. She's just careful to vocalize that we have an understanding that I am trying 'alternative' treatment and that I have made the decision based on knowledge of the risk vs. benefits factor. I offered to sign anything she wanted to script that may protect her from a liability standpoint but she said that wasn't necessary.

Anyway, I ordered my LDN from Smith's on Friday and should have it within a couple of days...I'll update soon.

Aylish
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Hi Aylish

Postby robbie » Tue Feb 15, 2005 12:19 pm

Thanks for writing back, it sounds like you have a doctor that wants to help you. For such a low risk drug that can cause harmful side affects its hard to accept that my doctor won't prescribe it for me. I trully belive that he was advised by a specialist that only belives in the hi tec expensive drugs like interferon. This drug if it helps goes against all of the now common and very expensive drugs avaiable. I wish it was up to the person with the MS to decide what drug might help. Hope you will keep me and many others updated on how things go. It's nice knowing your out there doing what i want to try. Rob
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Postby CCmom » Wed Feb 16, 2005 7:02 am

Hi, Robbie. Have you tried with your family practitioner yet? I believe you are in Canada. There are alot more alternative docs there than in the states. I have one recommendation. Do not ask for LDN on the pretense that it halts progression. Say that you have talked to many who have seen symptom relief from it, and go from there. That way, your doc will feel more comfortable prescribing if your expectations aren't so high. Also, call any compounding pharmacy in your province or area and ask them if they are filling scripts for LDN. If so, ask them to give you the names of the prescribing docs. This works sometimes. You aren't asking for confidential patient info, so it should be attainable info. Good luck!

Great news, Aylish. Keep us posted on how you do!

Kim
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Postby Mary » Wed Feb 16, 2005 9:02 am

Hello again

Rob, I agree with Kim on approaching your doctor in the 'right' way. Of course I've been with my GP for several years so we know each other quite well, but I always go with info in hand. I don't really know or like the specialist at the MS clinic, I've met him once and felt like I was taking up a lot of his time with my silly questions, he has other patients to see and I never like it when the intern(s) are along for the ride. When I went to my GP for Lipitor and LDN I had print outs of info that I got online and I had started the search for a pharmacy for the LDN. I gave the GP a couple of websites she could visit and then I walked away for a few days, I didn't expect to get a prescription in hand on the first visit and it was a week later before we talked again and she agreed to prescribe. She said she wanted to talk to another doctor (which she didn't) and visit the sites (which she didn't..too busy), and maybe its because I've seen her for a few years so I had a sense of how to 'manage' her, but that's how I got the prescription. I was really quite nervous that she wouldn't agree and maybe she sensed the desperation too. I've said to her that I'm damned if I do and damned if I don't, there are no guarantees about any of the treatments (recognized or not), there is no cure and at the end of the day no one really knows anything about MS anyway, so what can it hurt....she tends to agree I guess.

Anyway, I hope you're able to find a doctor that will prescribe LDN for you. It makes me angry that you can't get it. You're the only one who is impacted, the doctor doesn't have MS. There are no real treatments, there is no cure so who is anyone to say that you can't try something, anything that may help you....

I started LDN last night (3mg). For some reason I was really nervous about taking it. I was a little restless around 5am but I could have brought that on myself by thinking about the whole thing so much.

I'll let you know how it goes....good luck to you!

Aylish
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HI

Postby robbie » Wed Feb 16, 2005 9:34 am

Thanks Aylish and Kim, It,s great to talk to people on the same page as i am. I am really looking forward to hearing back again, I did take lots of info to my doctor on LDN and he said he would read it. I never really expressed any hopes of the results. I just think if there is any possibility of it helping i want to try it, like Aylish says there really is no sure thing for treating MS, even the betaseron which i was on for 7 years is not somthing that was a sure thing. All my neurolight would say to me is that it's the best we have to give you. I am from the Toronto area and have contacted Smiths pharamacy about compounding LDN, all i need is a script from a doctor that realizes that it is my body and my MS and there is enough possitive information out there for me to think this is worth while trying.If you notice any improvement Alyish it's worth it! I will be looking forward to your posts. PS i will keep trying. Rob
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Postby CCmom » Wed Feb 16, 2005 2:26 pm

Here's another thought, Robbie. Have you talked to HarryZ on here? He is from Southern Ontario and his wife uses LDN, she sees a Canadian doc who happens to practice in Michigan and keeps his Ontario license and his US license. I think they use Smith's, as well.

I also know of two other Southern Ontarians who are using LDN, but they did a phone consult in the states and had it shipped from Skip's and I have a feeling phone consults are on their way out. But if you could get one and get about a years supply at once, that might be an option. OHIP won't cover, of course, and you'd have to pay cash. But US insurance doesn't cover phone consults, either.

Good luck!

Kim
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Hi

Postby robbie » Sat Feb 19, 2005 10:35 am

Hi Aylish Any news yet? I know it's early but i have heard of affects right away. Rob
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Postby Mary » Sat Feb 19, 2005 2:56 pm

Well, not much to report really. I started 3mg. Tuesday night and I've taken it around 9pm each night. I've woken up each morning around 5am but was able to go back to sleep no problem and I've had no trouble falling asleep either. I've been a little stiff but I don't know what to attribute that to. I've been starting back at swimming and was doing that for a couple of weeks before starting the LDN and have just progressed to quite a few laps so I could just be feeling the exercise. It's only mild stiffness, the sorta feel good exercise kind, not aching or anything.

I don't really notice anything, but I think in general my MS is relatively mild right now. I don't notice any difference in my balance or gait yet (and that would be nice because they're quite bad)..but I think I'm a weird case because I have that other disease (CMT) and that affects my balance and gait. I'm never sure whether its MS or CMT affecting my mobility. And I find winter terain much harder to get around on so again, it's hard to 'measure' right now.

I'm looking for something, anything to let me know its working...but then again no outward effects would be ok too if the next MRI looks good.

I guess I'll just have to wait and see. If I'm doing this correctly I think I'm to take 3mg. for a couple of weeks and then go to 4.5mg. and see what happens. If there are negative side effects you drop back down to 3mg., if there are improvements or no change then you stay at 4.5mg.

Do you (or anyone) know if that is the recommended dosage? I have that schedule printed out from a LDN website.

I'll definitely keep you posted. I've been keeping a diary to track what's happening.

Thanks for asking, I'll talk to you soon.

Aylish
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Postby CCmom » Sat Feb 19, 2005 3:25 pm

Good for you, Aylish. You're on the right track. Take the 3 mg for awhile and then try 4.5...Alot of people do their best at 3, when my son tries to increase to the 4.5 he gets an incredible amount of stiffness in his legs and torso and suffers severe insomnia, and it is uncomfortable enough that he has to drop back down. Although the optimum dosage for MS is listed at 4.5, I'm willing to bet that half the people using LDN are at 3 mg. I even know of a couple of people taking only 1.5, although that is thought to be of no benefit.

As far as seeing improvements, everyone doesn't. But, you also say that your MS is "mild" so if you don't see any problems or progression, you're accomplishing what you want to accomplish. My son was lucky in that he saw several improvements. Everyone doesn't. He had some residual damage left from early attacks that improved greatly. His fatigue, depression and heat intolerance also disappeared. But what we are mainly thankful for is how well he is doing overall on the LDN, and the fact that we haven't seen any progression since he started. He also experienced NO side effects from LDN when he started it, so you two are very lucky, although most say the insomnia is mild and transient.

One other thought...You might monkey around a bit with the time you take it to see if you get more benefits. Colby is 16, and he's not real consistent with his time, but has noticed that he feels his 'best' the next day if he takes it around 10...Alot of other people say that taking it at different times makes a difference for them, so you might stagger it here and there a bit, just no earlier than 9 p.m...

Please keep us posted! We're all in this together!

Kim
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Hi

Postby robbie » Sat Feb 19, 2005 4:36 pm

Good to read your post. I will be looking for your next one . I have not yet been able to get a Rx for LDN. I was wondering what CMT is? You said that also effects your gait and balance. Rob
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Postby Mary » Sat Feb 19, 2005 5:44 pm

Thanks Kim, I'll try taking it a bit later and see if that does anything. Like you say, as long as there's no progression its all good.

Sorry, I thought I had mentioned CMT in an earlier post. CMT stands for Charcot-Marie-Tooth (named for the three doctors who discovered it). It's relatively rare. I don't know much about it, it's a condition that affects the nerve endings of the muscles (or something like that), its hereditary (but it skips) and for me it really affects the way I walk. I have drop-foot big time! I can go over on an ankle really easily and I have bad balance and sadly have not seen anything but a well constructed sensible shoe for a number of years now. From what I can tell its sort of like MS in that there's no treatment or cure and people are affected differently. Although now of course I'm questioning everything and wondering if some of what I thought was the CMT was actually MS, you read so many people saying I was diagnosed at this date but think I was actually having symptons years before. Anyway, likely true that the MS was showing itself before but I just attributed it to the CMT. It sucks really. That's part of the reason I was so ticked off when I was told about the MS, I figured I already had my thing to deal with, I had my disease, no need to pile it on...but there you go.

Rob, Smith's Pharmacy seemed very knowledgeable and nice/approachable when I talked to them. The pharmacist knew exactly what LDN was (I had the feeling he filled a lot of prescriptions for it and knew what it was about). Can you talk to them and ask what doctors in the Toronto area are prescribing it? That's probably a huge no-no, confidentiality and all..maybe they can be ethical, legal and vague at the same time like such-and-such clinic has issued prescriptions for LDN....just grasping at straws I guess...what about Kim's HarryZ suggestion?
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Canada docs...

Postby JoyceF » Sun Feb 20, 2005 9:41 am

HI Robbie,
Hmmmm pretty sure I e-mailed you with some names of LDN friendly docs in Canada. Did you ever get that? I have a name in Toronto and one in Markham, if either of those are near you. There is also a doc at the University of Alberta. Let me know if you got the e-mail or am I just plain nuts?...lol. Joyce
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