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Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/31/2007 7:44 AM (GMT -6)   
please can anyone give me experiences on rebif-- how is the shot -- side effects etc
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 7/31/2007 8:14 AM (GMT -6)   
Just as each individual experiences different symptoms with MS so each individual experiences CRABs differently. That said, my own experience included increase in pain with shot, where was dependent upon location of shot. I have found that I am extremely sensitive to any medication. Rebif was the same. If I took the shot in my buttocks the pain flare was in my leg and foot. If it was in abdomen then odd sensations would occur in my face or arms. I also had the "normal" flu-like symptoms each night which, luckily, I slept through. But the worst "side effect" was that each symptom I experienced grew worse as I continued with the 44 mcg shot. I finally had enough and took a week off to think it over. I felt better with each rebif-free day. I am now on copaxone and so far the only side effect is a small lump at the injection site.
copaxone 20 mg; baclofen 5mg 2 x, lyrica 100 x 2, ambien, too many vitamins to list!


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/31/2007 8:33 AM (GMT -6)   
i knew i would hear from you first madlou-- yeah i did copaxone already adn have tissue damage from it and lots of yuck side effects from that -- i too am very medication senstivie so i will just refuse to go on rebif-- suprised they even suggested it to me with all the trouble i will switch neuros if i have to-- not up for my life worsening from another med-- thanks mad lou

Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 7/31/2007 9:03 AM (GMT -6)   
I tolerated the 22 mcg of Rebif fairly well but wasn't on it for very long before they bumped it up to the 44 mcg. You might want to try it at the lesser dose, just to see. I'm already questioning copaxone and took today off. I'm not certain I want to take medications which only have a 30% efficacy with the hope that I might be one who will benefit in the future. The side effects affect my quality of life now. I could get hit by a bus tomorrow! Ya know what I mean? I'm seriously looking at LDN and prokarin. No injections and apparently no side effects. I'm concerned that I'm just a cash cow to the medical community.
 
copaxone 20 mg; baclofen 5mg 2 x, lyrica 100 x 2, ambien, too many vitamins to list!


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/31/2007 9:33 AM (GMT -6)   
oh madlou you are my new bestfriend -- we are so on the same page i am looking into ldn mostly-- but i would have to find a new doc who will do it-- let's talk more-- copaxone was so tough on me-- the sites just got worse ans worse-- and i am not up to going through this again-- having ms is hard enough -- i  haven't heard of the other med you mentioned what is that
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 7/31/2007 9:46 AM (GMT -6)   
http://www.mymultiplesclerosis.co.uk/prokarin.html

Prokarin is another alternative medication that the drug companies won't mess with. Not enough money involved. Google Elaine deLack. Look at the interviews with her. She has MS and has some interesting theories concerning our condition. Also, check out goodshape.net. Let me know what you think.
copaxone 20 mg; baclofen 5mg 2 x, lyrica 100 x 2, ambien, too many vitamins to list!


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/31/2007 4:56 PM (GMT -6)   

well sadly my neuro looked at me like i was a total crazy person when i asked about ldn and antibiotics and stuff-- i really am interested in ldn but need a nuero to prescribe adn a pharacy to do it-- my neuro is a brain tumor specialist so he is having me meet with the ms specialist at the center august 14th-- in the mean time i see an infection specialit on thurs and will have the results of lyme tests by early next week-- so i have just been limboing out here adn looking at ms therapies-- i agree about the quality of life thing --- shots were just killing me -- at first they weren't bad usually side effects get better not worse now i am left with tissue damage and had gottem sick of post site injection reactions where my poor husband thought i was dying so they finally took me off copaxone for good but now are saying maybe rebif-- and this time i am saying no way!!  i was thinking maybe tysabri but ldn is my first choice-- i just need help--

 

please if anyone is having a super time on rebif let me know i am wrong--


Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 7/31/2007 5:39 PM (GMT -6)   
Zoe, I was wondering how long you were on copaxone.  Barb

Barb/mystery reader
Diagnosed April 2007


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/31/2007 6:44 PM (GMT -6)   
barb-- the frist time i was on it was for about 3 months but i had a post site injection reaction that was serious enought ot send me to the emergency room needing oxygen-- but the second time i was on it for about 3 moths again-- it was making me worse and my body was allergic-- i hope it works for some people cause it seems like a great concept for fighting  the disease -- it just didn't work for me

Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 8/1/2007 3:49 PM (GMT -6)   
Zoe and madlou
 
Any Dr can rx the ldn.  My lyme dr does even though I am taking it for MS.  LDN has many uses. Best to find a Dr who is open minded.  I have not found any neuros to be, and I have seen many.
 
Another way might be to call the recommended compounding pharmacies from the ldn website and ask if any Dr in your area use their pharmacy for ldn. Then call those Drs.

Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 8/1/2007 7:26 PM (GMT -6)   
thanks kimc for the info-- i am in the works on it and are grateful for you suggestions

Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 8/1/2007 7:54 PM (GMT -6)   
Hi Zoe,
I am on Rebif and having excellent results. I feel real good. It has been almost 6 months and the neuro said give it 6 months to a year. Well, i feel good most days. Of course i have my bad days, as to be expected i guess, but i am starting to feel a little bit like myself again. Is it me just taking a long time recovering from my last flair or is it the rebif, i dont know but i'll take it. I had such a hard time for so long before dx that i will take any relief i can get,lol. All kidding aside, the rebif gave me the flu symptoms, but they have subsided. I wasn't pre-medicating, which i should have been. I do now and i really do not get any more side effects. I was getting red welts also. They were not raised, just red, but i do not get them anymore either. I think my body is used to it now. I do the injections at night around 9 pm or so, so am i sleeping thru them, i dont know, but god knows, i am up 3-4 x's a night going to the bathroom, and i really dont feeel sick, so i do not think so. Well if you would like to talk, my email is on here, feel free. I think you should give it a try, you never know!
Love and Prayers,
Lynn
Dx Dec 06, Rebif,44mcgs 3 x wk, Baclofen


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 8/2/2007 5:44 AM (GMT -6)   
kimc-- how is the ldn for you-- would you way it helps?
 
lynn-- thanks you for your input on rebif-- i will take it all into consideration
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 

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