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Thread: Anyone with SPMS on any of the ABC's?

  1. #1

    Default Anyone with SPMS on any of the ABC's?

    I know everyone has read that the ABC's are for people with RRMS and aren't helpful for other types of MS. Unless you can provide a link that states otherwise?

    So, I'm seeing a new neuro next week, and I know the subject of starting something for progression will be brought up. My other neuro wanted to get me on one of the three, even though he knew I was SPMS. He tried to convince me that I was still RRMS, so that my insurance would cover it.

    I don't want to start a powerful drug if it's not going to help and only give me bad side effects, plus mess with my body even more. I've had MS for over 27 years, the last 13 of them SPMS. I know this because I have daily symptoms with no remission.

    What I'd love to know, is there anyone here on one of these drugs who has SPMS, and do you think it's beneficial for you? I can understand if you had RRMS when going on one of these drugs. But is there anyone who went on one of them after you knew you were beyond that point, and do you feel it's helped stop your progression?

    Also, is there anything for progression when you are beyond RRMS? I haven't read of anything, so if you could provide a link that would be very helpful.

    I want to sound as knowledgeable as possible when I see the neuro next week.
    Thank you all for any help you can provide! Gretchen

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  3. #2
    Distinguished Community Member SalpalSally's Avatar
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    Hi GD. Being SPMS myself, I can only recommend LDN (LowDoseNaltrexone)
    None of the others work for us or for PPMS. I feel that LDN has stayed my
    progression, helps minimize my SX and gives me an all around feeling of
    better health and well being. It is not a cure or any kind of a miracle drug,
    But it works for me. I felt sick and weak all of the time on the so called DMDS.
    Last edited by SalpalSally; 08-06-2013 at 11:15 AM.
    Love, Sally


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







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    Distinguished Community Member Jeanie Z's Avatar
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    :) Hi Gretchen, like Sally I have been on 4.5 mg of LDN for over 13 years. I became SPMS in 1992. I have had MS since I was 18 and I am now 72.

    I took the print out on www.lowdosenaltrexone.org (the MS llink) to my primary and he was agreeable to my trying it as it is such a low dose. I did not get any improvement on LDN as many MSers do, but I have had NO new symptoms and NO further progression while on it and I am happy about that. It is a nightly capsule. I send my RX to www.thecompounder.com and he ships overnight.

    I went on Betaseron 5 years and Avonex two years and got worse while on both of those. I hope your doctor appointment goes well. Jeanie :)

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  7. #4

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    Hi ladies and thank you for reminding me to ask about LDN, that's something I've been interested in trying for a while now. Just never thought to bring it up to any doctor. I like the idea of low side effects as well! So this will definitely be something I bring up next week.

    Thank you for the links, Jeanie.

    I don't know why doctors continue to push these drugs on patients who obviously are not RRMS anymore. It's so frustrating, esp. when you are trying to get real help with symptoms, to make life as easy as possible.

    Thanks.....Gretchen

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  9. #5
    Distinguished Community Member agate's Avatar
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    Hi Gretchen,
    I know it's tempting to wonder if the doctors are just trying to sell these drugs. But I think that the number of doctors who are promoting the ABCR drugs for mercenary motives is probably quite small.

    They want to offer something for our disorder. Only in the last couple of decades has there been anything available that could be offered for MS, and doctors want to help us, not send us away hearing that we should "just" learn to live with a lifetime of MS.

    I tried two of the drugs even though I have SPMS--and have had it apparently since 1978-80. Three years on Avonex and nearly three years on Copaxone.

    It's not that the drugs don't work on SPMS. It's that they haven't been tested in SPMS and so it isn't known whether they work, though I think Betaseron was actually tested to some extent.

    I believe the thinking is that once you're no longer having inflammation and relapses, the drugs probably will be of only limited use. But there are people with SPMS who do still have relapses.

    Since the situation is so muddy, you might as well just go with your instinct and listen to the advice of a doctor you feel is competent.

    Most neuros will prescribe one of the ABCRs for patients who want to be on one of them or will even encourage you to take one of them. I'd be suspicious of a doctor who was pressuring someone, though.

    The two neuros who have overseen my use of these drugs presented them to me as something I could try if I wanted. As one of them put it when he was suggesting Tysabri, "We have to let you know what's available."
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #6

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    Hi agate, I did fire my last neuro because he was pressuring me to get on one of the ABCR's. He knew I was not RRMS anymore, but wanted to "pretend" that maybe I was. I appreciate that he wanted my insurance to cover it if I changed my mind, but he wasn't seeing my point and there was not much respect for each other.

    I'm hoping this neuro is more realistic and will prescribe meds for symptoms, plus update me on any new meds that may come along for patients with SPMS. I also like having at least a brain MRI every few years, and an exam every year. I now feel it's important to have regular contact with a neuro since my condition could be progressing. My GP isn't up on MS info and also won't prescribe certain meds that I might need.

    Anyway, I believe that whatever therapy one is on, it's important to have faith in it and see some sort of results. I think we can all agree with that!

    Take care everyone! Gretchen

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  13. #7
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    I have tried this twice and lost it twice. What is with this autosave thing? Maybe my message is floating around the site somewhere?

    I stopped Beta about 4 years ago after being on it since 1991. I was diagnosed then (and now) as having SPMS. It kept my MS stable, kept me doing relatively well. I've had nothing but problems since stopping. Just in the last 6 months I've been hospitalized twice, and getting ready to go back in today. I have lost control of my bladder, I can't stand, can't transfer, have no energy, have all sorts of other problems.

    No guarantee of course that it was the Beta that was the key...but things were MUCH better while I was on it, than now.
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  15. #8
    Distinguished Community Member SalpalSally's Avatar
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    Auto save is great, if you learn how to use it.
    If I lose a message, go offline and come back to where you were and
    "auto save" comes up, hit it and , walla, your lost message appears..!!
    Love, Sally


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







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  17. #9
    Distinguished Community Member agate's Avatar
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    Thanks, Sally. I've been trying to figure AutoSave out for a while too. I went looking for more info:

    http://www.braintalkcommunities.org/...t-quot-feature
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  19. #10

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    Hi Cat, Any chance of going back on Beta? I'm very sorry to hear about your relapses since being off of it. Certainly sounds like it did keep you stable. I'm very confused as where to go next, but hope this new neuro can shed some light on my new symptoms and offer something not too deadly.

    I will be inquiring about LDN, medical marijuana and an epileptic drug they use for painful spasms (short term use only). Right now I'm getting by with baclofen and a touch of klonopin for the spasticity. Still having walking problems (weakness) and my knees feel like they could buckle under me at times. I'll also be curious as to what they say about using ABCR's for SPMS.

    I hope you get to feeling better. Gretchen

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