Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 I would like to hear some first hand accounts from people who have had a positive experience with this treatment. My daughter has secondary progressive MS. She has tried four different drug therapies over the last seven years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 --- I am SPMS and have been taking LDN for 9 months. I take no other meds and the results have better than I could have hoped for. Email me for specifics. Steve In low dose naltrexone , " bufecky " <nanfeole@c...> wrote: > I would like to hear some first hand accounts from people who have > had a positive experience with this treatment. My daughter has > secondary progressive MS. She has tried four different drug > therapies over the last seven years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 My 16 year old son has only been using LDN for a month, and I'm sure there are more wonderful people here who can give you more info than I can, but here goes, anyway. I have the time on my hands so you get my 2 cents worth! My son was diagnosed 3 years ago, with RRMS. He has had some really severe exacerbations very close together in the past, so there has been some question as to whether he is RRMS or moving into a progressive mode. He used Avonex for one year with very little problems, but had one of the worse exacerbations he has had while on it. He was immediately switched to Rebif and used it for almost a year with disatrous result - severe depression, necrosis, very painful injections, etc... I started researching LDN 6 months prior to starting him on it. This place has been a wealth of information for me, and you will meet some of the most delightful and informative people you could ever possibly meet here. His neuro and primary care doc were unwilling to prescribe LDN, so we got it from Dr. via phone consultation. I must admit that the phone consult was more in depth than most face to face appointments we have had with the many neuros we have seen over the past 3 years. Dr. started him out at 3 mg. and he has done really well at this dose. We will do our 2 month consult in August and see what happens from there. To be more specific...My son didn't have that many problems, other than some residual tremor in his hands from the first attack, severe heat intolerance, and the severe depression brought on by the interferons. Since starting the LDN, he says he is sleeping better than he ever has in his life. His heat intolerance has disappeared completely, he is playing golf, skiing and working in tobacco - able to do all the normal things a 16 year old boy should be able to do for the first time in 3 years. His energy level is through the roof, and he has an overall sense of well being. The depression is completely gone, and he says that he feels like his old self again for the first time since before this all began. We couldn't be more pleased, as you can imagine. I hope this helps in some way! I'm sure there are others who will jump in and help you as well! Take care! Kim --- In low dose naltrexone , " bufecky " <nanfeole@c...> wrote: > I would like to hear some first hand accounts from people who have > had a positive experience with this treatment. My daughter has > secondary progressive MS. She has tried four different drug > therapies over the last seven years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Hi Chip, I was dx at 38 and I am now nearing 41. I have little in terms of side effects. As you I had bone/joint pain for a week or so at the beggining but nothing since. I am still doing all I was doing before, even got the go ahead from the drs to keep deep diving. I do take cml seriously and educate myself to know what's going on, but I enjoy a normal life. Best wishes, Marcos. On 8/8/07, Tracey <traceyincanada@...> wrote: > > Hi Chip, > > Welcome to the group. I was 31 when I was diagnosed and now I'm 37 so > as you can see, CML is no longer the death sentence that it once was. > > I remember having a charlie horse that could have killed a horse the > first week that I started Gleevec. It took a few more months for the > other side effects to start though....the eye swelling, diarreah, > muscle cramps etc. The side effects can get tiresome after years and > years but I always remind myself that it's a small price to pay to be > alive. > > Take care, > Tracey > > > > > > Greetings. I'm a 36yo male living in ton, WV. Diagnosed with > > CML on 7-12-07. Went in for annual physical and wbc came back at > > 89,000. As of today wbc is 11,200. Started 400mg Gleevec 2 weeks > ago. > > Just went through some excruciating bone pain and am feeling much > > better. Am back to work, at a very comfortable pace, and am just > > chiming in to say, " hello " . > > All the Best, > > Chip > > > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2007 Report Share Posted August 9, 2007 Hi Chip, I am a female diagnosed at age 35 (pre fda approval for Gleevec) I am now 42. The first few years the side affects were more than they are now but it was really hard to complain as I was on daily interferon shots and 10 days a month I took another chemo injection called ARC my first year prior to FDA approval of Gleevec. The shots helped me to maintain without progression but other than that they had no impact on my BCR-ABL. The shots were horrible to say the least. When Gleevec was approved in 2001 I switched immediately to 400 mgs and have been on it for 7 years now with no detection of the BCR-ABL translocation after only 60 days of taking Gleevec. I am fortunate to live a pretty normal life with the exception of having some tired times of day, I do require at least 10 hrs sleep and I still have muscle spasms sometimes but all in all I no longer think of dying and I am grateful for gleevec and this cml community. I believe I will live a normal life span. Whatever that is for me? And as time goes on I pray that you too will have the same results from gleevec and the same confidence about your future. There are really a great bunch of folks here that are very knowledgeable so share all you can to get the best support possible. Welcome, I am glad you found us but sorry you had to. ez Dx 5-2000 Quote Link to comment Share on other sites More sharing options...
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