Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 ee, It's a tough question because it's different for everyone. Were you stiff to begin with? If so, you may not see a reduction in stiffness. I was stiff for a long time before starting LDN, and I'm still stiff. Some days are worse than others. I do believe that I have more good days than bad, and the fluctuation of pain and pressure may not be as bad as before. The most improvement that I have seen is in regards to bladder issues, which as far as I am concerned are about the worst symptom. I also don't feel like I am spiraling downward out of control anymore. LDN has given me hope. Marcie (PPMS) In a message dated 4/12/2004 12:52:00 AM Central Standard Time, halfassed@... writes: Subj:[low dose naltrexone] Second Asking Date:4/12/2004 12:52:00 AM Central Standard Time From: halfassed@... (ee) Reply-to: low dose naltrexone low dose naltrexone Hi.. I asked a question on here but didn't get a reply, really. I don't think anyone was intentionally ignoring me, it just became another topic before my question was answered. I am starting LDN either tomorrow or Tuesday night, at 4.5mg. (I was on it before but quit due to stiffness in my legs). How long does the stiffness generally last? Has anyone else had that problem? Is it common? Should it happen again, should I just ride it out.. for how long? Thanks again, ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Leg stiffness is common among people with MS taking LDN. Lowering the dosage to 3 or even 2.5 MG sometimes helps. With some people the stiffness tends to go away with time. For many of us it doesn't. I put up with some leg stiffness because it is the lesser of many evils. At least the rest of my body seems to operate more properly now. B. I have been on LDN now for around a year, with no relapse nor significant progression. And I don't hurt all the time anymore! ----- Original Message ----- From: ee low dose naltrexone Sent: Monday, April 12, 2004 2:51 AM Subject: [low dose naltrexone] Second Asking Hi..I asked a question on here but didn't get a reply, really. I don't thinkanyone was intentionally ignoring me, it just became another topic beforemy question was answered.I am starting LDN either tomorrow or Tuesday night, at 4.5mg. (I was on itbefore but quit due to stiffness in my legs).How long does the stiffness generally last? Has anyone else had thatproblem? Is it common? Should it happen again, should I just ride itout.. for how long?Thanks again,ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 ee, The only thing I can do for you, is tell you about myself, not everyone is the same, but....When I first started LDN, almost 2 yrs ago, I, too noticed more stiffness in my legs than usual. I called Dr. Bihari, and was told to decrease my dose from 4.5 to 3.0 mil. to see if that helped. The stiffness subsided, but as time went on, I was not feeling "as good" in all areas as when I was taking the 4.5. Calling back again, Dr. Bihari suggested I go back to the 4.5. Once starting back on my beginning dose, I no longer had the constant stiffness I did before. I still have my days, but then again, I DO still have MS....although its not an every day battle anymore! I've remained on the 4.5 since, and am doing quite well. Maybe a decrease will help you too. What dose are you on now? And have you tried a smaller dose as of yet? Just a suggestion! I hope you're going back on the LDN this time helps. Stay hopeful! I know LDN has completely changed and given me my life back. Hang in there! God Bless Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 My daughter had leg stiffness when she started - she is on 3mg. It lasted long enough for her to get concerned but after a few months has pretty well gone away. She still has a problem when she sits in certain positions, and her legs go straight out. Or when getting in a car she quite often has trouble bending them. After she relaxes for a few minutes they usually settle down and can bend. As everyone seems to be saying, this is a very lesser problem and the benefits of the LDN far, far outweigh the inconvenience of stiffness!Bonnie>From: "ee" <halfassed@...> >Reply-low dose naltrexone ><low dose naltrexone > >Subject: [low dose naltrexone] Second Asking >Date: Sun, 11 Apr 2004 23:51:16 -0700 > >Hi.. > >I asked a question on here but didn't get a reply, really. I don't think >anyone was intentionally ignoring me, it just became another topic before >my question was answered. > >I am starting LDN either tomorrow or Tuesday night, at 4.5mg. (I was on it >before but quit due to stiffness in my legs). > >How long does the stiffness generally last? Has anyone else had that >problem? Is it common? Should it happen again, should I just ride it >out.. for how long? > >Thanks again, > >ee > > Enjoy 25MB of inbox storage and 10MB per file attachment With MSN Premium Get 2 Months FREE* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Hey ee, I tend to agree with the general consensus as to stiffness, but like , it's the lesser of two evils. For myself, personally, feeling some leg stiffness is great! Strange? No. Before, my legs were numb, and " feeling " some stiffness means that the sensations of being " able " to feel has returned. The numbness was a real pain, and if I banged some- thing, I got a bruise and didn't know where it came from. If I banged into something sharp, well, red stuff leaked and I couldn't feel that either. Not all of the numbness has gone away, but it is better and....sigh....I still have MS. :-) Hang in there! Have a Great Day all! Jim (ms) ----- Original Message ----- From: " ee " <halfassed@...> <low dose naltrexone > Sent: Sunday, April 11, 2004 11:51 PM Subject: [low dose naltrexone] Second Asking > Hi.. > > I asked a question on here but didn't get a reply, really. I don't think > anyone was intentionally ignoring me, it just became another topic before > my question was answered. > > I am starting LDN either tomorrow or Tuesday night, at 4.5mg. (I was on it > before but quit due to stiffness in my legs). > > How long does the stiffness generally last? Has anyone else had that > problem? Is it common? Should it happen again, should I just ride it > out.. for how long? > > Thanks again, > > ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 > I tend to agree with the general consensus as to stiffness, but like , > it's the lesser > of two evils. For myself, personally, feeling some leg stiffness is great! Well I have some spasticity now, and the more I walk, the stiffer I get, with shooting spasms and pains. Last time I tried LDN I gradually got stiffer and stiffer till I was taking baby steps. If this happens again I'll try to ride it out. The whole " difficulty walking " was rather new to me then, now it's been over a year I've used a cane (foot drop and the aforementioned problem).. (and still no diagnosis) so I'm on my own as far as treating it. I'm personally convinced it's MS because of the pattern of it and the things it affects (including memory and speech on occasion), but all MRIs and LPs are clear as a bell, NOTHING shows up at all. Anyway, I'll give it a shot and see how I do.. I do remember last time I took it I was on vacation alone, and slept till 2 PM!! Wasting a whole day of vacation sleeping in!! I woke up and could not believe the time. I'll remember to bring an alarm clock this time! Thanks for the replies. ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 I had my compounder make my LDN in 1.5 mg caps since the script is for 4.5 at night he just changed the label to take 3, now I had a real bad time when I went down to 3 but hey I still think it is a good idea for anyone not sure what is just right for them, then you can experiment going up and down to find your dose, without getting new scripts, and if anyone wants to trade some 4.5 for 1.5s let me know, I am never taking anything else but 4.5 and I am not skipping days either, maybe in a few years but this is what's right for me. ZilNever give up, never surrender Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 ee, rather then taking the 4.5MG for months and months before you feel any difference. Why not try to get another script for 2.0. Just a FYI I have two scrips. One for 1.5 the other for 2.0 This way I have a choice ranging 1.5., 2.0, 3.0, 3.5, 4.5 With me it helps to change the dose all depending on my stiffness and ability to sleep! Thus far. I've only used the 1.5 and 3.0, but it's nice to have the choice. Good luck! (SPMS) From: ee [mailto:halfassed@...] Sent: Monday, April 12, 2004 2:51 AMlow dose naltrexone Subject: [low dose naltrexone] Second Asking Hi..I asked a question on here but didn't get a reply, really. I don't thinkanyone was intentionally ignoring me, it just became another topic beforemy question was answered.I am starting LDN either tomorrow or Tuesday night, at 4.5mg. (I was on itbefore but quit due to stiffness in my legs).How long does the stiffness generally last? Has anyone else had thatproblem? Is it common? Should it happen again, should I just ride itout.. for how long?Thanks again,ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Hi my stiffness lasted for 87 days. I'd change the dosage form 3mh to 4.5mg and back again. Now at day 11o I have no more stiffness --- In low dose naltrexone , " ee " <halfassed@a...> wrote: > Hi.. > > > > How long does the stiffness generally last? Has anyone else had that > problem? Is it common? Should it happen again, should I just ride it > out.. for how long? > > Thanks again, > > ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Johanne, That's so encouraging. For the last two nights I've reduced the dose from 4.5 to 1.5 to see if it would help the stiffness. I do feel better, but I'm on vacation and more active than my usual sit at the desk routine. So who knows... I'll go back to 4.5 and hang in there. Thanks for the encouragement. ----- Original Message ----- From: " Johanne F " <johannef@...> <low dose naltrexone > Sent: Tuesday, April 13, 2004 3:07 PM Subject: [low dose naltrexone] Re: Second Asking > Hi my stiffness lasted for 87 days. I'd change the dosage form 3mh > to 4.5mg and back again. Now at day 11o I have no more stiffness > > > > Hi.. > > > > > > > > How long does the stiffness generally last? Has anyone else had > that > > problem? Is it common? Should it happen again, should I just > ride it > > out.. for how long? > > > > Thanks again, > > > > ee > > > > > > Quote Link to comment Share on other sites More sharing options...
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