Relapse

[Katypadiddle]

I just had my first relapse since being diagnosed 7 years ago. I had been taking Tecifedera, which I loved. No side effects, kept symptoms away. But my neurologist said it was time to change since he felt like my jcv numbers and white blood cell counts were changing. Last March I started using Copaxone. Now I’ve had a relapse. Would I have had a relapse no matter what med I was on? Or do I need to change meds to keep relapses at a minimum? I go see my neurologist tomorrow. We’ll see. I thought I was good with this disease, but after having this relapse I’m not sure I am. I need to understand that this disease will progress. And I’m having a hard time with that.

[greaterexp]

Copaxone is one of the lesser efficacy DMTs, so I would sure ask your neurologist about something else after this new relapse. Do your own research to see what you would feel at least mostly comfortable taking and check into efficacy of them. What works for one doesn't hold true for everyone, of course, but you'll go to the neurologist well-informed for your discussion.

I hope you find a very effective med that you can tolerate and one that will kick MS in the behind.

[rjoneslaw]

I was on Tecfidera from 2016- Jan 2019 I switched because I ended up in the hospital for 2 weeks because I couldn’t walk, the dr wrote in my notes that I should switch to O then I was put O after 30 days of being off Tecfidera because that’s how long it takes for it to leave the body

I just had my 1st full dose yesterday Jan 1, 2020 and everything went smoothly

I basically slept the entire time

[Kenu]

How long do you have to wait going off copaxone to start O ? Ken 🐾🐾

[bxrmom in reply to Kenu]

Kenu There isn't a 'washout' period from Copaxone. I was on it for MANY years (both doses) and when I switched to Tecfidera, I didn't have to wait. I was told there was no wash out period for it. Hope that helps

Jessie

[hairbrain4 in reply to bxrmom]

I agree. I was also on Copaxone both doses & went straight to Ocrevus with no waiting period.

[Katypadiddle]

Neurologist is sending me for an MRI and we’ll see if there are new lesions. If there are, we change meds. If not, the Copaxone is working.

[kandykone1 in reply to Katypadiddle]

I am currently on copaxone too. Almost two years. I have my annual MRI next week. If any changes I’m changing immediately.

[bxrmom]

Katypadiddle Copaxone was the first dmt I was on after being dx with MS in 2006. In the beginning, I was having relapses all the time. They finally stopped after 2008 but I had to switch rxs because my inj sites were not going away like they did in the beginning and I asked my Neuro if I could switch to Tecfidera. I may be having to switch again if my white cell numbers don't come back up after my next blood work. Though I did test positive for jcv and my numbers are pretty high at .92 though I know others have tested highter.

[kandykone1 in reply to bxrmom]

I’m

On copaxone almost two years and my injection sites are not getting better. I don’t know how much longer I’ll

Continue

[bxrmom in reply to kandykone1]

I even adjusted the number I was using on the auto injector and that only helped a little at first.

[mrsmike9 in reply to bxrmom]

My 1st med was Copaxone and after a fairly short time I got swelling, redness and itching every single place I'd ever given myself a shot every time I injected. So I was told it was an allergic reaction and switched me to Tecfidera which made my white blood count drop like a stone. Then I was put on Aubagio which has been, for me, perfect. Easy to take. No bad reactions. Staying pretty stable. Works for me!

[bxrmom in reply to mrsmike9]

That's great news mrsmike9 that Aubagio is working so well for you

[kandykone1 in reply to mrsmike9]

That’s great news! Hope if I switch I have the same news!

[kandykone1]

What was the relapse? I’m so sorry. I am learning too still. To my understanding it’s usually cause you’ve had breakthrough due to the DMT you’re taking. 😞

[Katypadiddle in reply to kandykone1]

Numbness in my feet. They are freezing 🥶. And so far it hasn’t gotten any better. The numbness goes up to my waist, though I don’t feel it unless I’m touching an area that is numb. It’s less evident than in my feet.

[Neworleanslady]

I was diagnosed ~7 yrs ago. Started on Tecfidera and changed to Copaxone because of my wbc count. Dr switched me to aubagio, still doing Copaxone injections while waiting for aubagio to get here (waiting bc of insurance, copay card, etc)

[Katypadiddle in reply to Neworleanslady]

Sounds familiar 😒. Dr wanted me on Aubagio but insurance wouldn’t approve it and it took so long for them to approve the Copaxone that I didn’t have any meds for 2 months 😳😩

[Allen5280 in reply to Katypadiddle]

Hello Katypadiddle , my name is Allen. I've been dealing with the insurance denial issues for quite awhile. I c po uldnt get anywhere with them until my MS specialist/neuro would go to bat for my medications. When insurances said no to me it took a few weeks and he had them singing a different tune altogether. It has gotten even better once he placed me with a care management company called Heritage Biologics and Humana for my meds. Now I get approval letters a month in advance for Ocrevus. I dont know if your doctors office had tried to appeal on your behalf? If not it might be a good question. Just a thought from someone who's been there before.

[carolek572 CommunityAmbassador]

I was on Copaxone but switched to Tecfidera due to the injection site reactions. Then I switched from Tecfidera to Ocrevus because Tecfidera wasn't very effective for me. Now, being on Ocrevus is good for me but I have had issues with the insurance companies every single time. I am happy that my doctor has always resolved all insurance issues, but I am always apprehensive before any infusion because it seems that insurance company always tries to deny it.

[hairbrain4]

Copaxone worked for me for several years. O my due reactions. I changed to Tecfidera for 2 years but had a bad relapse so I went back to copaxone. I was still having site reactions but no relapses so I changed to Ocrevus. I'm doing great on O. After a 1 1/2 years I don't have relapses or any MS problems other than cognitive issues but no cog fog. The summer heat or winter cold hasn't set off any relapses like they used too. I've heard a lot here about insurance problems getting DMT meds approved. Ocrevus isn't covered under the drug pilicies. It is covered under the medical procedures part of insurance. There is help out there from the drug company that makes it.