Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
The human body is just as finicky because there is so much to the treatments that can only be discovered through trial and error. And what may have worked for one person may be a total dud for someone else.
Just hang in there and don't give up because so much of what your treatment is may totally rely on trial and error.
I was on Avonex for about 2 years. Was still getting sick for two days each week. Doctors noted that per the MRI's I was not getting a slow-down they had wanted to see. So, I got switched over to Tysabri. According to the MRI's while I was on that, the disease did show a slowing down, (at least somewhat).
I had to quit being on Tysabri, due to a move to a different state, and change doctors. I was given an MRI 6 months ago, and the dr. I was seen by then, said that the disease is in a Rebound Effect, meaning that the disease has kind of tried to jump ahead of where it was at. Meaning the lesions are in a more active mode than they ever have been.
I have not been able to get back on any med. due to my finances, but the dr. said, I need to! I know that while I was on the Tysabri, MS was getting slowed down.
As of the last MRI, I had 3 x's more active lesions than I had when I was on a drug treatment.
So, in my opinion, yes, the drugs do slow down the progression. At least in my case.
I just need to get back on something!
I started on Copaxone, but experienced an allergic reactions to it, so I had to stop it. I went to Avonex too, and it was horrible for me. Do a search on Avonex and see what most folks say about it. It seems most folks suffer side affects like me, intolerable ones. I wonder, did your neuro discuss going on Gilenya with you? or Tasabri? I left Avonex and went to Tysabri. Been there for 14 months and was quite pleased. Became JC Virus positive, with a history of melanoma, so my neuro stopped me immediately from Tysabri just Wednesday (so I'm still in shock) , and wants to put me on Gilenya. Just can't handle the injectables. So Good Luck to you in your big change. Too bad Copaxone wasn't doing it's job any longer. If you can, come back to this thread and let me know why your neuro didn't offer you something other than an injectable? I would love to hear what your doctor said, especially since I am making a switch too. Thanks - Lynne
My neuro feels that if there's no negative change in my condition, there's no need for additional MRIs. They would just show the same thing.
I refused her meds and went on natural/alternative medicine. It's not a cure but obviously side effects are minimal :) I was deteriorating so fast on all of the drugs I tried it seemed hopeless and my neuro constantly confirmed it. I would be in a wheelchair and unable to walk SOON, the flares constant, the pain to ridiculous levels (TN, ON, the works)
There is hope off the meds--you just have to be brave! (And strict very strict with diet, supplements)
And people react differently to the different drugs. I got more lesions on Copaxone but only on it one year. 10 years on Avonex did not do much but I only had migraines as a side effect.
My Dr. should have tried something else. But I did all I could do and really could not get the help I needed. I don't know why - a lot of carelessness here.
You never know what your outcome will be so keep trying. If you are in RRMS you want to try as hard as possible to stay there
A recent article I posted said with all the med options out today it is likely MS can be treated as a chronic disease.
Link: http://www.nytimes.com/2011/12/27/health/new-drugs-raise-hope-for-patients-with-ms.html?_r=1&nl=health&emc=healthupdateema6
Good Luck. Stay positive.
Melanie
M
Hugs,
Tammy
I wish you all the best as you travel this wild and crazy road of MS.