Hi Silent Warrior. And by the way, thanks for the compliments on the other post you responded to...
Yes, I use Rebif. And, as most people know here, im a huge fan! Ive been on rebif for about 4 years now- and YES its working! I was dx with MS in under 2 weeks...I had that many lesions (over 50) and that many symtoms...and they all came on at once. (either that, or I got tired of ignoring them and noticed them all at once) Either way, I can answer your questions.
Rebif is the strongest of the interferons. Its the exact same drug as Avonex, however its stronger because it is given 3 times a week. Avonex, being once a week, was causing some patients to have "withdraw" effects...feeling like they "needed their shot", so Rebif was developed to be given 3 times a week in order to better keep blood levels stable. Avonex is still a great drug for some, however if your doctor is looking to be aggressive, like mine was- starting you on Rebif is a good idea.
yes, the first few months were hard. Rebif comes in a titration pack. You start with 14 mcgs of the medicine for 2 weeks- you wont notice any side effects...then the next 2 weeks are 21 mcgs. You might have SOME side effects...then, you get to full dosage, which is 44 mcgs. At that point, the side effects kick in, and you will have been doing this for a full month. FOR SOME PEOPLE- THEY DONT HAVE ANY SIDE EFFECTS AT ALL- but thats not the norm. Most of us have to adjust to the drug...
SO what to expect? When I hit 44 mcgs, I spent nights in the bathroom, feeling nauseaus and sweaty, and sometimes dizzy. Keep in mind, I was going to college fulltime, working fulltime and had just inherited 3 stepkids who moved in with me. And I handled it! Its not the end of the world, but I will admit, there were a few nights when I figured dying was better then Rebif...and most of my "poor me, I have MS nights" came from shot nights..
The good news. It only lasts from about 2 hours AFTER you inject for about 6 hours after that. If you can get to sleep, you wake up FINE. People adjust to Rebif much quicker then Avonex, becuase it is given 3 times a week, your body gets used to it faster. The side effects do not happen randomly...so the 4 nights a week you DONT inject, no side effects! The nights when you inject will go by quickly...and even better news- I have some great tips for you to help you thru it. Stuff I had to learn by myself thru trial and error, and Ive passed these tips on to alot of new users, all of whom agree- they make managing this much easier.
One of the unusual side effects of Rebif is the first few months, your liver enzymes can spike. Mine did. A smart Neuro knows this, and will test your blood every 3 months....should it spike, they will probably test you again in another 6 weeks. NORMALLY, they come back down to normal. Its not a problem if your liver enzymes spike, as long as its a very temporary thing and they return to normal within 8 weeks...the body DOES adjust to the drug under 99% of cases. Ive only known one person who had to stop Rebif, due to liver problems....its NOT unusual to go thru it, but like I stated, its usually a short term thing.
More good news. Rebif has the highest track record of lessening new MRI activity, and preventing relapses. For me, I get MRIs every 6 months. Both brain and spine, both with and without contrast. I have NEVER had a new lesion develope! So , its working....and another bonus. Rebif gives me a burst of energy. I have to do my shot in the AM, because if I do it at night, I cant sleep....after 4 months on the drug, I noticed that I wasnt so fatigued, so sluggish and even my mind became sharper again! It was a miracle called Rebif!
So, how long do these nasty side effects last? For me, about 3 months after they started 4 months into taking the shot....keeping in mind thats only 12 days a month- it wasnt the end of the world. Funny story. I was in Mexico. I had forgotten to do my pre-injection pill (for me, tip #1, Aleve works best)....I had been by the pool and ocean all day, was in the room getting ready for dinner and decided to bang my shot real quick. It wasnt until I was being seated at the table when I realized I had forgotten to take that Aleve. I figured "thats it" the rest of the night will be shot.....but it wasnt. I realized as the hours went by that I felt fine. Really fine. I even celebrated and had a glass of wine...or two. But, absolutely no side effects! After that I tested myself each shot night...to see if and when Id start feeling sick again, it never happened. once your body gets used to the drug, thats it!
So, thats the beginning...Im sure youll have 100 more questions, and Im here if you need me....but I think its a good decision, if your doctor is suggesting Rebif, give it a try.
I was diagnosed with MS this past July and have been on Rebif since the early November. Tonight will be my first shot at 44mcgs. I only had one slight reaction on the 2nd shot at 22mcgs-chills, fever, feeling like someone beat my entire body with a board.
Thanks Nikki for all your tips-I have them written down and will let you know how it goes
Good luck, Mary! Keep us posted! I actually have a ton more tips for avoiding the redness that sometimes accompanies the shots- for pre-injection meds and heat vs ice...let me know if you need any help.
Good Luck Mary. I have just started on Rebif so I really can't help much. The first few shots weren't so bad. I just had the first 22 shot last night and did not feel very well today.
I am just trusting Nikki and hanging in there for 6 months before I quit. I do know that her advice about taking the shot before bed and taking Aleve helped with all of the shots but the last one. I am hoping this was just a one time thing and that tomorrows won't be so bad.
Also the site reactions have not hurt, just look bad.
Well I made it through the night. I have to give my injections around 5-6 because I usually get insomnia. The injection site hurt for a good 30 minutes but it went away. So went to bed around 9 with no problems. Woke up at midnight with the terrible chills. Managed to fall back asleep. 3am raging head ache, popped another Aleve and back to sleep. I was pretty much uncomfortable most of the night but if that is the worst, I'll take it!
Hey Mary- thats actually pretty much par for the course. Taking one Aleve, 1/2 hour before the shot seems to be the best way to handle the pre-injection. Because its supposed to last for 12 hours, its not going to hurt you to take another one if you wake up, or cant sleep- 4 hours or 6 hours later...however, another trick is to take the Aleve first....and then, if you wake up, take ONE Tylenol PM. The antihistimine in it, will help you sleep thru the rest of the night. You can mix these two drugs...
Tip two- the shot, and make sure you arent injecting too deep. If you are using the autoinjector, you might either have the setting too deep, or you might be pushing too hard on the injector when pushing the button. It shouldnt hurt afterwards....so look into that. Tip 3 is massaging the area afterwards. I have told many people this and only one hasnt found it to be helpful. Look into Arnica Gel. Its found in any healthfood or grocery store with a natural foods section. Its a tube, looks like toothpaste- and is very inexpensive. Arnica is a natural root. The gel form gives you slip (like Aloe)and is easily massaged into the skin within a minute and dissappears. The Indians used it for redness and bruising- and it really is a great thing to massage your injection spot with right away, after the shot, to help disperse the drug and avoid the red "bullseye' that sometimes developes. I use it the night of the shot and the next day, when I get out of the shower again, and I rarely get the redness. It also gets rid of soreness.
Ill stop there. Your symtoms dont sound unusual...and now that you are getting them, you are that much closer to having them stop completely and on the road to taking control of your MS! Look at it that way, by doing this to yourself (the shots) you are taking control of your MS and its not taking control of you!
Wishing you continued success with this.
I have been on REbif for 6 years now with no major problems. I am curious about something though. When my husband gives me my shots (I am too chicken) It stings really bad for about 20 seconds and I have to sit still for about 5 minutes or it burns. Is this normal? I still sometimes get chills 2 hours after injecting but they go away after an hour. And headaches, Yes almost every morning after shot but I take tylenol and I am fine.
So even after 6 years I am not sure it is working but I am willing to take a gamble rather than do nothing.
Rebif does burn when injected, however if you massage the area thoroughly after the injection, the medication should disspate and the burning should stop within 30 seconds. I always suggest to massage Arnica into the skin, which helps relieve the bruising - or red marks sometimes associated with the injection. Arnica is something someone told me about a long time ago, and Ive passed it on to many people , who all seem to think it helps.
also, are you using heat or ice before the shot, and are you wiping the area about to be injected with alcohol? If you are using heat- try ice. If you are using alcohol to clean the area with, trying letting it dry a minute longer before you inject. Injecting into alcohol ALSO burns! I also find that an ice pack for a minute or even 30 seconds, AFTER the shot helps it to feel better instantly.
As for the headaches- I cant imagine that they are Rebif related after 6 years....but I guess anything is possible. As for if its working or not- you should be the judge of that. How are your MRIs/ Im assuming you get at least one a year...and are you progressing? Do you have new symtoms that you didnt have 6 years ago? One or two? Or a whole bunch? If you are - for the most part - Stable, then YES its working! The idea isnt to stop MS but to stop new Lesions from forming and to stop progression, thus also hopefully stopping new symtoms (which are usually associated with new lesions). That being said, I really hope youre stable!! And youll tell us more about how youre doing on the drug.
I think its neat that your husband does this for you. Mine used to- until that first time he had to work late, and I was terrified of the fact that he was starting night shifts for awhile..so I learned to do it myself and have never asked him again! Make sure in an emergency, that you- or someone else you trust, can do this for you. I would hate to think youd miss "shot night" because he wasnt available to do it...
I have been on Rebif for years. I started on Avonex and eventually this didn't work for me. Most nights I don't have problems with my Rebif injections.
Your injection site will get sore and it will get red and it will stay red for weeks. You can try ice before and after the injection, but I got tired of that so I just grin and bear it - the pain only lasts a few moments.
I live in the Seattle area, I find when it is raining I can bet that I am going to have a tough shot night with chills and little to no sleep. When I say tough I mean there are nights when the shakes are so bad that 2 down comforters aren't enough to keep me warm. I take several baths on these nights as not only am I cold but I ache, my teeth hurt, my nails hurt, everything hurts. On these nights I take a Vicodin an hour before the shot to relax myself. Then after I take the shot I take my normal bedtime pills in addition I take Ambien. Any other nights I just take Tylenol an hour before the shot and take my normal pills at bedtime.
I find Rebif's side effects are better than Avonex for me. I hope this helps. Take care,
I haven't been able to get on the boards lately so being able to catch up on this thread has been very informative.
I begin the shots in a week and yeah I am a bit nervous but I self inject other meds for another condition that I have so its not the injecting that makes me nervous but rather the reaction to the med.
On the bright side things should get much better in 4 months right? I will just keep telling myself that.
Hey SW. Yes, for 99% of us, about 4 months into it, youll see significant improvement. In fact, Ive never heard of anyone who didnt eventually get used to the shots and stop having side effects completely, prior to the above posters Post.
You know where to find us when you have questions....wishing you only the best experience with Rebif. Happy New Year.
Thank you MSNIK for your response.
I do give myself the shots in my legs but not my stomach or bottom. I do not do the arms. So I can do it I just dont like to.
As for Rebif working, I do get MRI's every 2 years and some new lesions always seem to come up. Not many but still one or two small ones. My neuro has suggested Tysabri but NO thank you. I feel okay otherwise. Once I hear about some things that some people go through in life I always thank my lucky stars that this is all I have. Sounds funny right. I am sure you understand that. I will try the arnica and see if that helps my injection sites. My body is so red and blotchy I will not be wearing my thong bikini on my cruise this month. Ha Ha.