Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 The only thing that I can really say was a 'side effect' was sleeplessness for about the first 3 weeks. After about a month, that eased up. Now, I sleep anywhere from 5 - 8 hours straight. (That hadn't happened in 5 years - it is wonderful!) I have had drastic improvement in bladder control. (I would say 75 - 80% improvement) I had stiffness/pressure in my legs to begin with, and this has persisted, although it doesn't seem to fluctuate quite as much. I have been alternating the doseage, 3mg vs 4.5mg, to try and determine whether that makes a difference. So far, I can't put my finger on anything there. LDN has offered the only earthly hope in my fight against MS! I'll take what I can get! The Bible tells me that by the stripes on Jesus' back I am healed! Recently, I had a do-good pastor tell me that I may not be healed in this life, but I would be in the next life! (Duh! There is no sickness or disease on the other side!) I answered him with a line from 'To Kill a Mockingbird'. Miss Maudie was talking to Scout about the foot-washing Baptists and the Methodists, and she said that some men are so worried about the next life, and they don't even know how to live in this one! I want to live in this one!! LDN has given me a chance. I believe that a higher power has given us this knowledge, and we would be crazy not to use it! Let's learn and live in this life!! Marcie In a message dated 3/27/2004 9:39:06 AM Central Standard Time, jsgarvin@... writes: Everyone is different. Hmmm. Personal experience: a little sleeplessness, went away after 3-4 days, didn't notice any stiffness like some, legs were already stiff, now I just feel it better :-) side effects side effects....better bladder control? better balance? clear headed finally. less pain, burning sensations way down, easily tolerable. I started at 3mg for the first month, went up to 4.5mg, haven't noticed any difference really. That's it for me. Welcome, and good luck! Have a Great Day Jim (ms) ----- Original Message ----- From: "jplaxen" <jplaxen@...> <low dose naltrexone > Sent: Saturday, March 27, 2004 6:01 AM Subject: [low dose naltrexone] Side Effects > I've had MS for over 3 yrs. Can someone clue me into the side > effects, if any, of Naltrexone? > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 On Sat, 27 Mar 2004 14:01:52 -0000, you wrote: >I've had MS for over 3 yrs. Can someone clue me into the side >effects, if any, of Naltrexone? > In my case I get abdominal cramps and my leg muscles won't relax if I take the 4.5mg dose. I'm not too bad on 3.0mg but I usually only take 1.5mg Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Everyone is different. Hmmm. Personal experience: a little sleeplessness, went away after 3-4 days, didn't notice any stiffness like some, legs were already stiff, now I just feel it better :-) side effects side effects....better bladder control? better balance? clear headed finally. less pain, burning sensations way down, easily tolerable. I started at 3mg for the first month, went up to 4.5mg, haven't noticed any difference really. That's it for me. Welcome, and good luck! Have a Great Day Jim (ms) ----- Original Message ----- From: " jplaxen " <jplaxen@...> <low dose naltrexone > Sent: Saturday, March 27, 2004 6:01 AM Subject: [low dose naltrexone] Side Effects > I've had MS for over 3 yrs. Can someone clue me into the side > effects, if any, of Naltrexone? > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Steve if I may ask you a question? I see you are taking 1.5mgs ldn. Are you getting the results from that amount that you are happy with? Or are you using it only as a preventative measure, rather than take 3.0mgs to maybe fix up some symptom or other? I hear ya when you say 4.5.mgs. are way too much I too encountered very bad stiffness at that amount but 3.0mgs seems to agree with me just fine.And the longer I stay on 3.0 mgs. the better I feel. What I can't understand is why people with M.S. wouldn't want to try this rather than get all those painful and costly shots ? I guess until the day I die I will always wonder "Did they really want to be better or not" Now of course this is only my opinion but when a drowning man is thrown a lifepreserver and he refuses to grab it , he just wants to drown. Reg. -------Original Message------- From: low dose naltrexone Date: 03/27/04 07:46:47 low dose naltrexone Subject: Re: [low dose naltrexone] Side Effects On Sat, 27 Mar 2004 14:01:52 -0000, you wrote:>I've had MS for over 3 yrs. Can someone clue me into the side >effects, if any, of Naltrexone?>In my case I get abdominal cramps and my leg muscles won't relax if Itake the 4.5mg dose. I'm not too bad on 3.0mg but I usually only take1.5mgSteve ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 On Sat, 27 Mar 2004 10:32:45 -0700 (Mountain Standard Time), you wrote: >Steve if I may ask you a question? I see you are taking 1.5mgs ldn. Are you >getting the results from that amount that you are happy with? Or are you >using it only as a preventative measure, rather than take 3.0mgs to maybe >fix up some symptom or other? > I started over a year ago on 4.5mg and have been reducing it ever since either by size or by frequency. The results with 1.5mg are the same as with higher doses but without the side effects. My MS is still progressive regardless of the dose I take but it may be a little slower. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Your hair and nails will start growing faster than you've ever had in your life. Your bladder urgency and frequency levels will change and may be better than even before the MS started acting up. Your RLS, if you have it, will get better. You'll be happier, less fatigued, and have a renewed interest in living. Those are the side effects that I know of. ----- Original Message ----- From: jplaxen low dose naltrexone Sent: Saturday, March 27, 2004 09:01 Subject: [low dose naltrexone] Side Effects I've had MS for over 3 yrs. Can someone clue me into the side effects, if any, of Naltrexone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Edith, I hope someone has some knowledge of ALS and MS and can give you information more specific to your needs. I have seen many posts about a period of sleepiness shortly after starting LDN. I had a couple of really sleepy weekends, and I also went through a period of extreme leg weakness which I associated with a flu bug that was going around. My legs are doing much better now, but were pretty shaky for a few weeks. It had me pretty worried. I recently reduced my dosage for a few days, and when I upped it again I became sleepy for a few days again. That may just be part of an adjustment period we have to go through. I don't have a guess what a reasonable trial period would be for you. Is there anyone here who has some knowledge of ALS and MS? (MS) ----- Original Message ----- From: " Edith " <edith@...> <low dose naltrexone > Sent: Friday, April 16, 2004 11:38 AM Subject: [low dose naltrexone] side effects > I'm on day 4 of LDN and find that my legs feel weaker and tighter, > and I'm sleepy during the day, which I wasn't before LDN. Since all > my symptoms are in my legs (weakness), it's hard to tell what's > being caused by disease progression (I have ALS) or the LDN. I am > starting to feel weakness in my right arm and hoped that LDN might > help slow that down. I don't have urinary urgency (I take DitropanXL) > and I still get up twice a night for the bathroom. How long do you > think I should give the LDN trial? > Edith > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 I'm glad to hear that I'm just not " strange " ...<S>....this is such an exciting phenomena---almost like being part of a science experiement...it's as though for the first time, we're telling the doctors something that they don't know anything about. I love it! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Maureen, I also am tired all the time, I thought it is because I basically am just starting to be able to do things other than sit and I'm really out of shape. The Xolair is really helping my lungs. I wonder if my tiredness is from being out of shape. I have alot of joint pain and stiffness, but I had these before the Xolair and thought they were caused by my physical activity. They mostly went away when I had to quit work and then I started prednisone and didn't have any joint pain or stiffness at all. I have been off pred for 3 weeks and it seem like every joint in my body has been hurting the last two weeks. I also have headaches, more like pain in my head off and on. This also did not start until I got off pred. But I wonder if all this is from stopping the pred, my Doctor had me do a real gradual taper. - - In , " m_convery " <m_convery@y...> wrote: > > > I have been on xolair for over a year now and while my lungs and > sinuses have improved dramatically I am chronically tired. My > doctor and the pharmacy (curascript) both told me that this is not a > reported side effect of xolair but I can trace it back to the same > week I got my first injection. Also, I found it listed as a side > effect on Medline Plus today. > > I would like to hear from anyone else haaving the same problem. I > don't plan to stop the xolair because of this (I am now off of > antibiotics and have reduced all of my meds by half) but still am > struggling to cope. > > Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 > P.S. You only hear about the BAD side of a drug, not the good side > or all > the people it helped because their lives were aided so much by it > that they > went back to leading a pretty normal existence. Yeah, I've pretty much given up reading about the horrible side effects (even though I do research the meds online.) After all, I HAVE to take these drugs or I'll end up completely crippled and in more pain than I'm in already. And I worry too much as it is, don't need to add more Quote Link to comment Share on other sites More sharing options...
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