rebif---

A board to discuss the Multiple Sclerosis modifying drug Rebif

Postby DawnsBrain » Sat Jul 03, 2004 5:18 pm

lynn45 wrote:Dawnsbrain, I am not sure on why the lower dose, unless she is being cautious until my blood work gets done. I was off for one week and am having my first relapse since before I started rebif...I have really bad neck pain and leg heaviness and tingling. Also, thanks mscaregiver for the injection info and the link.


Well, get that blood work done to possibly see what is going on. Let me know. I find this most interesting...sorry it's happening but, I have to wonder IF I should really be taking any injections at times. Something I am sure eveyone with MS has considered.

I have felt horrible since starting the injections.
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inj site reaction info

Postby guest » Thu Jul 22, 2004 8:59 pm

mscaregiver:

I am new to this site and am thrilled to see so much relevant information.

Some of the info you posted re: managing injection site reactions with rebif is contrary to what I've read elsewhere. For example: the description of the sites for the buttocks doesn't sound like what the manufacturers recommend, and the mfrs actually recommend the back of the arms, as well as rubbing the site post-injection to disperse medication. Why the differences?

Any opinion on using heat pre and post injection instead of ice? I just tried that last night and it seemed to help with the pain. I'll have to wait a day or 2 to see if it turns any less red than usual.

Thanks for the info!
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Postby Felly » Fri Jul 23, 2004 2:17 am

Hi there guest,

The manufacturers description of injection sites for rebif is very contradictory. I found the rebif website had a diagram of injection sites different to the injection guide booklet so I called them. What they told me correlates with the injection sites that mscaregiver has posted information on. And the best way for doing the buttocks, or rather the haunch area, is by sitting in a chair.

Also the rebif guide only mentioned below the waist line for injections but they told me that it can be done up two inches (or about the width of your index and middle finger together) above the waist and about two inches on either side of the navel. I found this much less painful than below my waist line.

The reason the back of the arms isn't recommended by the MS society that provided the info in mscaregivers post is, I believe, because, for many people with MS, this area is hard to get to unless you have assistance. Otherwise it is not a problem, I find if I sit in a armless chair and pull the back of the arm skin up against the chair back so the back of my arm is now in clear view and then it's pretty easy to reach the site. It is also the most painful place for me, because I don't have much fat on my arms, but needs must!

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injection sites

Postby lynn45 » Fri Jul 23, 2004 3:09 pm

Hello
I have also gotten contradictory information on injection sites. The nurse who taught me to inject said above the waist was fine. The nurse with MSLifelines ( sponsored by the drug company) who calls periodically said no. I need to find out more. Maybe from some of you who inject there with no problems. I keep the red places for a while so have to really look for places to inject. I have not been brave enough to try to the arms yet. One interesting side effect I have experienced in the 6 months I have been using rebif is weight loss of about 15 pounds. Which is making it harder to inject in some places. My latest challenge is a bout with shingles, although it is getting better, or maybe that is just the prednisone talking, (I won't have to worry about that weight loss)......But on a brighter note, I had my annual mri last week, first since rebif and it's the first in 2 years that showed no new lesions, and while I have read that lesions are not necessarily an indicator of disability, I'll take it as a positive. You all take care and have a great weekend...
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Postby DawnsBrain » Sun Jul 25, 2004 12:49 pm

I quit using the arm injection sites as they hurt too damn much no matter what they say about technique using these sites. Just holding my arm up a few days afterwards hurts.

I used some cortisone cream on my inj sites that were itching and it seems I had an allegic reaction to it. We are talking weeks old sites here that got flaming mad and became raised, red and itched even more afterwards.

I called the doc's office and was instructed to use....get this...preparation H wipes on them. They have witch hazel in them. ONLY offers temp relief and my sites are taking FOREVER to clear up. The itching is most horrible and now, it seems I have hives. I do not know if the hives are a reaction to the wipes or my shot on Friday night.

I have to wonder though about the hives b/c it seems the day after an injection I am short of breath and now the hives. I had shortness of breath yesterday(Sat)and the hives appeared later in the evening. I have always understood the reaction would happen within fifteen minutes of the injection so I am wondering could this be a delayed reaction to the injection???

I have to shoot the tube in the morning at 7am and am wondering how the hell I am going to stay still with all this itching. I have an appt with the neuro on Tues for a look at the new MRI films so I guess I will deal with it all then.

I HATE having this disease!!!! It seemed I was much better off prior to ever starting trtmt for it. Sorry...just not feeling all that great today and the itching doesn't help me feel any better either. I am afraid to try anything else in fear of causing the site reactions to be even worse and the hives to become worse.

Thanks for listening to me. My family just looks at me scratch and bitch and still do NOT get it.

So I sit here....scratching and wondering IS it the injection, the wipes or something else going on. And of course, cursing myself b/c I may have inadvertenly set all of this in motion by using the cortisone cream.
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Postby DawnsBrain » Sun Jul 25, 2004 12:51 pm

lynn
I have also lost weight since starting the Rebif. I have a very unhealthy look to me that I feel is caused by this toxin used for trtmt. My hair has also thinned and I had an overly thick head of hair that I once paid to have thinned out.
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Postby lynn45 » Sun Jul 25, 2004 3:16 pm

Dawn,
Sorry to hear about your reaction.. I know what you mean about the itching..I have sensitive skin anyway and am allergic to lanolin so I have to avoid most everything. My neuro took me off the rebif for one week, then had me start back at 1/4, then 1/2 doses. I have not had hives again. She did say that I may have to get off and try something else if it continues. Just as I was getting back on a full dose, I developed shingles which took them a while to diagnose. It has been real painful (caused by the same virus that causes chicken pox) but I think I got it treated before I broke out too bad. I am getting over that now. It seems as if it is just One More thing! I hate this disease too. Just the not knowing part of it, what's going to happen tomorrow and all. But we have to not let it beat us down. Look for something positive. On a positive note, one thing that I was told on the injection sites was to use aloe vera gel, either the kind for sunburn with xylocaine or just plain. It has seems to make the spots not quite as red. I rub it on after each injection. The nurse said it conditions the skin more than anything. My injection sites seem to take forever to heal and some are worse than others. I just never know. Some are raised like welts, some are not. I have not found a sure fire way to make them go away quicker. But I keep a log so I can seem if soem thing works better. I will pass it along if anything seems to consistently work. My hair has thinned too but I also have super thick hair. It can stop anytime now. I have never injected in my arms. It just seems like it would be painful. I guess though if you use up all the other spots, you would have too. I don't know if I posted it here or not, but my msot recent mri came back with no changes after 6 months on rebif. I was ready to quit but that has encouraged me. Hang it there, Dawn. I hope tomorrow is a really good day for you.
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Postby DawnsBrain » Sun Jul 25, 2004 8:23 pm

Thanks lynn. I am so glad to hear about the good results on your MRI. As I mentioned I shoot the tube in the morning...at 7am so hopefully I can just go back to sleep once I get there.

I will let you know if I find anything that works on the inj site also.

If you ever need to just talk pm me okay. I will check in here to see how you and all the other biffers are doing.

I hope to not have to be taken off of this one and having to deal with starting another one either lynn. Hopefully we will both improve soon.

Have a good week!!!
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inj site recommendations

Postby guest » Sun Jul 25, 2004 9:43 pm

Thanks for confirmation on the contradictory info on inj sites! I was dx in late April and went on rebif asap, w/ 1st month at half dose. So I have been on full dose for 7 weeks now. My site reactions remain for several weeks, but only for about 1 week are they flaming red, hot, slightly sore to the touch and itchy. As long as they continue to eventually clear up, I will stick it out on the full dose.
I, too, have had thinned hair, as well as splitting nails since on rebif. I read on healthtalk that vit E and selenium might help so I'm trying that. I've lost weight too...altho I think it may be partially because I'm drinking fewer beers, eating less junk and trying to work out regularly.
(As for itchy...I was just out camping this weekend along with many mosquitoes and biting flies. The itchiness from the rebif doesn't seem so bad to me right now! )
hope everyone has a better week this week than last!
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Postby DawnsBrain » Mon Jul 26, 2004 9:10 am

I have also experienced the splitting nails! I've never had the strongest of nails but, the way they have been since starting the rebif is something new.

I hear you about the sites not being as bad as the itchies from the bites!!! LOL

I will stick it out on the Rebif as well unless the doc tells me diff tomorrow at my appt.

I am starting to think the hives are a reaction from the sun exposure(there was not much time I did not spend out from under the rented umbrella!)and my meds combined??

I shot the tube this morning and slept through the last 20 minutes of it. LOL It's ashame when we can anticipate the next sequence of knocking while in that thing ....there is one that makes me get so sleepy.

Hope everyone has a GOOD week!!! :D
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Injection Sites

Postby oreo » Thu Jul 29, 2004 3:51 pm

Just started Rebit 12 July (dose 20%). First shot with auto-injector in arm.
I will never and I repeat NEVER do that again. Hurt like hell and my arm wasn't quite right for days.
Next 2 shots in the rump-roast. Seemed to work OK (still using auto-injector).
Next 3 shots in abdomen (above navel & waist-line) using auto-injector. All 3 sites still red, 2 bruised, all itchy.
Next 2 shots - increased dose (50%) - back to the rump BUT without the auto-injector. Didn't even feel the needle going in - and the first time Mrs. had to stab me twice. Still get the burning sensation as the solution is being injected but it did feel a lot more human that the injector whicj just seems to ram the serum into the skin in a nanosecond.
Rumps sites have shown a little redness, no itching, no trace after a few days.
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Postby DawnsBrain » Sat Jul 31, 2004 2:59 pm

oreo...so glad to hear you are having a better go at it with the Rebif.

I am an autoinjector all the way but, you know, so many have said the manual hurts less I may give this a go. The site reactions I've been having lately are just way too much to have to deal with and then have to inject again and again and again!!!!

I am going to have the hub hit the rump roast when he gets in next week and see what the diff is. I have a site on my hip that is one week old that is still not happy with my body.

I finally got the other sites that I stupidly put cortisone on to simmer down and clear up. Sheesh....that was an ordeal esp knowing I did it to myself by using the cream on myself. I have had some luck with the Benadryl gel on some of my sites, was using witch hazel but, it is so drying that I looked like I was developing a dry skin situation.

I turly hate this disease.
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Postby DawnsBrain » Sat Jul 31, 2004 3:03 pm

I rec'd a good MRI report earlier last week.....0 new lesions and no lesion activity!!!!

Is it the Rebif, who knows really but, I guess I am stuck using it for now since it was a good report. It really is a pain using it b/c of the random site reactions and just the pain of having to inject meds.
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good report

Postby lynn45 » Sat Jul 31, 2004 7:55 pm

It was good to hear that you got a good report on your mri. I just had one, the first since 6 months of rebif, and it's the fist one I have had in a while that showed no new lesions or activity. I am like you....maybe it's the rebif.????...I guess it has encouraged me to stay on it though I really hate the site problems, other symptoms have gotten better over time, just site problems now. I keep hearing that the shots are less painful without the autoinjector. Just don't know if I can do it or not...I may try though. Hope this finds you well.
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Postby carolsue » Sun Oct 17, 2004 10:00 am

New Rebif formulation is supposed to be out that has a higher pH and therefore should sting less. Anyone gotten it yet? Also it's supposed to be coming with a smaller needle. I'd appreciate hearing reports. I have about a 1.5 month supply of the old stuff to use up first.

FYI, I saw a MS specialist last week who seemed to think that Rebif was the best of the interferon therapies. He seemed to think it's because of the frequency of administration more so than the dose.

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