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Thread: Is anyone on or tried Aubagio??

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    Question Is anyone on or tried Aubagio??

    Hello, all. I haven't been on for quite a while. The computer and I have a limited relationship. But my doctor wants me to try Aubagio, while I am still on Avonex. I have been on Avonex since 1997. I am convinced I am still walking because of it - I have two bad relapses a year. But, I am getting soo down. I am very depressed and I cannot take antidepressants. Either my head blows off from migraine, or my stomach is shot. My preliminary look at what people say about this drug is from "I hate it. I'll go back to needles" to "I have no side effects, I love it." I've never had liver issues all these years with Avonex. I tried the other injectibles and couldn't tolerate them.

    To boot, I have a friend who wants me to go to Boston (where this very forum is) where her son is treated, to try Rituxan (and they are apparently working on stem cell). All insurance companies consider that drug experimental for MS unless you've run the gamut, or so I read mine.

    So, I guess that's a lot of stuff! Sorry for the rambling. (My MS has taken a toll on my UTI stuff, and I now have an e.coli bug they can't kill. Off to see infectious disease on 7/18. Doesn't it seem dumb to start a new MS drug with unkillable e coli?? Impressions anyone?)

    I wish everyone their best days and nights, with and without meds, and am putting the positive vibes out there....
    -Sue

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    Distinguished Community Member SalpalSally's Avatar
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    Hi Sue, so sorry for your illness. I'd get rid of that UTI, before doing
    or taking anything else!! Avonex can cause your depression and your
    depression may lead to your UTI. It's a vicious circle.

    Feel better soon.
    Last edited by SalpalSally; 06-28-2014 at 06:41 PM.
    Love, Sally


    "The best way out is always through". Robert Frost







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    Distinguished Community Member agate's Avatar
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    Hi Sue,
    I'm not clear about why you're going off Avonex. Is it the depression, or does the doctor think that Aubagio will be more effective, so that maybe you won't have to put up with the two relapses a year?

    Seems to me if you've been moderately contented with Avonex, why change?

    You don't say how long you've had the E. coli. Sometimes these infections are hard to get rid of. I had one that went on for 3 months and I've heard of people who've had them longer. I definitely wouldn't change MS drugs with E. coli still showing up, but I may be overly cautious about drugs.

    You've been on Avonex for 17 years? Congratulations! I lasted only 3 years on it.

    I believe at least one person here was on Rituxan. I did a search and came up with these threads where Rituxan is mentioned or discussed:

    http://www.braintalkcommunities.org/...earchid=150875

    Thanks for the update. I hope you'll find a good solution and let us know what's going on.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Default Hello..I have been on rituxan for a few years

    On my way out but I will give you a quick view...
    I did all three of the ABC drugs...after eight years I switched to IVIg for seven years. Did 140g a month which runs about $70,000.00 a month so your insurance company will not like it. ( the amount I did is way over what most people do so my great experience is a result of high dose?)

    I did Novantrone, monthly steroids, and something else too, I think.
    All the chemo drugs were great for me. kept me really functioning. With rituxan I am still farming! I take Ampyra too.

    I met a woman who does aubagio. We spoke quickly but she was quite happy with her results.

    If you have specific questions...keep asking! I test positive for the JC virus but decided to roll the dice. But your doc should give you that blood test if you consider rituxan.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    To all of you, thanks - I need to hear other MSers. I hope I am posting this right. Agate, I am very depressed and I'm pretty certain that at least part of it is the Avonex. I am now running high fevers after injection for a day and I'm sick for a good two days after injection. Sally, my UTI situation got progressively worse when I had a GP try to take me off of Baclofen - why? Don't ask. Within six months, I was having constant UTIs from extreme retention. I am on all the proper meds for it now, I catheterize regularly, especially at night, but I can't, even after a 14 day antibiotic course, clear up a UTI for more than 5 days. (Agate, I'm wondering why you went off Avonex?) (Thanks for all of the info, Linda, I am glad to hear someone's happy with the Aubagio. it sounds like you've been through the wringer. Good you're doing well w/ Rituxin.)

    I agree, Agate. After doing a ton of research on Aubagio they say do NOT NOT NOT start it with any kind of infection going on, since it is an immune suppressant. My doc was sort of hey, no big deal. Well, big deal to me. Don't know what the e. Coli treatment is going to be yet. I appreciate you all. Sue

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    Smile Your dog!

    Hi Sally,
    Speaking of relieving depression, when I get all of this straightened out, I would love a little dog. What kind is your little doll, and how did you find him or her? She looks so sweet, and I could use a buddy. -Hugs, Sue

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Paola View Post
    This quote is hidden because you are ignoring this member. Show Quote
    To all of you, thanks - I need to hear other MSers. I hope I am posting this right. Agate, I am very depressed and I'm pretty certain that at least part of it is the Avonex. I am now running high fevers after injection for a day and I'm sick for a good two days after injection. Sally, my UTI situation got progressively worse when I had a GP try to take me off of Baclofen - why? Don't ask. Within six months, I was having constant UTIs from extreme retention. I am on all the proper meds for it now, I catheterize regularly, especially at night, but I can't, even after a 14 day antibiotic course, clear up a UTI for more than 5 days. (Agate, I'm wondering why you went off Avonex?) (Thanks for all of the info, Linda, I am glad to hear someone's happy with the Aubagio. it sounds like you've been through the wringer. Good you're doing well w/ Rituxin.)

    I agree, Agate. After doing a ton of research on Aubagio they say do NOT NOT NOT start it with any kind of infection going on, since it is an immune suppressant. My doc was sort of hey, no big deal. Well, big deal to me. Don't know what the e. Coli treatment is going to be yet. I appreciate you all. Sue
    Hi Sue,
    You asked why I went off Avonex. A few hours after taking my weekly shot I woke up and was standing in the bathroom when I just lost consciousness and fell. Except for quite a few bruises, I wasn't injured but I could have been. I'm not one to faint or pass out, and the only other time this happened was when I was 20, with a vertigo episode, when I fell and knocked out 4 front teeth.

    Living alone and being older, I didn't feel it was a good idea to stay on a drug if it was causing me to pass out. I'd had MS since 1978 or thereabouts (diagnosed in 1980) and didn't feel much was known about how Avonex affected people who've had MS for a long time and who have SPMS.

    Just FYI, Aubagio isn't an immunosuppressant but an immunomodulator. There definitely is a difference between the two types of drugs. Immunomodulators alter the immune system, and how they do that isn't always precisely known.

    Rituxan is an immunosuppressant, however.

    Even though Aubagio isn't an immunosuppressant, there are those who would be in favor of not starting it if you have an ongoing infection, particularly since your infections have been very hard to shake off.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Linda, I really love your quote - my kind of attitude. Which is what I want to get back. So if I have this right, you are on two medications, like my neuro is proposing. Ampyra sounds very much like Aubagio. I think, though, I am exhausted from this constant E. Coli infection. I'm starting to talk to it, like you've overstayed your welcome and don't let the door hit you.....yadda yadda yadda.

    Donn't know what IVIg is? I'll look it up. It's so good to here that you're feeling well enough to do what you want to do with your med plan. I do think that Avonex has kept me walking. I am totally convinced of it. While I look back and see the subtle losses, it sure could be worse by now. But I feel like it's now time to spruce up the old bladder and make some changes. Thank you for your support. Sending cyber hugs and vibes of good health to you - woo hoo!

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    Default Immunomodulator/Immune Suppressant

    Hi Agate,
    Thanks for the info. I am also alone most of the time, and I have plenty of girlfriends (I'm a little old for that one, but hey...) who have had severe falls and broken bones. When I had a stroke in 2003, my husband at the time found me on the bathroom floor. I have been so lucky I've had no broken bones or anything - it was a week after a surgery for trigeminal neuralgia. I lost my hearing on the left and I had no balance. Had I been alone, it would have been a nightmare. (It was a nightmare anyhow.) I am so careful at and around home now.

    I don't know the difference between immune suppressant or immunomodulator. All I can recall from aggregation of hours of researching Aubagio is that they warned to clear up any infections that you may have before you begin the drug. The E. coli is severe. I cannot get off of any antibiotic for more than 5 days, and it's back. Had a two week course and it was back in a week. This gets scary and I don't want to start a new medication that might start different problems, with the present Avonex issues too.

    I have a friend who is really pushing me about Rituxin, but as far as I know, it's the mouse gene, and I won't touch that because of allergy. What are you taking now, or are you taking a break?
    Cheers, and thanks for the info, Sue

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