MS Drugs – Who’s Using What?

No more MS drugs for me LDN research trust, no more side effects!!!

hi my son is 12 years he has MS I am very worried about my son ,what I know that the MS affect the people aged between 18 and 40 ,what the percentage to attach him and what happen in future. thanks

Currently I don’t use a DMT. That’s not to say I don’t put anything into my body to try and ward off the negative effects of MS, because I do. Much of what I do or don’t do is in an attempt to alleviate the ill effects of MS.
I am a 47 year old male, diagnosed with SPMS in 2012, April, right around my 43rd birthday. I knew nothing about MS. I was given pamphlets of DMT’s and told to pick one. I injected Copaxone for a year and then Tecfidera for about 9 months. I continued to progress in disability. The medical office told me my disease was active and they wanted to put me on a more aggressive treatment; Tysabri. After blood tests it was discovered I was positive for the JC virus so treatment with Tysabri never came to fruition.
My relationship with the medical office treating me has become nonexistent over the last couple years. I went on disability, stopped working, covered medical costs changed and I haven’t seen the neurologist who diagnosed me or the nurse practitioner who was overseeing me since. In thinking about a DMT to use I wish I had a doctor in whom I trusted. A doctor I could talk to about what the hell is going on in my body and what might be best to introduce into it. Until then, I trust other MS’ers, others in the MS community, friends and family.
It seems DMT’s might stop progression and are more prone to stop relapses. I don’t experience relapses, just a continual downhill slide. So until I find a doctor with whom I can communicate truthfully about my condition I will probably forgo DMT’s. Not that I wouldn’t take one, because I would, but is it really the best thing for me and my condition? I don’t know. And I have an inability to find a doctor who might assist me.

JE

Is there anything out there that works on progressive MS. Any experience with rituximab. I am taking aubagio but it seems not to be doing anything and my dr. has suggested rituximab.

My daughter was diagnosed with RRMS about 13 years ago. She has been on a Avonex until very recently when her neurologist said she has done so well and her MRIs seem to be almost normal (This is basically what she has told us. ) She tells me neurologist took her off MS medication altogether because she doesn't need it , and Will schedule an MRI every six months and to see her neurologist to confirm progress. She's an adult and lives far away and she does not want to discuss MS with me.
I was (surprisingly) diagnosed three years after my daughter. No other close relative ever had MS and I know of. Obviously there is a inherited gene somewhere unless it's the fact that we both grew up as children in the same city. My neurologist suggested Copaxone because it has less side effects for many,and I would not need monitoring blood tests. That appealed to me except for the idea of injections but I have manage using the injector for about 10 years ( over a year now on the 3x/wk.) I would love to take something like a pill, but I read a lot about medications and I don't want to take any chances of antibody build up.
I've had the same neurologist at
all this time. I can't say I have a close relationship with him but he's OK. He feels that since I've been doing so well that I don't need an MRI and I have not had one since diagnosis. I understand from reading and talking with a neurologist on a telethon info session that this is not the standard; on the other hand once in a while it would probably be good idea but I'm just as happy with no additional co-pays or appointments; I see him about once a year now. He may end up ordering MRI when I see him soon; he made mention in the past couple appointments that it has been a while but not pressing enough to order one. From what I read, I question whether there is an overkill onthe for amount of MRIs ordered especially if a patient is doing well. I have read that the correlation between symptoms and MRI results are not always dependable. In other words, if Active lesions show up the MRI, a patientmay show no symptoms or if the MRI shows no active lesions there may be symptoms. That's what I have read and heard anyway. There still a lot of unknown information yet to learn and a lot of research that still needs to be done. I think the cost of medications is extremely high even for those who do not qualify for additional help.

@Itasara: I am sorry to hear how your efforts to communicate with neuro doc left you with negative rather than positive validation. I agree with and enjoyed reading Ed's posts to you. Socially, the slower thought processing speeds that many of us with MS experience are a challenge. I can arrive at an appropriate answer; I just need more time to respond, which sometimes prompts some folks to try and "help" me find words. In an appointment setting, pressured by time constraints, I have developed a system where I make bullet points to guide and prompt my discussion during a visit. I have developed hand signals with family to encourage them to let me have time to talk. Feeling condescended to or diminished is negative and unpleasant. Especially when positive communication is so important and beneficial.
@Ed: I appreciate your communication and writing style. Thank you for sharing your experience, opinion and knowledge in an informative and compassionate manner.

So is an update to my last visit a couple days ago, my neurologist said that my progress of the last 10 years has been excellent. In fact I'm doing very well and so he doesn't need to see me for another 18 months unless I have a problem based on his experience with MS patients over a course of 10 years who have done extremely well and not getting worse in terms of disability.He felt that I did not need to stop taking my Copaxone because I am doing well. Still makes me wonder about my daughter who is not taking her meds/her neurologist. So I asked him about MRIs and he said for me there was really no reason to do one because he would not do anything differently. Clinically, I would have to agree with him that until there is a real reason to do an MRI but it's not gonna make a difference in treatment. I want to call your attention to an email I got from the multiple sclerosis association about a recent committee meeting in September of ECTRIMS- European committee for the treatment of multiple sclerosis. In committee met recently in London and the report was a summary of some of the studies that were done. This one in particular you might find interesting; I repost it here:
"Treatment Early in the Clinical Course----
Researchers from Sweden presented a series of 639 individuals who were diagnosed with MS from 2001 to 2007 and followed on average for 8.25 years. They found that for every year of delay in starting treatment, these individuals had a 6.7-percent greater risk in developing neurological disability. Put another way, people who started treatment three years after MS onset, had an almost two-and-a-half-times risk of developing disability compared to those who started treatment within one year from when their symptoms began. This study highlights the importance of recognizing MS symptoms as soon as possible and starting treatment shortly afterwards." You can find some of the other summaries at the website: myMSAA.org/news/ECTRIMS-2016-summary

It makes me wonder for those like my daughter who have been on medication for 13 years and then stopped, and if she were to go back on meds at some point would the above statistics also apply to her? Again so much is a known about the phenomenon of multiple sclerosis.