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I would like to hear how people are doing on Rebif.
Posted: Tue Dec 30, 2003 8:16 pm
I was on Copaxone 11/02-11/03. I tolerated it very well and my repeat MRI was very good. Neuro was quite impressed. Unfortunately I then started develping hives, which were later attributed to the Copaxone. So, I was just switched to Rebif.
Posted: Tue Jan 13, 2004 9:26 am
Hi, I've been on Rebif for a little over a year and I think I'm doing ok, so far. I did have a relapse in Dec. but it only lasted about 2 weeks and I don't think I'm much worse because of it. I was on Avonex when I was first diagnosed in 2000, but I had many relapses, was on steroids and had to do therapy. I was fetting progressively worse. After switching to Rebif, I seem to be holding my own. So far, so good. Nancy
Posted: Tue Jan 20, 2004 2:00 pm
I've been on Rebif for a year and a half now and the results have been very impressive. I was having 2 or 3 severe attacks a year before now I've just had one short mild one in neary 2 years. Just wish they had put me on it years ago instead of sitting round a table talking about it.
Posted: Mon Feb 02, 2004 9:31 am
Been on rebif for 6 weeks so it is to early to say how I will do. Was on Avonex for a year and did good on it to I wanted a shot that my husband could give so we switch and I don't have to rely on anyone but him.
Posted: Mon Feb 02, 2004 6:46 pm
I have been on Rebiff since diagnosed in early September. So far no relapses or side effects from the rebiff. I am doing well.
Posted: Sun Apr 11, 2004 3:24 pm
been on rebif for one year no better no worse.
Posted: Tue May 18, 2004 10:38 am
Well, Rebif made me feel like crap. I developed an allergy to it after 3 months and I was taken off it. Now I cannot take any of the ABCR's. I am hoping Antegren will get approved, so that there is somthing else I can try!
Posted: Tue May 18, 2004 3:13 pm
I've been on Rebif for over a year and have had no significant relapse in that time. I have had increases in neuropathic pain, but doc says that isn't a worsening of the MS - that it relates to past damage.
How I am doing on Rebif?
Posted: Wed May 19, 2004 11:05 am
I've only been on the full dose since April 11 this year. I have noticed the sensory issues have calmed down a lot. No internal vibs-- tingling, crawling,itching have decreased. More fatigue, but I credit that to adjusting to the interferon. Provigil is helping a lot. Trying to focus on the long term, and being proactive in my treatment.[/list]
Posted: Thu May 20, 2004 6:00 pm
I've been on Rebif for almost a year now. I began in July of 03. In April 03 I had had a relapse involving spasticity, gait, balance and numbness in the left leg and a little in the right leg. I had only had symptoms four years ago (optic neuritis, tingling in limbs, numbness in feet...) and then my MS went silent. It was this last attack that got me the clinically definite diagnosis. I am following the Swank diet, too. I have not had new symptoms, but have not returned to baseline from my attack April 03 either, although I have come a long way. I, too, am tolerating the Rebif well. After my first day, I haven't had side effects (except some injection site bruising/redness).
Posted: Fri Jun 11, 2004 3:10 am
Hi, Iam a long-timer on Rebiff, nearly 3 years and considering coming off. Not sure if it is still doing something. Have had no major relapses but think I may have gone into SPMS as there is now gradual decline. The juries out on if it continues to work after so many years or your body gets used to it. Was at a local MS meeting last night and a local Neuro was giving a talk - he didn't seem to impressed but his main concern seemed to be cost! Still, he has a point if it costs a fortune and doesn't really do anything........watching Antegren and Caprivax.
Posted: Fri Jul 23, 2004 3:14 pm
Just had my first mri since starting rebif 6 months ago, and had 0 new lesions. Last two had showed more each time. While I can't be sure if the rebif is why, I am encouraged that maybe it is helping. I don't know if I would stay on it if it had been otherwise. It is easy to get discouraged with these injections..I still have pain and site problems on a random basis. Sometimes its easy, sometimes not.. Take care all and best wishes
Posted: Thu Nov 18, 2004 6:01 pm
My wife tried the rebif injector ...whew and that went like crap. Then we went to manual injections, that went better but site brusing was common. Then we found the answer to the rebif needle problem. Order yoursefl insulin syringes off the internet we use BD ultra fine either 29 or 30 gauge (30 is the smallest) 1cc size with 1/2 inch needle. I transfer the medicine from the rebif (dart ha ha) syringe to the insulin syringe. To do this, just pull the plunger out of the insulin syringe and inject the rebif into the insulin syringe. keep the insulin plunger in your hand so it stays nice and clean. Gently push the plunger back into the insulin syringe just a little bit just enough to seal it. The reason is you dont want to shoot your dose out the needle end. Now take the protective cap off of the insuin syringe and with needle pointing upward tap the air into the top then push the air out of the syringe. VIOLA now it is loaded. Once you get good at it you dont lose any medicine!! The insulin syringe is such a small needle she cant even feel it. as you inject it you can also slightly spin the needle as it contacts the skin. We came upon all this when we had a friend who is diabetic help us with the shots and she commented how hard it was to inject with the 44 rebif needle. See the manufactor made the rebif needle thicker to take the force of the self injector and they are two cheap to make the needle smaller for those who dont like the injector. BAD BAD
PS we have done this over 40 times with no problems. If any rebif gets on the needle during pushing the air out i wipe it with the alcohol swipe.
No MORE BRUSING.
Posted: Sun Nov 21, 2004 7:42 pm
Hopefully you saw the thread on Rebif and bruising. You should be receiving the new prefilled 29g needles by now. Much better, and much less painful.
Posted: Sun Nov 28, 2004 11:11 am
I switched from Avonex to Rebif after using Avonex for two years with no progression etc. After on and off compliance with the 3/wk injections, my 4th MRI since 2000 showed one (1) of the lesions I've had all along showing an increase in size. Not a huge increase but it was enough to be mentioned in the report. No new activity and nothing visible with the contrast. No changes in my EDSS scores either. The longest I went without the Rebif was about 3 months over the summer. I hate needles and was glad to see the FDA's early approval of Antegren although I'm going to sit back and wait and see the early "Guinea pigs" results after the 3 year study. I'm looking forward to the 29 ga. needles but I too wish they could also be shorter! I've got a 3 to 6% BMI (fat) and have next to no "pads" of fat under the suggested injection sites. I've on countless occasions administered 44mcg IM injections using the rebiject device. My thighs especially take a beating.
Back on the Rebif 'til something better comes along........
No relapses, no real progression, no hope lost!