Done with Copaxone

[Mummy76]

So I guess I'm done with Copaxone after less than 2 weeks!  My neurologist is concerned because I started itching shortly after the first injection so she wants me to pick a new DMD...  I haven't a clue which one to pick.  I'm sad too, I just want to stop the MS from getting worse and I feel like taking a break while picking a new DMD is not good :(

[candy158]

So sorry that yoyu have to switch already.  I am almost a week now on Copaxone, and seem to be doing ok......

Let us know how you make out with something else, OK?  cause we night need help if this doesn't work for me, but, itching I don't have,and am hoping it will be ok.

Keep in touch, and good luck,
*hugs*
Candy

[Mike_Shuswap]

Hi Mummy. I've been on Rebif for 20 months now with no major issues. Some miner flu like sx's for awhile, but now as long as I take a couple Tylenol extra strength before injecting I have no side effects usually.

I'm not sure if you stated where you live, but if in Canada or the UK you can use the Rebismart to inject, which makes thinks a little easier.

DiannaKw, you're correct, there is a potential for depression as a side effect. I never had this problem, but you should be aware of it so you can react accordingly if needed. This may be a potential side effect of all the CRAB's, I not sure.

Mike

[sllowe]

Hi Mummy,

Sorry you have to switch. I'm on Rebif if you have questions once you dig, please ask anything. Mike S is on it too, and hmm I have to look at the list to see who else.

Initial side affects weren't bad for me. And, 5 years out pretty much non-existent.

[DiannaKw]

Yes, I'm covered by AB Blue Cross Non-group. All the way. No questions asked.

I just started Rebif, (like, literally two hours ago) and I'm a little worried about the potential for depression as well, considering I too have been there. I spoke to my nurse about it when she came over today, and she actually said she hasn't heard of Rebif causing depression (she could just be a little "out of touch", though. who knows)

I guess I'm just going to do my best to pay careful attention to my emotional heath from here on out, and if I recognize myself heading into that dark place again, I'll need to reach out and do something about it. That's the plan.

[doublevision1]

actually it doesn't matter whether your private plan is Blue Cross or not, you should ask about the program regardless.  Even if it's not BC so the plans can't be linked, it's still better to pay for your meds out of the provinical program than your own plan and leave that lifetime limit in case something else comes along requiring expensive meds the govt doesn't cover.  

Am curious, did you have a co-pay for your Copaxone with your private insurance?

[doublevision1]

mummy - did the MS clinic talk to you about applying for your Copaxone through the program I mentioned?  I have private insurance too, but when I chose my DMD (first one was Rebif) it was just part of their process for my neuro to apply to this program.

It isn't means-based, all MS patients in AB who meet the medical criteria can have their DMDs covered, provided they carry AB Blue Cross non-group.  I think the quarterly premiums are about $100 now.  If I didn't have private employer group insurance, the most I'd pay is $30 co-pay per month.  Because my other plan is also Blue Cross, the two plans are automatically linked so I have no co-pay.  

If your own private insurance is also Blue Cross, and if they cover Gilenya (if that's what you switch to), you should ask about this program as you're entitled to it.  Even if your own insurance covers it and has no co-pay, drug plans typically have a lifetime limit, usually not a big consideration since it's usually higher than any of us (in Canada) will pay for meds.  However with a chronic disease diagnosed at a young age, and expensive drugs that one may take their whole life, plus possibly requiring other drugs for other conditions in future, that lifetime limit becomes more of an issue.

[Mummy76]

I'm a bit worried about the interferon's as I read one of the side effects is depression, and I already suffer from that...

[Guitar_grrrl]

I'm sorry this didn't work out for you, Mummy.  The other CRABs work well, too.  When I was on Rebif, I found it easy to inject, I remembered to inject each time (my nights were Sunday, Tuesday, and Thursday), with minimal side effects.  Unfortunately, I was allergic to that one (rare), but others have had great success with Rebif.  Betaseron and Avonex have good track records, too.

Let us know what happens...

[Mummy76]

I have coverage through private insurance, but I don't know if they cover Gilenya or not.  

[doublevision1]

mummy and DiannaKw: are you both getting your DMDs funded through the provincial MS drug coverage program?  It covers Avonex, Rebif, Betaseron, Copaxone and Tysabri for patients enrolled in the AB Blue Cross non-group insurance plan.  I see no mention of Gilenya online; don`t know if that means it`s not covered or that the online info isn`t up to date.

[DiannaKw]

either = neither

[DiannaKw]

Ugh, that really *****, mummy. I remember how disappointed I felt after *finally* choosing a DMD (Copax), only to discover a prevalent potential side effect I wasn't willing to deal with. On the bright side, Rebif was my second choice from the beginning anyway, so I didn't really have to agonize over making a decision again. I don't mind the extra blood work that's required, and I'm keeping my fingers crossed that my liver can handle it and I don't develop anti-bodies.

I start tomorrow night, and I'll probably be on here soon afterward, letting you all know how it went!

For some reason, either Gilenya or Tysabri were discussed or even presented to me as an option at my MS clinic. I'd be oblivious to them if it weren't for online research (you guys in particular)

Hopefully Gilenya will be a available for you, if you'd ultimately like to give it a go!

[Mummy76]

Hmmm... have just been reading about Gilenya... it sounds so promising.  I may ask my neurologist about it and see if she would be okay if I took and and call my insurance company and find out if it's covered.

[Mummy76]

i do wonder if the itching is just a symptom of having MS but the nurse said it wasn't common and since it started around the time I started the Copaxone, she thought there was a correlation.  I'll be interested to see if the itching stops now that i've stopped the Copaxone.  It's a shame though as I was doing so well with the injections with no other side effects!

I am interested in Gilenya but from the little I've read, it seems to affect your immune system and with two little ones who always seem to be sick, I'm not sure it's an option for me.  But I need to look into it further.

[doublevision1]

here's ess's post about stopping Copaxone:

http://www.medhelp.org/posts/Multiple-Sclerosis/Copaxone-and-I-are-history/show/499491

[Lulu54]

I love seeing someone else's fingers type totally different words than the brain is saying to spell.

toasted is pretty similar to towards, isn't it?  

My brain -hand connection goes in spells where it does it a lot.  

I can't help with the interferon choices - I was ohttp://www.medhelp.org/posts/Multiple-Sclerosis/Done-with-Copaxone/show/1718131#n copaxone and switched this year to tysabri.  Good luck with the research.

[doublevision1]

aw that's s*cks, mummy!!  you barely had a chance to get started.  one of our long term members, essdipity, had the same problem with the itching and switched to either Rebif or Avonex.  Good luck in your decision.  Was Gilenya offered as an option or just the interferons?

[bettebelle]

I'm pleased with Avonex for what it worth ;)

[Mummy76]

Toasted = towards!

[Mummy76]

The neurologist has left up to me to choose my DMD.  I'm leaning toasted Rebif but am worried about the side effects.  I need to do a bit more research first!

[Sidesteps]

I am really liking Avonex.

I took my third dose on Saturday and I can honestly say I don't think I had any side affects. The only thing I noted was waking a few hours into the night and being a little sweaty but nothing worse than what a light workout; otherwise, yesterday felt no different than having an "off day."

I also think I read somewhere that Avonex works faster as well. I think Copaxone takes about 6 to 9 months to show it's real benefits whereas Avonex is a few months. I wish I knew where I read that. Hmph.

[figuerpa]

I hope you find what works for you. I have itching with my Copax shots too but nothing drastic. Glad your neuro is trying new ones to see what works. You will be on another med in no time.

Have you narrowed down which one you are thinking about? Has your neuro mentioned any that he/she would like to try?

Take Care, Paula

[JaneK1975]

Too much itchy, huh? Don't worry too much about the brief break. You're on track to find something that works for you, and that's the important thing. A few weeks or even a couple months is very unlikely to make a real difference in your disease course.

Which DMD are you leaning towards?

Hugs,
Jane