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    Old 06-18-2007, 10:16 AM   #1
    MSNik
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    Achtar Gel

    Hi everyone. Some of you were waiting for updates on Achtar Gel. Obviously, only having had one shot today, I dont have any symptom improvement yet, but I can report that at 9 am I went to my doctors office not sure what to expect...and at 9:10 walked out, finished for the day.

    The nurse gave me the IM shot in my arm. IT didnt hurt, didnt even burn, and really did take less than 2 minutes start to finish. Im very impressed that Im not having any muscular pain, or even bruising, although it might be too soon for that. 3 hours later, I feel the same way I did this morning, when I woke up, which is like I really am having a relapse, and really DO need this round of Steroids. If this doesnt work, Im going to go back and do the solu-medrol- but in all honestly, this is SO MUCH EASIER TO HANDLE!

    More later, hopefully I can report in that this worked, or at least did something for me. I had some bad news today, work wise, and my cat is sick and being hydrated at the vets office as we speak, so emotionally im kind of a basket case right now...Im praying the Steroid doesnt increase this mood swing im currently having...at least I can honestly say, it wasnt steroid induced. It was LIFE induced!

    Hope everyone has a great day. More later.
    Hugs,
    Nikki

     
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    Old 06-18-2007, 10:44 AM   #2
    jb10
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    Re: Achtar Gel

    Hi Nikki,

    Glad to hear the Acthar went well. It definitely would have easier if someone else had given me the injection.

    So sorry to hear about your cat !

    Will catch up later.
    Jenna

     
    Old 06-18-2007, 11:17 AM   #3
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    Re: Achtar Gel

    Jenna. Wish we COULD catch up....this stinks..but thanks for thinking of me and letting me know. So far, so good. No real issues, but of course too soon to see if this is working at all...
    the good news is IT DIDNT HURT!
    Thnking of you, Jenna. And wondering, do you go to any MS support groups? Im looking for one, mine, in the Lambertville area just closed due to lack of interest.....have you found one which is good for people like us?

    nikki

     
    Old 06-18-2007, 02:23 PM   #4
    jb10
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    Re: Achtar Gel

    Hi Nikki,

    No, I've never been to an MS support group. I thought they might depress me. I think the closest one to me is in the Freehold Area. I live in a tiny town in Monmouth County-I guess there might be one near Princeton- which is also about 30 minutes from me. I've also written on the MSWorld support group, but I like this one better. It is very valuable. I've gotten a lot of info. on both boards.

    Glad the Acthar seems to agree with you. I started to feel somewhat better after about 5 days. I felt really good on the Solumedrol, but my Dr. wasn't too anxious to give me more of that. What symptoms are most bothersome for you?
    Jenna

     
    Old 06-18-2007, 03:38 PM   #5
    MSNik
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    Re: Achtar Gel

    Hi there. To answer your question, my most bothersome issues besides heat fatigue and dzziness, are my hand. For 10 months now, its never given me a a moments rest. It tingles, burns and drives me nuts 24-7. The heat has made it soo bad that steroids were the only thing left to try. Neurontin, LYrica, etc do NOTHING for me.
    The next issue is my feet, in the past few weeks they have also been going numb, causing a very LARGE problem when it comes to both walking, and more specifically driving. Intermittently, I cant feel the bottom of either foot...pressing on the gas pedal becomes an issue, even more so than walking- although my balance has been awful due to this! Since I drive as a sales rep, driving is critical to my job description as well!

    I do hope the steroids start to work before 5 days are up, since Im only doing 5 days of them! Ill keep you posted. No reaction though, its been almost all day and my arm doesnt even hurt! Thats encouraging...
    Check ya later..
    Nikki

     
    Old 06-18-2007, 05:00 PM   #6
    KTMorra
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    Re: Achtar Gel

    Congrats Nikki!

    I'm so proud of you for going through with the Acthar. I know how hard it was for you to make that step and I am very happy that it went so well.

    Take care and Keep Me posted
    Thanks
    KT

     
    Old 06-18-2007, 05:21 PM   #7
    MSNik
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    Re: Achtar Gel

    Thanks Kara. It wasnt bad at all..of course, now, 12 hours later, I cant honestly say I feel any different, but hopefully with day 2, more in my system, it will start making me feel better....with only 5 days total, im thinking we should have done this for more than 5 days, but my doctor was being cautious....anyway, no bad reactions, so thats a major good thing. Thanks for saying you are proud of me. I needed to hear that tongiht.
    Hugs,
    N

     
    Old 06-18-2007, 06:00 PM   #8
    jb10
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    Re: Achtar Gel

    Hi Nikki,

    Sounds like some of our symptoms are the same. My feet constantly burn and are partially numb. I can feel them, but it's like a reduced sensation. It greatly affects my balance and driving is also difficult at times. Also, the most annoying symptom is foot drop in my right foot. After walking for 5-10 mintes, it's really difficult to lift the front of my foot, I end up slapping it. After a while, I can barely walk without resting a lot. I heard about this device called a Walkaide, which stimulates the muscle needed to lift the front of the foot. My neuro. said it might work for me. I have an appointment for a consultation in 2 weeks. Of course, insurance most likely won't cover it and it's $4500. But, if it helps me walk, it's definitely something I'll consider.

    My Acthar treatment was for 10 days. I probably would've been better off with 5. I think it's good your Dr. is being cautious.

    Jenna

     
    Old 06-18-2007, 06:50 PM   #9
    MSNik
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    Re: Achtar Gel

    Jenna , Jenna. Im going to have to check out that support group in Lawrenceville...huh?
    We do have alot of symtoms that are the same, I too, experience foot drop at times...its not that common for me, but when it hits, I feel like crying. Try having that happen when you are on a sales call, in a skirt and heels...lol. I no longer wear any heel higher than one inch. Its too embarrassing...Lots of pantsuits in my closet!
    I have heard of that device...look into the MS society, sometimes, they help you with things like that. If you are as much like me as I have a feeling you are, they might give you the run around as far as your "status" financially. My husband makes a good living, however the fact that he pays out 2200$ a month in child support, is NEVER taken into consideration! We live paycheck to paycheck just like the rest of the world, but that too, is "too much". Anyway I have heard of organizations which help you with devices and such, you might qualify, simply because this could be deemed a necessity. Maybe the place where you have the consultation will know more...dont forget to ask! You deserve any help you can get.
    Meanwhile, good to know im not alone in this world. Sometimes, I truly feel it. I want to start a group for us...just dont know how to find people to do it. You mentioned you know of Dr. Jalbut...ever get to his office?
    Nikki

     
    Old 06-19-2007, 02:02 PM   #10
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    Re: Achtar Gel

    Hi Nikki,

    Yeah, maybe I'll look into the Lawrenceville one as well. Never know.

    Heels? It's been probably 4 years since I've been able to wear heels. I don't them too much, since I'm 5'8", and I always felt they made me feel way too tall. But, still it would be nice to have the option. The foot drop is the worst. It really prevents me from doing a lot of just normal stuff, like going to the mall- without pain. That would be a dream. I'm hoping the Walkaide works out for me. But, that price is pretty steep. I went through the whole child support thing. At the time (in 1987) we paid $1000 a month, and we had the kids half the time. We had no money. Luckily, those days are over.

    It is definitely helpful to have people who are going through similar things. Mostly, it feels like I'm totally alone in this. I try to keep upbeat, but it's real, really hard.

    Guess the Acthar is still going well?

    Jenna

     
    Old 06-19-2007, 04:17 PM   #11
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    Re: Achtar Gel

    Hi Jenna, and anyone else who is interested in Achtar Gel.
    Yup, its going well. To be honest, I feel better today then I have felt in a long time...the shin splint like pain is not appearing, the eye issues are mostly not noticable. I was having more muscle related eye stuff then optical neuritis, thought it might be allergies, but the opthamologist said "nope, MS pain". Well, its gone. My hand is still hurting, but to be honest, its probably hurting slightly less than it was 3 days ago...of course, its not quite as humid today, which does help, but overall, I have bursts of energy, and feel pretty good. The shots itself, dont hurt at all. Thank Goodness! I dont even have any muscular pain where it is injected.
    Lawrenceville might be a good meeting. I believe they are on Sunday afternoons....Ill have to look into it.
    Nikki

     
    Old 06-19-2007, 06:00 PM   #12
    KTMorra
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    Re: Achtar Gel

    Way To Go Nikki
    Im sooo glad your feeling better with the Acthar. What a difference a few days make.
    Hope you keep feeling better each day
    Kt

     
    Old 06-19-2007, 06:03 PM   #13
    MSNik
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    Re: Achtar Gel

    thanks Kara. I only wish I could take this instead of Rebif for the rest of my life! Too bad the side effects are so horrible in the long run..however, it is good to know that I have another source of relief, should a really significant flare up come on....this was kind of a test for me. Wil it help at all? IS it that horrible to do the IM shots, vs. the IV...all of which I confirmed that it is definately working and worth it to try again, if necessary. I just hope the good effects linger a few days at least after I stop the shots...it seems that with only 3 more, im already wondering if everything is going to go haywire right after I stop the drug....
    anyway, thanks! How are you feeling? Your posts are sounding like you are feeling better...I hope you are.
    Nik

     
    Old 06-20-2007, 02:11 PM   #14
    jb10
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    Re: Achtar Gel

    Hi Nikki,

    Glad you are responding well to the Achtar. Hope it last a long time. The prenisone I'm on now is causing all kinds of problems- dizziness- very annoying.

    Where in Lawrenceville?

    Jenna

     
    Old 06-20-2007, 02:45 PM   #15
    MSNik
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    Re: Achtar Gel

    Hi Jenna. was resonding well to the achtar....call it a bad day, or what, I dont know, but I have been basically losing my mind since my injection this morning...really bad day at work, the car broke down on 287 on my way to an account. Spent hours in the heat trying to get a ride back to my office, then more hours IN the office trying to rearrange my schedule. Left the house at 6 this morning, its 5 pm and I just got home...Im going to bed. Maybe tomorrows injection will help me more...Im calling in sick at work. To heck with this. I need rest more than anything..
    will keep you posted.
    Nikki

     
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