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  • Started Betaseron ... real fun :/

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    Old 12-03-2014, 08:28 PM   #1
    mindi111
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    Started Betaseron ... real fun :/

    So I started Betaseron yesterday. The autoinjector is really user friendly and I'm comfortable with doing injections on myself thanks to already doing B-12 injections regularly.
    Though a few hours after I did it I had chills that were out of this world bad! I took some Tylenol and 20 mins later they subsided. But man they were bad. The nurse told me to take it before bed from now on and I will be! I think I'll take Tylenol or Advil along with it too... is that ok to do? I don't want to regularly take only Tylenol because I know it can be hard on the liver, so I'd like to alternate with Advil but I haven't heard whether this is ok or not. Can anyone confirm?

    Also, unrelated question... can neck stiffness be an MS symptom? The upper part of the trapezius is really becoming stiff in the evenings especially. Seems to coincide with being cold (which I often get in the evenings). When I had the chills yesterday from the Betaseron, it hurt so badly I was in tears. Just wondering if this can be MS related.

     
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    Old 12-03-2014, 09:02 PM   #2
    MSJayhawk
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    Re: Started Betaseron... real fun :/

    Worriedmama28,

    Muscle tightness could be from MS or not. Some MSers can experience neck and back pain. This may be due to immobility, or to the same type of wear and tear that many people without MS experience. The muscle stiffness sensation can be moderately severe.

    You might need to have the doctor rule out other causes of pain such as lumbar disc disease even when you have MS. Rehabilitation therapy, stretching, aquasize, and other physical measures may be useful. If it is non-MS related, an anti-inflammatory OTC or prescription might work. If the anti-inflammatory does work, than you know it is not MS.

    Ask your doctor or the nurse regarding you long term use of Tylenol or other OTC.
    __________________
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    Old 12-04-2014, 04:27 AM   #3
    MSNik
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    Re: Started Betaseron... real fun :/

    Hi Worried mama,
    Kind of warned you that this is a whole new adventure, didnt I? (grin).
    Welcome to the world of Interferon. Its not fun in the beginning!
    So, to answer your questions, there is absolutely NOTHING you cant take with Betaseron, no contraindicated drugs at all. Antibiotics are fine, over the counter pain killers fine, pain pills fine. No worries there....in my experience, the best thing to fight off the chills and "flu like symptoms" with BetaSeron or any Interferon, is to take an Aleve (Naproxen) one half hour prior to the injection. Naproxen lasts much longer than Motrin/ Advil or Tylenol and is much gentler to the liver and stomach. Because Naproxen lasts longer if you take this a half hour prior to the shot, and then go to bed, youll probably sleep thru the night. However, if you wake up sick, its fine to take another one and go back to bed. My little trick was to take a Naproxen PM a half hour before, do the shot, go to bed and most times Id sleep thru the night! Or you can take a regular pill half hour before, and right before bed take a non narcotic sleep aid (even Melatonin) works for many people and you will sleep thru the worst of it.

    Also in my experience, it did take a half hour for the chills/ lousy feeling to start. If you can get thru the next 8 hours, it should be entirely over. Youll go thru this for about 2-3 months ONLY ON SHOT DAYS.
    One day you will wake up and realize you didnt have a single side effect, that you feel good, and youll know the side effects are finally over.
    Stay hydrated during the day, increase your water intake (up until about 4 pm so you arent up all night in the bathroom), it helps.

    Do you remember me telling you about Arnica Gel? Have you gotten any? Health food store, some grocery stores have it. You might want to invest in it. Its relatively inexpensive (about 7$ here in the states for a big tube). Massaging with this, really does keep the redness/ bruising down and you will see less irritation in your skin when you massage directly after injecting if you use it. Eventually, the skin gets irritated from injecting. I used to get a red bulls eye around the injection spot about 24 hours after I injected, this really helped. Those bulls eyes lasted about 48 hours and in the summer were very irritating to me!

    Last hint of the day. Did your nurse tell you to use hot compresses or ice prior to the injection? Mine told me heat. It wasnt a good idea. It actually make me sick to my stomach. I switched to ice before the injection for 5 minutes and nothing but massaging with Arnica after, and it worked for me. Heat and Ice are interchangable. It simply depends on which one helps you more. You can use either both before and after the injection.

    I promise you this wont last too long. Every shot you do brings you closer to not getting those dreaded chills or symptoms. They DO stop. Your body just isnt used to this level of Interferon being injected. Remember, the brain makes Interferon- its a normal part of your body chemistry; its just you are elevating the levels by injecting. Your body will get used to this.

    Please dont forget to get your blood work done in 10-12 weeks. It can elevate your liver enzymes and your doctor will want to make sure you are tolerating it well. (BY the way, mine were elevated, my doctor told me to stay on it anyway and we would repeat in 6 weeks. Sure enough he was right and they leveled out by the second blood test. Its not unusal for you to have a spike in the first quarter, its only dangerous if it doesnt level out after some time).

    And one last piece of advice as you are crying in the bathroom after an especially bad shot- YOU ARE TAKING CONTROL OF YOUR MS. its NOT controlling you. I want you to remember that and be very proud of yourself for trying something that not many people are brave enough to do!

    Youre in my thoughts . And, I will gladly cheer you on if you need it. Keep us posted!

    Nikki
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    Old 12-04-2014, 08:54 AM   #4
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    Re: Started Betaseron ... real fun :/

    Haha Nikki yes you did warn me!! I was thinking such a low dose wouldn't affect me much but apparently it was enough to cause the lovely side effects!

    Thank you for the information about Naproxen and when to take it etc. I have some at home so I will take that with my dose tonight. I'm going g to try and find some Arnica gel today and start using it. Also the nurse didn't mention anything about icing the area before injection, but I watched a video on the website and they said to ice it for one minute prior to the injection and 1 min after. I'm definitely going to do that! The site hurt for a good 24 hour from the last one. I did it in my abdomen, tonight I'm going to try my thigh.

    Re: Baclofen that I am taking, I think in noticing an effect! The past two days my walking has been significantly better! I also start physio on Monday which I am really excited about! Will be great to learn how to deal with my legs as they are. It's a fine line between using them enough ad using them too much!

     
    Old 12-04-2014, 05:03 PM   #5
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    Re: Started Betaseron ... real fun :/

    Happy Days! Im very happy to hear the upbeat sound of your post! Keep doing what you are doing and you have a sound plan! Im especially excited to hear that the Baclofen appears to be working for you!
    PLease dont hesitate to shout out any questions...and remember too, even with the autoinjector, dont push it against the skin hard...you only need to touch the skin with it for it to go where it needs to go. If you push too hard, youll find that youll hurt more the next day. Icing may help....it never helped me post injection, but I found it did help prior..if it doesnt work, you can try a hot washcloth for a few minutes. Each of us reacts differently to hot and cold. Find what works for you!
    Keep me posted! big hugs!!
    Nikki
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    Old 12-05-2014, 06:54 AM   #6
    mindi111
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    Re: Started Betaseron ... real fun :/

    Thanks Nikki! I'll be sure to ask questions as they come

    I did my second shot last night. I had my husband watch me so he knows what is going on. I took Naproxen an hour before. I forgot to ice it beforehand. I did it in my thigh... one good thing about my MS is that I have very little feeling of any part of my legs! So I didn't feel the needle go in at all (granted, it's a 30 gauge needle... hard to feel that anywhere!). I did feel the medicine go in though which feels super gross.

    I iced it after for a minute and after a shower I put some Arnica that I picked up yesterday on it. I took my Baclofen and LDN and went right to bed, and I woke up through the night to tend to kids' needs and to go to the washroom, and I didn't notice any side effects at all!

    I'm so excited about how well I've been walking the past couple days! I'm taking the kids to the mall today to see Santa, which requires a bit of walking. Hopefully it's not overdoing it. Thankfully there are lots of benches in the mall

     
    Old 12-05-2014, 07:59 AM   #7
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    Re: Started Betaseron ... real fun :/

    mindi111,

    The fact that you are walking well has to do with your MS cycling and recovering rather than your shots. It is, however, great news to hear. When we regain some of what we lost, it is a terrific feeling.

    You definitely need to watch for things insomuch as moderation should be your mode of activity. I still over do things when I miss a signal or there is no signal forthcoming to tell me to stop. I generally do not know I have done too much until the following morning unless I saw a signal and pushed past my red line. As you gain experience and your body signals message you in such a way that you know, it may take some time.

    Husbands (guys) want to see that "1 + 1 = 2"; therefore, your husband should firmly understand that the shots will not cure you, that you will still have relapses, and that the meds are only supposed to reduce the progression rate. There is simply no guarantee. So long as your husband understands, it should bode well long term.

    You will probably continue to hear from well-intention friends who visit Dr. Internet to fix you. They do mean well. My mom tried for many years. She felt for many years that she had done something wrong. In her last ten years she finally reached a place where she saw that it was nothing she did or did not do. Grief will follow your situation and it is often those around you who carry the grief.

    Keep on keeping on. One day at a time is all we have- make it count!!
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    Old 12-05-2014, 06:56 PM   #8
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    Re: Started Betaseron ... real fun :/

    Mindi111,
    YEAH!! Im happy to hear that the Baclofen has kicked in! Sounds like youre doing great!
    Im glad you have your husband to support you. I remember when I first started doing my shots, it freaked me out so badly, that I had my husband do my first months worth...then one night, he had to work an overnight and couldnt get home on shot night. I was terrified to do it myself, but I got thru it. Thats when I knew, its really important for us to take care of ourselves...but on the off chance that you are having a really rough night, its also important that he can administer it to you.
    You might find that certain areas are easier to handle than others (of your body). Thats okay. I had to stop doing it in my tummy, because I honestly dont have enough fat to do it there. I had to stick with just the back of my arms and my thighs. But since we have 2 sides of the body, it worked out fine. Youll find what works for you. Ice seems to have helped...maybe the Arnica...whichever, youll get into a pattern where this is second nature to you.
    IM really proud of you for "sticking" with it and giving it what appears to be your all!! Keep up the great work!
    Have a good weekend.
    Nikki
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    Old 12-05-2014, 07:39 PM   #9
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    Re: Started Betaseron ... real fun :/

    Well the mall to see Santa ended up being too much haha. And the line was so long we just left. Then the kids had lessons and by the end of those my legs were done! But at least I did it all! That is more than cane be said of the past month for me.

    I do know that the improvement has nothing to do with the Betaseron and is just due to the remission part of this disease. I'm just so happy that I'm have a remission! And that I had a well defined relapse (I can pinpoint the day!). I had been thinking for a long time that this might be PPMS but his gives me hope that it's not. And I think anyone could agree that that's huge!

     
    Old 12-05-2014, 07:48 PM   #10
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    Re: Started Betaseron ... real fun :/

    mindi111,

    Very likely not PPMS. That determination would be made after observing your time with MS. If you journal and record your data, you will have a pretty good idea where your MS stands (You can find line graphs online and compare your recorded data). It is indeed a good thing to be able to enjoy a respite. I hope yours lasts a lifetime
    __________________
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    Eternally blessed and eternally optimistic!<><

     
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