I am on Copaxone.
I have appt with neuro tomorrow to talk about why that choice was made and what are the other options. I know there are several others but they never talked to me about it and gave any explanation.
I keep reading and hearing how being aggressive at the beginning may be better for me several years down the line. I am not against staying on it but need some understanding why dr thinks this so the best choice.
Hi Tulip77😊I'm on tecfidera & so far no s/e !
But I need something stronger, like I was 👀 looking for was edibles- of course , nothing else matters- just like the the song , Stevie Nicks.... Ooh baby ooh, ooh.
Your MS sister, 🙏💓Lisa💕
Wow, that is so wrong that your neuro did not discuss other dmt options with you. He probably felt it was the best choice because it has been around for so long and has a pretty safe track record. Is your neuro an ms specialist? My first neuro wanted me to start with copaxone also. Then I went to a neuro who specializes in ms. (You MUST have an ms neuro!) She wanted me to start on Tysabri but I was JVC positive and didn't want to risk PML. She also suggested Rituxan but I went with copaxone for a year and a half and developed new lesions in that time. I am now on Ocrevus. I wish I had chosen a more aggressive dmt to start with. There are so many new dmts since I was diagnosed. Good luck with your choice.
Yes my dr is a MS specialist. I was diagnosed in the middle of
Covid, over the phone, so that is probably part of the problem.
As greaterexp says below it is easier to get insurance approval for copaxone. Some insurances companies require that you have been on another dmt that did not stop relapses before they will approve one of the newer dmt's . Ocrevus is not one of them, at least not with my insurance. It is considered a 1st tier ms drug.
I’m on Copaxone, too, but I think it was a decision based on its very good side effect profile and that insurance would approve it, rather than its efficacy. However, I haven’t had a relapse since starting it.
I love the safety of it, but am worried that being too safe now may be a mistake long term.
I wonder if I just happen to have a very low activity MS, rather than the Copaxone being really effective. Guess I'll never know the answer to that.
I am so glad you are asking about it! I am on Kesimpta now, a recent switch from Ocrveus. I won’t know how I’m really doing until I have another set of MRIs, but the Ocrveus was effective.
Hi Tulip77 I was on copaxone for 3yrs. It worked, until it didn't.. now I'm on Ocruvus and not really having better luck.. ☺️All DMTs are designed to slow the progression of MS down! Not stop it, or cure it. I'm sure your neurologist took alot into account such as blood work, when giving you copaxone! Hang in there! 🤗💕🌠
I started on Copaxone in 2006 and was on it until 3 years ago because I was running out of locations to do (even with the 3 times/week injections). My neuro at the time gave me info on the meds at the time (I think there were 4 back then) and let me choose. I had chosen Copaxone as it had the least amount of side effects. I am now on Tecfidera. My neuro is watching my white cell count as that has been dropping. I have to redo bloodwork next month to check the levels to see if I need to stop for a little while (fingers crossed I don't have to). Good luck to you. Keep us posted.
I was on Gilenya first but relapsed after 6 months. Then Rebif for a year with new symptoms. I didn't have any side effects from the Gilenya but with Rebif had the injection site reactions and flu like symptoms if I forgot to take Ibuprofen when I injected. Went on an Ocrevus clinical trial after Rebif which was in 2016 and have been on it ever since. I don't have any side effects from it other than the first few times my lymph nodes in my neck were tender for about a week but not really bothersome and hasn't happened for a couple years now. It is supposed to increase your risk for infections but I haven'thad one. I get blood work 2 weeks before and 2 weeks after each infusion. Because I haven't had any new lesions since 2016 I only get MRIs every 2 years now. I like that it is only twice a year. I don't like taking pills so prefer this.
Lots of options now. I think there have been 3 more DMTs approved since Ocrevus too.
I wish I still had my level of function when first diagnosed but have more weakness and have decreased sensation pretty much all over my body but is worst in my feet. My foot drop has gotten a little worse too so got an AFO brace that helps a lot. I really need to get back on track with exercising to help with all of it. So keep exercising as much as you can to maintain what you have 😁
The insurance companies decide by what they cover as to which med you will get. For example, copaxone is the first (it did not work for me), so I went on to Tecfidera and it worked for quite a while but then all of a sudden the side effects went brutal. So, as the Dr. put it you have to FAIL on Copaxone and Tecfidera BEFORE they will consider you for Ocrevus, which I am now on. So, just as it was expected decades ago, insurance tells your Doctor what they can do, that includes surgeries. Now, who is the real Dr. here? I'm done venting....
I started on Tecfidera years ago. Stayed on it 1 year with big decrease in wbc. Got on Copaxone, then glatirimir (generic Copaxone). Im on that now and have been for 7years. Recently got new lesion so I’m waiting to schedule Ocrevus infusion. It’s already approved by my insurance so just waiting out the 2weeks after my shingles vaccine. Also, i had a very unsuccessful 5-month stint on aubagio up in there.
It's up to you to decide your medications. Or I should say insurance company. I have had my best results in years on Ocreves. If you want the best you need to ask for it.
If the Copcxane is do it's job there is no reason to change.
I took copaxone at first because it has the least side effects. That may be why they want you to try it first. I was on it for a couple of years. Now I am on Mayzent it is working good. The only thing about Copaxone is the shoots I started having problems . The pills are much easier.
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