Information requested for SPMS patient re: Rebif vs. Betaseron vs. Methotrexate

[DaveMcD50]

Originally Posted by hotflash

Hi Dave

I am not taking any of those drugs. I was diagnosed last March and have had four relapses since then. My right side is my problem mainly my right foot it has never gone back to normal and I still don't have feelings in that foot. I understand the walking problem as I can barely walk three blocks without having tingling and heavy foot, I need something or someone to hold onto. I am in a study group so I don't know what meds I'm on, it is either copaxone or avonex or a combination of the two. I love the program because I get extra attention and I never have to wait for an appointment, I have an mri twice a year and it is all paid for by the study program. I have one large lesion on my brain stem and I just found out that I developed a new small lesion on the top right side of the brain. The good news is that the large lesion is starting to resolve itself. I have started doing yoga specifically designed for ms patients with limitations or in a wheelchair maybe that will help your wife. See if your wife might qualify for a study program as they watch you like a hawk and they really listen to every thing you say without acting like you arebothering them. I think its because you might be on a new drug and they want to make sure your not having new symptoms GOOD LUCK!!!! hotflash

[DaveMcD50]

Dear Hotflash ... thanks very much for responding to my post! My wife had been asked to participate in a study group and had given it serious consideration, but decided this course of action was not for her. However, it does sound that it is right for you. I wish you the best of happiness and success in obtaining the optimal care and treatment that will allow you to have a long, productive and rewarding life! Thanks!!! - Dave

[hotflash]

Dave

Thank you, and I hope and pray the same for your wife. I think she is a very lucky woman to have a man in her life who loves and cares about her sooo much.

hotflash

[DaveMcD50]

Originally Posted by LUV2DANCE2

Dave,
My MS path sounds very similar to your wife's. I was diagnosed in 1990. Very few problems. In the past 10 years the same minor symptoms I had were getting worse, although the MRI's showed no active lessions. I was on Avonex then switched to Rebif when I started declining. Both have not been tested on SPMS, so after a few years I decided not to take Rebif. At my next appointment I am going to discuss Betaseran with my doctor. Good luck to you & your wife.

[DaveMcD50]

Originally Posted by LUV2DANCE2

Dave,
My MS path sounds very similar to your wife's. I was diagnosed in 1990. Very few problems. In the past 10 years the same minor symptoms I had were getting worse, although the MRI's showed no active lessions. I was on Avonex then switched to Rebif when I started declining. Both have not been tested on SPMS, so after a few years I decided not to take Rebif. At my next appointment I am going to discuss Betaseran with my doctor. Good luck to you & your wife.

Hi Luv2dDance2 ... I obviously haven't mastered the Reply protocol yet! :>)

Thanks very much for your response to my post. I went back and read your own post of a couple of months ago. Your situation does indeed sound similar to that of my wife. She has been doing quite a bit of research on her own and she is now leaning towards a startup on Betaseron. I don't know when your next appointment is, but suspect that my wife may have already started this treatment by then. If there is anything that she learns or experiences re: this treatment that I think might be of benefit to you I'll pass it along.

It sounds like they started you on Avonex right away after your being diagnosed? Is that true? If so, how long were you on it and did you have any adverse side-effects or experiences besides the obvious failure of the drug to retard the progress of your condition? Also, it isn't quite clear to me if you stopped the Rebif because it was not retarding your progression any more than the Avonex, or just that you were unsure of its effectiveness for treating SPMS because of a lack of clinical evidence of such. If you care to clarify this for me I would really appreciate it!

Again, thanks very much for having taken the time and effort to repond to my post!!!!

- Dave