Does anyone else here not take medication for MS? Or if you waited to start treatment, do you regret not starting sooner?
I'm about to start Copaxone, after being diagnosed 3 years ago, and I'm now having second thoughts. Should I wait and see if my MS gets worse before starting a treatment plan?
And I've read that Copaxone has lower rates of its effectiveness on MS. Will taking Copaxone (and the hassle of self injections) lower the possible progression of my MS?
Thanks for listening… read more
I've been on Copaxone for over 8 years now. No side effects whatsoever. Yes it does slow down the progression and that has been medically proven many times throughout the years. Please keep in mind this is a DMT which is a disease modifying treatment. it is not meant to help with the way you're feeling or any of your symptoms so you will not notice if the drug is working that will only be proven over time with the help of MRIs every year. Some people confuse DMTs with drugs that are supposed to make you feel better and to help with your symptoms. I was nervous about the self-injecting also but they give you an auto-injector and you hardly feel anything. I'm only able to inject my stomach and my lower back because my thighs and arms we're getting red and hot. I do 40 mg three times a week which is the most up-to-date preferred way and dosage to take. yes there are oral medications also but I've heard those are less effective Plus you should use whatever drug your doctor feels would work best for you. I hope this helps.
Starting a MS treatment without knowing we become science experiments when we make the decision to start any treatment to offset what naturally occurs with MS can make the whole treatment process unnessecarily frustrating. For me, like many others, Copaxone was only a minor nuisance and did calm some of MS symptoms but then it was time for me to switch. I never really understood why I should change until this hit me. No doctor or medical team can tell which of the now many treatments will work best for your MS and now we become a science experiment, that's not a bad thing either. What I mean is we are asked to try a medicine that has a track record of helping combat MS and hopefully it does just that but there's always the chance it won't. In which case, the experiment continues. You can opt to stay in the control group (take no medication and see what happens) and that could make the most sense for you or you could try a treatment and see if it works (believe me you will be constantly asked to take MRIs) and see what your medical team thinks. I see the positives of staying in the control group and of giving an MS drug a shot. For me, trying the MS drug route made the most sense and combined with a heathier diet and a constantly changing workout route I feel comfortable with the way I'm approaching fighting MS. I will tell you though, I'm on my fourth MS med attempt
I started Copaxone and then my insurance decided to not to pay for it. During my battle with my insurance I had a relapse. My MS attacked my optic nerve. I have issues with seeing. Lights, computer screens, TV causes pain in my left eye. I can not read for long periods. I can't read some print. No medicine helps the pain. Dark room and a heat pack is all that works. My doctor prescribed special glasses also. I wonder if I was still on Copaxone would I had to endure this horrible pain. I was able to go back on Copaxone 4 months later. Good luck.
Hard question since it's a very personal thing - and the most important thing is that we are each comfortable with the personal pathway we choose. In case it's helpful, I can share that I started with copaxone - wasn't a big deal - no side effects, and once I got the needle depth set correctly for each location, it wasn't even that painful. I was only on it just shy of a year - had my second exacerbation and copaxone was deemed a failure for me. I've been on tecfidera the past 2 years. That initially had more side effects (as well as the periodic blood tests), but I have found ways around all the side effects so they aren't an issue anymore. I do have an eventual goal of treating my MS fully homeopathically, but my DR wants me to go a couple more years with no new symptoms first (I'm at just over 2 years now). The good news is that I'm able to treat all of my MS symptoms homeopathically while only being on the one prescription drug and that's important to me. If you have any further questions about the homeopathic healing methods, I'm here! XX
Have you had any new lesions or symptoms since you were diagnosed 3 years ago? If so, I would for sure take a DMT. If not, you are very lucky to be so unaffected by this disease. That could, of course change at any time, nobody knows. I can see how it would be tough with no disease activity for years to all of a sudden start a DMT as a preventative proactive measure. But it's probably going to do you more good than harm, especially with Copaxone, which doesn't have serious side effects. If you absolutely hate Copaxone you can stop at any time, you aren't making a permanent decision. What does your doctor say?