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Old 03-18-2010, 06:00 PM   #1
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Couple of questions.....

I have just started my Rebif treatment in the last week. While I haven't had any side effects immediately after the treatment, I have noticed that the day after the treatment I have very little appetite and a headache. Has anyone else on Rebif felt this way?

The other question is whether the electrical "zaps" I feel down my spine and in my ankle are considered a "symptom" of MS. After I had my Solumedrol treatments, the zaps had subsided and its now been about 5 weeks since then. I'm noticing they are coming back fast and furious. Do doctors generally give you another treatment to stop this from happening? Or is being on the Rebif supposed to do that?

Thanks for any insight you can provide!

 
Old 03-18-2010, 06:50 PM   #2
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Re: Couple of questions.....

I cannot help with the meds, but the electrical zaps can be an MS symptom. I also get vibrations in my thighs similar to my cell phone on vibrate. I miss a lot of calls!

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Old 03-18-2010, 06:56 PM   #3
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Re: Couple of questions.....

Quote:
Originally Posted by MSJayhawk View Post
I cannot help with the meds, but the electrical zaps can be an MS symptom. I also get vibrations in my thighs similar to my cell phone on vibrate. I miss a lot of calls!

LOL! Before I got diagnosed, that was the one thing I mentioned to dr's that made them stop and listen to me. I get the zap in my spine when I bend my head forward. My ankle pulses and vibrates like a muscle spasm. Its VERY annoying! Any time that little function wants to go into remission would be just fine with me!

 
Old 03-20-2010, 08:52 AM   #4
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Re: Couple of questions.....

Okay, I have one more question...

I have done 3 Rebif injections. I still have a red mark from the first injection a week ago (on my abdomen) but none on either of my arms. Anyone else get red marks in one area and not others?

 
Old 03-20-2010, 09:55 AM   #5
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Re: Couple of questions.....

Quote:
Originally Posted by Wilc516 View Post
I have just started my Rebif treatment in the last week. While I haven't had any side effects immediately after the treatment, I have noticed that the day after the treatment I have very little appetite and a headache. Has anyone else on Rebif felt this way?

The other question is whether the electrical "zaps" I feel down my spine and in my ankle are considered a "symptom" of MS. After I had my Solumedrol treatments, the zaps had subsided and its now been about 5 weeks since then. I'm noticing they are coming back fast and furious. Do doctors generally give you another treatment to stop this from happening? Or is being on the Rebif supposed to do that?

Thanks for any insight you can provide!
Rebif is an interferon and headaches are more common with this type of treatment. It is recommended that you make sure you are eating well and keeping hydrated. Low blood sugars can contribute to headaches.

Also, try keeping a journal of what other triggers might be leading to your headaches.

 
Old 03-20-2010, 09:57 AM   #6
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Re: Couple of questions.....

Quote:
Originally Posted by Wilc516 View Post
Okay, I have one more question...

I have done 3 Rebif injections. I still have a red mark from the first injection a week ago (on my abdomen) but none on either of my arms. Anyone else get red marks in one area and not others?
Rotate your injection site and clean the area with alcohol prior to giving the injection. Let the alcohol dry. Red marks can be a sign of infection at the site.

 
Old 03-21-2010, 04:23 PM   #7
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Re: Couple of questions.....

Quote:
Originally Posted by Mari526 View Post
Rotate your injection site and clean the area with alcohol prior to giving the injection. Let the alcohol dry. Red marks can be a sign of infection at the site.
I have rotated the injection sites, one was in my abdomen and the other 2 in each of my arms. I used alcohol, and had a nurse supervising me. I do not think it is infected, just wondering if it is "normal" to get red marks in one area and not others. I would be happy if red marks didn't show on my arms so I don't have to explain about it all summer long...

 
Old 03-21-2010, 05:38 PM   #8
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Re: Couple of questions.....

I still get red marks but they usually don't show up for a couple of days. I don't think it is an infection just what happens,

 
Old 03-21-2010, 07:00 PM   #9
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Re: Couple of questions.....

Thanks Momma! That makes sense. I didn't notice a spot on my abdomen right away now that you mention it.....

 
Old 03-22-2010, 03:49 AM   #10
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Re: Couple of questions.....

The red marks always show up 2-3 days after you do your shot and last about 3-4 days, by that time you'll have another one in a more recent injection site. IT does NOT mean they are infected, as long as they are just red and dont swell or itch.

I have offered this advice before, and most people find it helps. Look for a product in the health food store called Arnica gel. Its clear, comes in what looks like a toothpaste tube- and its non staining, and not greasy. You can use it immediately after the shot to massage the area. Then, use it again the next day or two after you shower. Arnica is an all natural gel which feels alittle like aloe when you first massage it....American Indians discovered it for bruising and muscle sprains- its main purpose is to reduce swelling and redness. By using this everytime you inject, you will notice a substantial reduction in redness. We Rebif'ers call it the bullseye spot.

Glad to hear you arent having any problems with the Rebif for now....most people wont have a reaction until they go to 44 mcgs, if they are going to have one at all......headaches are very common, which is why most MS nurses suggest either a tylenol or some other OTC pain relief 1/2 before the shot. I prefer Aleve, taken immediatley after doing my shot- it lasts 12 hours and seems to help with all the interferon symtoms.

The buzzing feeling you are getting when you bend your head forward could be known as the MS hug. Its a quick stabbing shocking pain which goes right down your neck and back.....this could be affecting your ankles and legs; especially if it only usually happens when you bend forward. Its not Rebif related, but could be MS related.

Keep us posted and good luck!
Nikki
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Old 03-22-2010, 07:25 PM   #11
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Re: Couple of questions.....

You are welcome. That's why this is such a great place, put a question out there and many helpful people are there to answer.

 
Old 03-23-2010, 05:03 PM   #12
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Re: Couple of questions.....

Thanks for the response!

I guess what confuses me is that I only have the bullseye on my abdomen. It never showed up on my either of my arms. I just thought it was odd to get it only in one area. Not the biggest issue ever. I will see if I can find that ointment type stuff you mentioned.

I knew the zap in my back wasn't related to the Rebif since I have had that happening since November-ish. I talked to my dr today and since the pain and numbness in my arm is getting a lot worse and starting to creep into my feet and the zap is getting worse, I am going to be getting monthly solumedrol treatments starting Thursday. At least for a month or two and see if we can settle it back down.

I have been taking the Aleve an hour before the injection and it seems to work. Either that or there is nothing for it to work on because I'm not yet getting the side efffects. The lack of appetite the day after my injection isn't the best thing in the world and I notice that my bilateral vestibular loss related issues are worse the day after the injection. Then again, my BVL issues could be worse the day after b/c I don't eat as well as I should and when I don't eat right, my symptoms get worse. Which came first, the chicken or the egg???

All in all, I'm adjusting pretty well with this whole condition. I've been doing the injection without the auto-injector, it just seems to be an extra added layer of effort and I seem to be able to tolerate (mentally) giving myself the straight injection.

 
Old 03-23-2010, 06:32 PM   #13
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Re: Couple of questions.....

Its okay that you are using the autoinjector- thats what its there for! I find that in my thighs and rear, i actually do better NOT using it, but in my arms, I have to. I cant reach to do it properly without it. As for the bullseye- I only get it on my tummy and thighs, never on my arms or rear. One thing you might check into- what setting is your autoinjector on? if you are pushing too hard into the skin with it, or if its on the deepest setting, try moving it up to a lesser setting (mine is on the middle setting) to see if it helps. It might lessen it....the arnica is highly advised. Lots of people have thanked me for that tip!

You need to eat right. That, and stay hydrated. Lots of water on shot days! im a coffee-holic. On shot days, I force myself to drink at least 3 bottles of water, after my 3 cups of coffee, before I go near my syringe. It does make a difference.

I think the idea of monthly solumedrol is a good idea. It wont hurt you- not unless you are doing more then 3000 mgs a month. if its one dose of 1000 mgs, it will help you. Youll see a difference. Most importantly, Rebif doesnt really start to work until about month 6....so hang in there. If your going to see improvement, its going to take a few months. I saw improvement in my balance, my eye issues AND less fatigue. In fact, I actually get bursts of energy on shot nights.

Im sorry I dont know a whole lot about BVL. Ive been reading up on it, since you first mentioned it- but how Rebif will affect/ help it, remains to be seen. Overall though, I think youll start feeling really good in a few months. If you are going to get side effects, youll know soon enough- but even those will be nothing compared to some of what you have already been thru!
Congrats on joining the Rebif club...
Nikki
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Old 03-23-2010, 06:45 PM   #14
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Re: Couple of questions.....

Actually, what I meant to say if I didn't was that I wasn't using the Auto-injector. I've just been using the straight syringe. I have only used the auto-injector one time. I think I will be switching to my backside tonight so I may use the auto-injector for that. Not sure if I can reach back there...

Water is no problem, its food. Ick. I can barely get it down. I eat, but certainly not as much as a non-shot day.

I'm glad I asked for more solumedrol. It did seem to work my last round. I figured it would take some time for the Rebif to start to have an effect.

 
Old 03-24-2010, 04:40 AM   #15
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Re: Couple of questions.....

no, you were right. You did say without the autoinjector. My apologies, I read it wrong. So, youre injecting without it- well, then just make sure you are doing it properly and unfortunately the red marks will happen in certain places. Look into the Arnica- and see if it doesnt help.

Not sure what to tell you about your eating habits, but obviously you are aware that you arent eating right. SO, make the effort. I carry allot of small portable 100 calorie things with me- Im in sales, and in the car all day. I also take yogurt and cottage cheese with me, the individual servings as well as fruit and cut up carrots and celery most of the time! Even though I dont eat regular meals at regular times, I do snack on my munchies all day and make sure that I get more into me then just coffee.

Sounds like youre coming along just fine with this....lets see what the next month of injections does for you! I think youll be better off then you are now and wouldnt that be nice??!!

Nikki
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