NeuroTalk Support Groups - Deciding you are DONE

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- - Deciding you are DONE (https://www.neurotalk.org/multiple-sclerosis/90077-deciding.html)

Yep, LA, I quit Copaxone over a year ago (took daily shots for 9.5 months). I just got tired of it and wasn't convinced it was helping. I've been taking LDN for 10.5 months now. I like it much better.

Good luck to you with your new Neuro! :hug:

I was on Betaseron for 5 years, and, it sort of got to the point where it just felt like something I did before bed, like brushing my teeth (only it was just every other day).

Since switching to Copaxone, my side effects have increased, for awhile, to the point where they were not very bearable. I have decreased the fx and injection sites. Although I continue to dislike Copaxone, it has become much more tolerable.

I encourage you, if Avonex is not tolerable for you, to consider other options, such as Betaseron, Rebif, or Copaxone.

To me, delaying progression of the disease is just too important to not be on a med. For me, fx and severity of flares are also a concern.

I have concerns about LDN, but won't go into a long tirade here. However, I believe that it only claims to help with symptoms, not delaying progression. Glad, though, that it appears to be helping Judy.

~ Faith

Here's a good article about LDN if you're not familiar with it:

http://ms.about.com/b/2009/04/20/low...-sclerosis.htm

Excerpt from above article:

In case you have not yet gotten caught up in the talk surrounding LDN, here is the lowdown: Naltrexone is an opiate agonist, and at the usual dosage of 50 to 100 mg, is used to help people stop abusing alcohol or narcotics (opioid drugs). Low dose naltrexone refers to the “off-label” use of naltrexone at a fraction of the usual dose, which is thought to help MS through a possible variety of mechanisms, including increasing sensitivity to endorphins, reducing inflammation and/or reducing production of free radicals. This has the following (reported) results among people with MS:

* stops progression of multiple sclerosis disability,
* prevents relapses, and
* reduces MS symptoms.

IMHO you never give up and admit defeat - that's just too much.

I've had long times of doing nothing (PPMS responds to little), Gave up Rebif after 2 years, it was doing nothing, swear it made me feel worse than MS- gave me more MS like symptoms, non - ambulatory so they wouldn't let me in Fingolimod clinical trial, but tried. Trying 4-AP soon (non-FDA approved but my neurologist will prescribe -- must be done by a compounding pharmacy - Will try LDN next if this doesn't help - not a great success with PPMSers. If Neuro won't prescribe, bet nice PCP will. Not going out of country, but if stem cell becomes available will try. If nothing is left, will stop until next thing comes. MRIs are bad for me (hate them, I spazz and negate process), not much help (duh, I know I have lesions, loss of walking shows all the progression I need to know) so won't do anymore. But while I make decisions for me, take breaks, I will never give up. Me and Don Quixote (it was a book and musical!!) jousting with windmills. "To dream the impossible dream" the song goes. Yes.
0)

Not giving up....just done sticking a needle in my muscle. I need other options.

LA

Quote:

Originally Posted by kicker (Post 524968)

I stopped sticking needles in me. Wasn't helping. So on to the next thing I believe in and want to try. after this it could means days or years of a break - depends.