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Discussion:
I need your opinions please
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Hi everyone, I have read discussions and wrote on a few of them before but right now I just really need some input. I'm asking for anyones opinion, the good and the bad. My husband has m.s. and has had it for almost 12 yrs. He has been taking Copaxone for a few years now and things were going fine....no significant problems. This last year however, he has begun to do much worse. He had an mri 8 months ago, which showed 2 new additional lesions. He just went in for another mri this month because he has just been doing sooo bad. Well, it showed 4, maybe 5 more new and active lesions and a few small other ones. Our concern is this, over the last 6 years he has had only a few lesions appear. Now all of a sudden he is having multiple new lesions in a short amount of time. His neurologist is taking on a new opinion that his ms is beginning to show signs of progression and is concerned. She wants to discuss at his next appt possibly changing meds to the Interferons. We have researched and researched the medications out there, finally settling on Copaxone because it seemed to have the least amt of side effects and problems reported. Now that she is wanting to change courses, we are a little scared. We have had people tell us not to take any medicine. We have had people tell us they are all bad. We are so scared and confused. I'm wondering if anyone can please, please write me and let me know what medicine you are currently taking, the pros and cons, and their honest opinion of it. I want to hear about any of them, Rebif, Avonex, Copaxone...any and all. Please tell me what you think of it, how you have done with it... I want to ease his fears and be able to discuss with him what you can tell me. We are really having a hard time handling his worsening condition and I just really need any help and advice you could give me. I really appreciate it. Thank you so much.
Posted on 02/17/12, 01:31 pm
20 Replies | Most Recent Add Your Reply
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Reply #1 - 02/17/12  1:35pm
" I take copaxone, but I have heard of people needing to switch meds after a while because their body becomes use to it. So maybe a new med can help him out "
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Reply #2 - 02/17/12  1:43pm
" yes- i agree with zombiechyk-lol love that name zomby!! well i went to gilenya, and i cant take it- my white count went so low- but it helps lots of people!! so-- its probably not working so well now-the copaxone- but keep him at ease with whatever you decide- no stress- that throws us in to a relapse quick!!! and some of it -the shots make some really sick- he is very lucky to have you!!! hugs!!! "
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Reply #3 - 02/17/12  2:17pm
" Hi alyflat,
I take Rebif and the only side effect for me is a fever and it comes the next day but is easily controlled, I'm not sure how well it is working yet just as I got to where it is supposed to start the fullest I lost funding and have had to go without for a bit but am starting again tonight.

The thing that seems to be doing the best right now for me is pulse steroids every 6 weeks, done in my home by a nurse. The only setback has been between the 2 when I get like a sinus infection it is hard to get rid of and I asked to go to every 4 weeks and also wanted a stronger dose because I'm at the low end of the dose because my very one was the strongest and did'nt quite agree with me so I agreed to the pulse with the lower dose and it gets easier and less side effects each time.

I said in another post about my lesions over 15 years I went from 3-5-8 and than from 08 to 10 I went from 8 to 40 lesions as like with this disease there seems to be no rhyme or reason to it, and it will do what it pleases with our bodies.

Hopefully if he moves to Rebif he will be one of the lucky ones and have little or no side effects, there are some other people here that have very little side effects, just make sure to pre medicate with something like Aleve, that seems to work better for a lot of some for some reason.
I hope this helps and ask about the pulse steroids, I'm glad my neuro suggested this, only big setback is nurse is not good at finding my veins so I got stuck 8 times in 2 days but the relief is worth it as I usually have a few good weeks afterwards. Good Luck
Take Care
Dave "
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Reply #4 - 02/17/12  3:40pm
" My hubby has been on and still is on Rebif (7 years). The side effects are red, raised and tender areas where he injects. He from time to time gets flu like symptoms. This would include a temp of 98-99, I know normal temp is 98.6 but his is normally 96.4 or so. This increased temp is a low grade fever to him and sometimes has the chills and fatigue. This happened much more often in the first few months of taking the drug. However, 1-2 times ever 2 months this still happens. He takes his shots at night before bed and with an ibuprofen to try and reduce the side effects.

There is some more drug info below, I wish you good luck in trying to research your options to find out which drug he feels more comfortable using next.
-EP
------------------------------------------------
CRAB Drugs listed by increasing effectiveness:
(As you can see Betaseron ->Rebif are pretty much about the same effective rates)
* Copaxone reduced relapses rates by approx 28%
* Betaseron by 31%
* Avonex by 32%
* Rebif (every other day shot) by 34%

The below drugs have been found to decrease relapse rates much more so than the CRAB drugs above. However they seem to have more serious side effects for some too.

Gilenya ( - heart probs in some, + oral med) by 54%
Tysabri (- PML risk, + once a month infusion) 59%
Novatirone 60%
Trial drug only: Alemtuzumab (5 day chemo drug infusion every few years) by 90%

more drug info on my subgroup, go to below URL for more info. http://www.dailystrength.org/groups... "
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Reply #5 - 02/17/12  4:42pm
" Thank you all sooo very much, your responses so far are great! I've read each of them a few times over! I will research more of what you wrote EP, and Dave thank you for what you wrote. I'm not at all familiar with the pulse steroids so will definitely bring that up at the next appt. He goes in first of March. Again, thank you all for taking the time to respond. "
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Reply #6 - 02/17/12  5:18pm
" I also was on Copaxone for several years when it started losing it's effectiveness. My doc put me on Rebif, but had to stop because any of the interferons cause major depression for me. They don't cause it for everyone, but it's definitely something to watch for. After the Rebif, the doc put me on Tysabri, which I have been on for about a year now with NO new lesions or MS activity to show up, just had an MRI a couple weeks ago. Best wishes to you and your husband!! "
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Reply #7 - 02/17/12  5:22pm
" I have been on Copaxone, Avonex and am now on Tysabri.

Copaxone worked for me for a while. I developed allergies to it.

Avonex was horrible for me. I lasted about 8 months on it. I was sick 2-3 days after my injection. I could not stand my life being on Avonex. For those reasons I went to Tysabri.

I've been on Tysabri for about 15 infusions (a little over a year, once a month infusion). I love love love it. The risk of PML is out there, especially if you are JC Virus positive (which I am), but the risks are so low that I count my quality of life above the low risks. It is painless, convenient, no daily or weekly injections, and I've done very well with it. In fact, my lesions have shrunk while on it! Please PM me if you want more info.

Good luck to your husband. There are more choices out there now than there ever were. It is expected that about 2 more options will be coming within the next few years too.

Your husband is lucky he has such a loving wife. "
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Reply #8 - 02/18/12  1:17am
" I'm very sorry he seems to be getting worse; but you know that nothing stops MS completely anyways; it just SUCKS.

Anyways, I was diagnosed with MS almost 14 years ago, and have been taking Avonex for about 9 of those years. I'm sorry but I'm never sure if it was 2001, 2002 or 2003 that I started it, and I have stopped the treatments for months at a time before too. (cause of it's side effects and the fact that I WAS in college and wanted to just party that whole week out with friends...)

Then in 2011 I was overly stressed with my father's heart attack/ trying to buy a house, my uncle's heart attack... and so I had at least 3 bad relapses where I used the mega dose of Steroids to stop things/ slow em down fast.

My neuro mentioned to me that "Maybe we should switch you to another/ different drug..." Then, that really sceared me more than this Avonex does; because he must be thinking of the newer one Tysabri right? That hasn't been out there as long as Avonex has; and people died on that one, I'm really sceard of it.

So I've really been trying to take the Avonex injections every week. I just NEED to have "enough" protein the day of the injection, have the vicodin and MotrinIB pills that day/ night and for the next day too and It's good enough.
The "Flu-like" side effects never went away for me; but the injections are only once a week. If I have enough protien (2 eggs along with a hamburger) for supper that night; and of course the vic and Iburophens really do help.
I usually do my injections about 8 p.m. Saturday's now that I'm out of college and all.
It's NOT even every month that I wake up at 4a.m. that nite and have to put on socks, booties, sweatpants and sweatshirts to sleep the rest of the night because of the "flu-like" side effects just freezing me to death.

I believe that Avonex has helped me stay somewhat normal even with my not staying consistant years ago in college. Right now, I can furniture/ wall walk at the house sure; and use the forearm/ canadian crutches when I'm out walking in public mostly. When I was diagnosed the nurses told me that I wouldn't be able to walk at all without any help after just 5 years, For me it was 2009 when I really started the furniture/wall walking so much, so that was 11 years.

Good luck with how life brings you, I hope you find something to help. "
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Reply #9 - 02/18/12  1:39am
" I was on avonex for 7yrs..hated the concept of injections n I got horrible achiness n a headache for side effects..a flare happened n my symptoms came full force..my doc switched me to gilenya..no side effects one pill a day..so far so good..I feel a bit better but I'm still in no position to do much "
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Reply #10 - 02/18/12  8:27am
" So far so good on the Rebif. I also take Provigil for the fatigue and I love it! "

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