Dear Barb:
Best of luck.
CCF Neuro MD
Thanks for the replies. We have decided to go with the copaxone. It works differently than the interferons so we are hoping for better results. We just visited her at college over the weekend and she seems to be having a lot of the same sypmtoms as her last attack only not as severe. I just got the paperwork to get switched to the copaxone so we are anxious to get the ball rolling.I'll be back later and let you know how things go.
To the mom whose son has MS I know how hard it is to watch your son suffer and not be able to do anything for him. If you want to you can email me at ***@****
Take care
thanks for the comments.
CCF Neuro MD
Hi Barb, here is an online forum in which your son can converse with many MS patients. I am not one of them but it appears very supportive. Also, they poll each other to as what is working and such. It may be of some support, check it out.
http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Multiple+Sclerosis&number=59&DaysPrune=10&LastLogin=
Barb-
I am biased, but here is what I think. I am a 25-year-old female, and have been taking Copaxone for a little over a year. From what I have learned from friends that take Avonex or Betaseron, Copaxone has much fewer side effects. The only problem I have are temporary lumps, due to the shot. Otherwise, I have no problem. Of course, Betaseron is supposed to work as well. Good luck.
My son got MS at age 20, is now 22. He recently switched from avonex to betaseron after suffering his 4th major exacerbation in two years. I really can relate to the dilemma, Barb. My son gave up all dairy and gluten products and eats low fat, because I told him to. He faithfully injected his medication every Friday, yets hes now left with drop foot right side and severely reduced vision in left eye. This combined with balance problems, he falls over regularly. Last exacerbation he was very depressed, hostile in fact and screamed at me I'd ruined his life making him give up bread and not a day went by when he didn't miss a slice of toast. He said hes permanently hungry and sick to the teeth of taking 62 vitamins a day. Am I doing the right thing, I really feel at this stage I've done more harm than good. Maybe hes right, hes gaining disability and if his life is shortened then I am to blame for making what life he has miserable.
So far so good with the betaseron, but its only month one of the med so very early to say. Like every rainbow, I follow it in hopes of that pot of gold. God bless and you're not alone.
Dear Barb:
I hope the change helps.
CCF Neuro MD
Well my daughter just emailed me and told me she woke up this morning with a numb hand. She is so frustrated. She is convinced the avonex is not working and wants to switch as her neuro suggested. She's only been dxed for 18 months and she really takes care of herself, good diet and exercise. So I will talk to the dr. tomorrow and make a medicine change. Not sure what it's going to be, but she wants to try something else. She doesn't care if she has to inject daily, she just needs to feel like she has some control over this ugly disease.
I would double check your sources as the application is currently at the FDA and not officially approved.
CCF Neuro MD
Novantrone was recently approved by the FDA with flying colors for relapsing remitting MS and progressive MS. That may be another avenue to check. The shot is given every three months.
Dear Barb:
The use of the beta interferons are a really great addition to the treatment of MS. Whether one works better than another, is unfounded by any tests. Drug companies will not run trials in this comparison because there are not enough MS patients who have not been diagnosed to make a double blinded study, there are just too many patients needed to come to a significant statistic. The limiting factor on either of the two preps of beta interferon is antibody produced by the body against the injected interferon. It seems that both forms produce antibodies and maybe betaseron produces more of the antibody, but I imagine it is very individual. One needs to test for the formation of antibody as the dose will need to be adjusted. Although both are intereferons, the avonex is more alike the human interferon and therefore a different dose is needed for optimal efficacy. Copaxone is a completely different type of medication and one recent study suggests that in an animal model that combination therapy with the intereferons do not add any benefit. Whether this will hold in human trials is likely never to be really known. There is a new medication on the horizon, just put before the FDA after a impressive clinical stage III trial.
Now, would I switch medications if this was my daughter. My answer is purely biased, (I have no investment gains to what drug used) but I would stick with avonex and make sure the antibody titer is not high. But, you must work with your physician concerning medications.
Sincerely,
CCF Neuro MD