Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Hi charlie, Dr. Bihari prescribes 4.5mg to his patient to start. then if you are having a problem, he suggest that you open the capsule and dump a little out. This is what I did and am doing great. I take about 4mg of LDN right now.Good Luck Marie ----- Original Message ----- From: <cscob@...> <low dose naltrexone > Sent: Tuesday, September 09, 2003 6:41 PM Subject: [low dose naltrexone] new > hi, > i am new to the list and have a question. is it wise to get 1.5 mg > capsules to begin with and just take two or three if i decide to up the > dose to 3.0 or 4.5 ? > i am going to use skips pharmacy and have e-mailed them for a 30 day price. > i find your comments very helpful. i hope this stuff works for me. > > charlie siracuse > cscob@... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 I, too, have just begun taking LDN for follicular lymphoma. My physician wanted my initial month's " trial " to be 3 mg, rather than 4.5 to see how I respond. I have had no difficulty, sleeping or otherwise - am on day 6. Would be interested to hear of others on LDN for this condition- Also, regarding fillers - I called my pharmacy, Village Apothecary in Manhattan, and they said they use no fillers in the 3 mg. capsule - it is just pure ldn powder. I assume that is better than with a filler, but would like to hear from others- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 Welcome to our group. There are many reasons for a positive rheumatoid factor, and a positive RF isn't conclusive of a specific diagnosis. RA and many other autoimmune diseases cannot be diagnosed with just blood tests. This page will explain the RF test and how it applies to autoimmune diseases: http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html I was on a prednisone dose pack when I had poison Ivy. It was wonderful for my joints, but prednisone is not a drug that you want to stay on for any length of time. It has side effects that can be worse than the disease. Some people have no choice, but if at all possible, it is better to stay away from prednisone. This page will give you more information: http://rheumatoid.arthritis.freehosting.net/drugs.html#prednisone Many in our group have used the dose pack and it is fabulous for helping manage flares. a > I was seen 2 years ago and dismissed... I found that I had 's > Disease. Well just last month I had a possitive Rheu factor.. > which would explain my aches, pains, swelling, fatigue etc... Well > the Rheu put me on Bextra, and Alivel (to help me sleep). I called > her this week because I couldn't even stand to walk on my tile my > feet hurt so bad. She called in a Predisone dose pack and ask that > I record how I feel. Has anyone done or tried this? What can I > expect? I can't get past the fatigue, stiffness, and pain right > now. I've been off work since March for numerous reasons and I > just can't see me returning right now in such pain and fatigue. > Any suggestions are GREATLY appreciated. > > THank you all, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 a, I understood from my Rheumatologist that I was diagnosed as RA. However, I have 's which is yet another autoimmune disease. I was just wondering if my response to the Predisone was normal. Swelling down but pain still there. > Welcome to our group. There are many reasons for a positive rheumatoid > factor, and a positive RF isn't conclusive of a specific diagnosis. RA and > many other autoimmune diseases cannot be diagnosed with just blood tests. > This page will explain the RF test and how it applies to autoimmune > diseases: > > http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html > > I was on a prednisone dose pack when I had poison Ivy. It was wonderful for > my joints, but prednisone is not a drug that you want to stay on for any > length of time. It has side effects that can be worse than the disease. > Some people have no choice, but if at all possible, it is better to stay > away from prednisone. This page will give you more information: > > http://rheumatoid.arthritis.freehosting.net/drugs.html#prednisone > > Many in our group have used the dose pack and it is fabulous for helping > manage flares. > a > > > > > I was seen 2 years ago and dismissed... I found that I had 's > > Disease. Well just last month I had a possitive Rheu factor.. > > which would explain my aches, pains, swelling, fatigue etc... Well > > the Rheu put me on Bextra, and Alivel (to help me sleep). I called > > her this week because I couldn't even stand to walk on my tile my > > feet hurt so bad. She called in a Predisone dose pack and ask that > > I record how I feel. Has anyone done or tried this? What can I > > expect? I can't get past the fatigue, stiffness, and pain right > > now. I've been off work since March for numerous reasons and I > > just can't see me returning right now in such pain and fatigue. > > Any suggestions are GREATLY appreciated. > > > > THank you all, > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 Swelling is part of what causes the pain in RA. When the swelling is down, the pain is usually decreased. Another thing that causes pain in RA is bone on bone pain when the cartilage is eroded away, and there is nothing to cushion the joints. Erosion is different with all of us. Some of us have very erosive diseases, others have a lot of swelling but not a lot of erosion, still others have little swelling but a lot of erosion. DMARDS are prescribed to slow down the rate of erosion. Have you had x-rays to see if erosion is present? I hope your doctor will prescribe DMARDS soon since research indicates that the earlier the disease is treated, the less damage is done. You can read more about DMARD's at: http://rheumatoid.arthritis.freehosting.net/drugs.html I hope your pain gets better. a > a, > I understood from my Rheumatologist that I was diagnosed as RA. > However, I have 's which is yet another autoimmune disease. > I was just wondering if my response to the Predisone was normal. > Swelling down but pain still there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 Welcome to the group! Sorry that you've not been feeling well. How is your 's disease being treated? [ ] New > I was seen 2 years ago and dismissed... I found that I had 's > Disease. Well just last month I had a possitive Rheu factor.. > which would explain my aches, pains, swelling, fatigue etc... Well > the Rheu put me on Bextra, and Alivel (to help me sleep). I called > her this week because I couldn't even stand to walk on my tile my > feet hurt so bad. She called in a Predisone dose pack and ask that > I record how I feel. Has anyone done or tried this? What can I > expect? I can't get past the fatigue, stiffness, and pain right > now. I've been off work since March for numerous reasons and I > just can't see me returning right now in such pain and fatigue. > Any suggestions are GREATLY appreciated. > > THank you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 I am on 25mg Cortef (steroid) and Florinef .05mg .. it seems to be out of control with all that is going on with my body right now. The RA doctor seems to think that the Cortef (steroid) kept things at bay for a long time and finally my body needed either more or needed additional help ergo.. RA > Welcome to the group! Sorry that you've not been feeling well. > > How is your 's disease being treated? > > > > > > [ ] New > > > > I was seen 2 years ago and dismissed... I found that I had 's > > Disease. Well just last month I had a possitive Rheu factor.. > > which would explain my aches, pains, swelling, fatigue etc... Well > > the Rheu put me on Bextra, and Alivel (to help me sleep). I called > > her this week because I couldn't even stand to walk on my tile my > > feet hurt so bad. She called in a Predisone dose pack and ask that > > I record how I feel. Has anyone done or tried this? What can I > > expect? I can't get past the fatigue, stiffness, and pain right > > now. I've been off work since March for numerous reasons and I > > just can't see me returning right now in such pain and fatigue. > > Any suggestions are GREATLY appreciated. > > > > THank you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Dick- Welcome - I am not familiar with MSM. I have had RA for over twenty years and thought I had either tried or heard of most treatments. Perhaps I know it by another name. Welcome again! > I am new on the list. I have had arthritis for about 13 years and it seems > to be well under control with Methatrexate, NSAIDS and MSM. The MSM seems > to be a very critical part of my treatment. I was as high as 7 pills a week > and still having swelling in my hands until I started taking the MSM and now > I am down to 4 pills/week and no real symptoms. > > Dick. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 I was a chemist in another life. MSM is methyl sulfonyl methane. My doctor says that she can not prescribe it because there have not been any studies done on it. There is no money to be made by doing them. However she also says that some of her patients are using it and since it obviously works for me to continue to use it. One of the reasons I joined the group was to see if other people have had any success with it. Re: [ ] New > Dick- > > Welcome - I am not familiar with MSM. I have had RA for over twenty years and > thought I had either tried or heard of most treatments. Perhaps I know it by > another name. > > Welcome again! > > > I am new on the list. I have had arthritis for about 13 years and it seems > > to be well under control with Methatrexate, NSAIDS and MSM. The MSM seems > > to be a very critical part of my treatment. I was as high as 7 pills a week > > and still having swelling in my hands until I started taking the MSM and now > > I am down to 4 pills/week and no real symptoms. > > > > Dick. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Welcome, Dick! Sorry that you've had arthritis for so long. What type do you have? [ ] New > I am new on the list. I have had arthritis for about 13 years and it seems > to be well under control with Methatrexate, NSAIDS and MSM. The MSM seems > to be a very critical part of my treatment. I was as high as 7 pills a week > and still having swelling in my hands until I started taking the MSM and now > I am down to 4 pills/week and no real symptoms. > > Dick. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 It is RA. At first they thought I had lupus. [ ] New > > > > I am new on the list. I have had arthritis for about 13 years and it > seems > > to be well under control with Methatrexate, NSAIDS and MSM. The MSM > seems > > to be a very critical part of my treatment. I was as high as 7 pills > a week > > and still having swelling in my hands until I started taking the MSM > and now > > I am down to 4 pills/week and no real symptoms. > > > > Dick. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi Dick, welcome to the group. It is a wonderful group, hope that you enjoy us. I am also fairly new, so just getting to know everyone. I am on Humira right now, and I believe it's doing some good. I have been on MTX, it didn't work well for me. I haven't hear of MSM, is that new? What type of arthritis do you have? I am glad to hear you are doing better, that is just great. Hope to hear from you, Tawny > I am new on the list. I have had arthritis for about 13 years and it seems > to be well under control with Methatrexate, NSAIDS and MSM. The MSM seems > to be a very critical part of my treatment. I was as high as 7 pills a week > and still having swelling in my hands until I started taking the MSM and now > I am down to 4 pills/week and no real symptoms. > > Dick. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi Tawny, I have RA. MSM is something I found on the internet. It is used as an anti-inflamitory in animals. I recently did a Google web search and there is some stuff on there about it. The MTX stopped doing the job for me (swelling in hands) and I tried the MSM on a whim and in about 3 days my swelling was gone. I've been able to cut the MTX dosage down quite a bit. (7 to 4 pills/week) My Dr. doesn't feel that we can go any lower. I would urge anyone to try it. I have never heard of any side effects with it. [ ] Re: New > Hi Dick, welcome to the group. It is a wonderful group, hope that > you enjoy us. I am also fairly new, so just getting to know > everyone. I am on Humira right now, and I believe it's doing some > good. I have been on MTX, it didn't work well for me. I haven't > hear of MSM, is that new? What type of arthritis do you have? I am > glad to hear you are doing better, that is just great. Hope to hear > from you, Tawny > > > > > > > I am new on the list. I have had arthritis for about 13 years and > it seems > > to be well under control with Methatrexate, NSAIDS and MSM. The > MSM seems > > to be a very critical part of my treatment. I was as high as 7 > pills a week > > and still having swelling in my hands until I started taking the > MSM and now > > I am down to 4 pills/week and no real symptoms. > > > > Dick. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 I will have to check that out, it sounds very interesting. I am so glad that you found something to stop the swelling, and to be able to do more. I have RA also, and have tried so many different meds that hasn't worked. So it is so great to here uplifting news, Have a wonderful New Year's, it is almost here, Tawny > Hi Tawny, I have RA. MSM is something I found on the internet. It is used > as an anti-inflamitory in animals. I recently did a Google web search and > there is some stuff on there about it. The MTX stopped doing the job for me > (swelling in hands) and I tried the MSM on a whim and in about 3 days my > swelling was gone. I've been able to cut the MTX dosage down quite a bit. > (7 to 4 pills/week) My Dr. doesn't feel that we can go any lower. I would > urge anyone to try it. I have never heard of any side effects with it. > > > [ ] Re: New > > > > Hi Dick, welcome to the group. It is a wonderful group, hope that > > you enjoy us. I am also fairly new, so just getting to know > > everyone. I am on Humira right now, and I believe it's doing some > > good. I have been on MTX, it didn't work well for me. I haven't > > hear of MSM, is that new? What type of arthritis do you have? I am > > glad to hear you are doing better, that is just great. Hope to hear > > from you, Tawny > > > > > > > > > > --- In , " Beal " <coach1@r...> wrote: > > > I am new on the list. I have had arthritis for about 13 years and > > it seems > > > to be well under control with Methatrexate, NSAIDS and MSM. The > > MSM seems > > > to be a very critical part of my treatment. I was as high as 7 > > pills a week > > > and still having swelling in my hands until I started taking the > > MSM and now > > > I am down to 4 pills/week and no real symptoms. > > > > > > Dick. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Whats the chemical name for this MSM and what dosage are you on? --- Tawny <tawnyokc@...> wrote: > I will have to check that out, it sounds very > interesting. I am so > glad that you found something to stop the swelling, > and to be able to > do more. I have RA also, and have tried so many > different meds that > hasn't worked. So it is so great to here uplifting > news, Have a > wonderful New Year's, it is almost here, Tawny > > > > > > > > > I am new on the list. I have had arthritis > for about 13 years > and > > > it seems > > > > to be well under control with Methatrexate, > NSAIDS and MSM. The > > > MSM seems > > > > to be a very critical part of my treatment. I > was as high as 7 > > > pills a week > > > > and still having swelling in my hands until I > started taking the > > > MSM and now > > > > I am down to 4 pills/week and no real > symptoms. > > > > > > > > Dick. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 just sent out an article on MSM. I take a heaping teaspoon morning and night when I take the rest of my meds. Re: [ ] Re: New > Whats the chemical name for this MSM and what dosage > are you on? > --- Tawny <tawnyokc@...> wrote: > > I will have to check that out, it sounds very > > interesting. I am so > > glad that you found something to stop the swelling, > > and to be able to > > do more. I have RA also, and have tried so many > > different meds that > > hasn't worked. So it is so great to here uplifting > > news, Have a > > wonderful New Year's, it is almost here, Tawny > > > > > > > > > > > > > > > I am new on the list. I have had arthritis > > for about 13 years > > and > > > > it seems > > > > > to be well under control with Methatrexate, > > NSAIDS and MSM. The > > > > MSM seems > > > > > to be a very critical part of my treatment. I > > was as high as 7 > > > > pills a week > > > > > and still having swelling in my hands until I > > started taking the > > > > MSM and now > > > > > I am down to 4 pills/week and no real > > symptoms. > > > > > > > > > > Dick. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Yes I do as well as sickness from mold as well/ Also MSC. Where you are isnt safe. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 /message/18425 Me too, but nobody believes it. Look at message 18425. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 , I just got home after being away a week. I got a diagnosis of cfs in 1995. Just this year I was further diagnosed with Lyme disease. I also have begun to realize that I am susceptable to toxins in contaminated buildings. One symptom I get is extremely high blood pressure only in poluted buildings. I have been on antibiotics for years for the mycoplasma, borrelia and babesia infections I have. I am now looking at treatment for neurotoxins. a Carnes ----- Original Message ----- From: Olson Sent: Sunday, January 11, 2004 5:04 PM Subject: [] new Hi I'm new I have been ill from Chronic Fatigue Syndrome for many years It went away for five years, when i lived in a all electric apt Now where I live there is mold, there is even some black mold on the bath room window I got CFS back after living here for on year, does anyone else here have CFS, please write, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Welcome, qscholar! Yes, I would be interested in reading the newspaper article. The best of luck with your groups. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New > Hi group, > My name is qscholar. I have been diagnosed with Lupus, Fibro, and > CFS. I live in fridged Michigan where it is a day to day chapter in > how I feel. After 2 years of having the same problems, I have learned > to adapt by getting as much rest as possible. > > I am co-facilitator of our local lupus support group. I was recently > featured in a newspaper article promoting lupus awareness. If anyone > is interested in reading it, I will post the url. I also have an > online lupus support group and a group for facilitators who would > like to share ideas, read about upcoming events with various support > groups and organizations, and to post urls and locations of local and > online groups. To be respectful to the moderator and group, I will > post the url in the links section of this group. Anyone is welcome to > join. > > I am so pleased to see that there are so many groups dedicated to the > support of what we all go through. > > Thank you respectfully, qscholar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hi , welcome. The advice to me was to be at least 2 weeks Betaseron free before starting LDN. I was 10 days without Betaseron when I started LDN. It went ok. Chey > I am new to this forum. I am wanting to start LDN, and I am > currently waiting for the pharmacy to prepare it for me. I am on > Betaseron and just read that the two are not compatible. Does > anyone else have any experience with this? > > Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi, and welcome to the group. Sorry for the reason, though. RA is not a bit of fun. For exercise, I ride the stationary bike. It's convenient, because it's right there in my bedroom, and it doesn't matter if it's raining or snowing or whatever. I try to do four miles most every day, which takes about 25 minutes. That's enough for this old lady who got her Medicare card in the mail recently, LOL. Before I get up, I usually do a few leg lifts and different leg stretches. Then while I'm waiting for my coffee water to heat up, I do some arm exercises and bend down and touch my toes. I can't really touch them until I get to number five or six. I had company this weekend so didn't do my exercises. Got to get back to them tomorrow because I believe they do make me feel better. Half an hour of walking is good. Just do what you can. Maybe later walk some more. You have to pick something that you WILL do. Sue On Monday, May 17, 2004, at 07:41 PM, heyjude42@... wrote: > I am new to this group and chat groups in general, so bear with me. I > was diagnosed with RA about two years ago. I have been taking > plaquenil and relafen and it seems to work ok. I have my days though. > My question is --what do people do for exercise? I was a real walker > before and I find that after half an hour my legs are fitigued. I do > low impact aerobics, but would like to do more. Any suggestions. I > am 53 and female. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 I work out at the gym. I never did any kind of excercise before having RA. I went and had a trainer show me the proper way to use the lifting equipment and if something hurt, I didn't do that one. When something did hurt, we tried other machines until we found one that worked that muscle group without hurting. Most machines I use do not require gripping tightly with my hands and none require pushing with the front of my feet, which I would not be able to do. Most handles just rest in the palm of your hand and when I use my feet it's my whole foot. I am especially glad I am doing this becuase I recently learned that my short-term, low dose usage of prednisone has caused osteopenia (1/2 way to osteoporosis) and weight bearing excercises plus lots of calcium is my treatment. I'm 33 by the way and have had RA for a year. I also work out on the elliptical machine because there is no impact. I have a hard time on the treadmill and walking because of the impact on my feet. The stationary bike is good too. My mom does that 6 days a week and she has had RA for over 20 years and has severe (nearly complete) joint damage. The other thing that is good is yoga or general stretching excercises. But I encourage you to try a few different things, you might be surprised what you can do even with RA. Jennie > I am new to this group and chat groups in general, so bear with me. I was diagnosed with RA about two years ago. I have been taking plaquenil and relafen and it seems to work ok. I have my days though. My question is --what do people do for exercise? I was a real walker before and I find that after half an hour my legs are fitigued. I do low impact aerobics, but would like to do more. Any suggestions. I am 53 and female. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Welcome to the group! Brisk walking is one of my favorite exercises, weather permitting.A half hour is fine! I have a cross-country ski machine which is easy on my joints but a very good workout. I also do weight training. If your hands will allow you to grip hand weights, Joyce Vedral has several good workouts. You can check out her site below or see if your library or bookstore has any of her books; you can skim through and see if the routines appeal to you or be possible for you. http://www.joycevedral.com/ I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New > I am new to this group and chat groups in general, so bear with me. I was diagnosed with RA about two years ago. I have been taking plaquenil and relafen and it seems to work ok. I have my days though. My question is --what do people do for exercise? I was a real walker before and I find that after half an hour my legs are fitigued. I do low impact aerobics, but would like to do more. Any suggestions. I am 53 and female. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 I have found that the water arthritis classes are amazing. The warm water is very soothing and forgiving. I can have a nice workout for people in pain with people that all understand each others limits! Judy Quote Link to comment Share on other sites More sharing options...
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