Hey all. So today was my first Rebif shot and I surprised myself (and my husband) that I was actually able to do it...and I did it manually. It was only the 8.8 mcg and I did not have any side effects at all. I went about my day as usual and did not notice a thing. I wish I can be so lucky when I go up to the 22 mcg.
Can anyone provide some experience on going from the 8.8 to the 22? Did people who didnt have side effects on the 8.8 have any on the 22?
Well so far so good. Take care.
The following user gives a hug of support to KingBaxter: music47 (06-15-2011)
Hey King baxter congrats, Well I am on my 4th 22msg and so far just hot flushes every now and then , I have noticed that the injection stings a bit more but only for a split second and sometimes a dull headache but nothing much .I do have site reactions and these have been after every shot but they don't come up for about 24 to 48 hours and some have stayed 2 weeks they are small red marks they do not hurt and they are not raised . I have two more then on to 44 holy hell that scares me.
let me know how you go
congratulations King Baxter! Its a huge deal that you did this. I personally prefer doing it manually...you have more control, its easier to do and it definately doesnt leave the site injections that I have found with the autoinjector leaves..
I remember going from the lowest to the middle dose without any problems at all, no side effects until i went to 44 mcgs..and those, well, they were just like they told me they would be. Flu like symtoms..they didnt last long, only about 6-8 hours after the shot and if you can sleep thru it, youll wake up feeling fine....after about 2-3 months on it, they go away entirely, never to return.
I had my Neuro appt today and Ive been on Rebif almost 6 years now...Im still stable, and doing incredibly well. We talked about switching me to Gilenya and my doc advised against it...he still thinks Rebif has the highest efficacy and is helping so much - why change. So Ill be banging Rebif along with you for a long time to come!
Best to you..
Thank you both. as of this morning no mark at injection site...but i just got home from work and i can see an extremely faint red circle about the size of a quarter. hope it doesnt get worse. now i just have to plan the injections more strategically because we have a vacation to aruba coming up -- yes before i was diagnosed we booked a trip to aruba during the hottest time of the year. great. i havent had any sensitivity to heat though so i hope it doesnt act up.
tomorrow is my second shot. i am definitelty going to try it manaually again. after i did it manually, the nurse showed me how to use the autoinjector and i am now more scared of that! it was so loud!!
Congratulations!!!! Getting through the first shot is a big deal...so happy for you. I was on Avonex for 4 years. I switched to Rebif last October. I still have flu like symptoms, but not bad. If I don't take my Advil/Aleve, I get very achy with some chills. Nothing really bad, just noticable. I quit injecting in my stomach because it left site reactions. Now I just do legs, arms, buttocks. I wish you the best. Enjoy Aruba...you'll be fine...just stay around the water and keep hydrated.
I was going to say the same thing...youll be fine in Aruba as long as you can cool your body down> I was there last Mayl, and it was in the 90s. I spent 50% of the time under an umbrella, the other 50% of the time in the pool or ocean, and I was fine! Hey, you EARNED this vacation! Anyone who injects themselves 3 x a week deserves to party for a week! Aruba is beautiful and youll have a ball.
You can also travel easily enough with your syringes. Just keep them in the sealed packets they come in and rip the prescription off the box end....where your name and doctor are listed...and carry it in your carry-on bag. I always keep mine in the roof safe , unrefrigerated for the week and Ive never had a problem. Only once, in St Lucia, did they ask me when I put them thru the Xray machine, to pull them out and they verified the drugs matched the prescription...Ive traveled to Europe and the middle East and less of a problem then I did in ST Lucia....Aruba, no problems at all....
One warning- this is UNofficial....most people I know who are using Rebif have agreed with me on this, alcohol seems to go to our heads faster...I used to be able to have 2-3 glasses of wine and still be lucid...now, after 1 glass im buzzed! I honestly think this started after I started Rebif. My Neuro has confirmed to me that he hears this all the time...so if you are a social drinker, be careful the first few times to see if this affects you as well...
Congrats to you and quarter sized red marks are about the norm...unfortunatley as one fades, the next one appears. It usually takes 24 hours for them to show up, and another 24 hours for them to start to go away. I call them my bullseyes and wear them proudly.....you get used to it afterawhile and also having a tan helps to camaflouge it. Even in the winter, I use self tanner on my arms and torso to make them less noticable! But honestly, so you have an injection mark....as long as they are not raised, fluid filled or itchy- they are simply irritated..as your body gets used to the drug, they will be significantly less....promise!
Hugs and congrats again!
I was wondering about the alcohol thing...because I am very seriously concerned about that. I do like to have a few drinks socially and especially on vacation at an all inclusive. That's why we booked it there! I'll have to do a few test runs befiore vacation. I'll report back on how it works out since I will be on the 22 mcg by then.
I had my first Rebif injection two days ago (in my quad), and didn't notice anything remarkable afterwards. I suppose 8mcg isn't enough to produce noticeable side effects yet.
Like others in this tread, I drink on occasion, but have yet to have any drinks while on Rebif. I suppose I'll see what happens when I go out to a bar next.
Question on traveling with Rebif. Do you take your needed dosage and just stick it in the little travel bag (right up against the cold pack)? And the 'prescription note' you carry with you is the 'prescription notes' paper with the yellow sticker?
Depending on how long you are traveling for, I sometimes dont take the ice pack- it makes more of a mess in my travel bag! You CAN leave Rebif out for up to 30 days (so you know) so it doesnt have to be refrigerated. But if you feel better, than no, put the ice part in the one section and the syringes in another section, you do NOT want it to get frozen. If the Rebif is up against the ice, it COULD freeze and that could render it inefficient.
The prescription is the part off the box which has YOUR name, your DOCTORS name and the name of the drug on it....it should be current, not expired. I have had my doctor write me an undated prescription which says "Patient carries Rebif 44 mcg syringes while traveling for treatment of Multiple Sclerosis". Of course Patient, is actually my name....I travel constantly, this undated script which I keep in my travel bag, is always "good" and I dont have to worry about ripping off any of the boxes! Hope this helps
Congratulations! I've been injecting now for 2 months and certainly understand your initial apprehension. I am still getting used to it and have not been able to manually inject yet, though I might since according to you guys, it doesn't leave site injection marks. I use to numb the area first, but that seemed to make it worst. The last two times I did it without numbing the area & it wasn't too bad. I take a 800mg ibprofen before injecting so I have not experienced any flu-like symptons. I tried injecting one time without taking the ibprofen & felt a little nauseous but that was all.
I'm trying to think about the this one day at at time because the rest of my life is a bit stressing! I'm going out of town in a few days and I have to prepare to travel & inject while on travel. I did it once before already & it went ok so I'm sure this time will be fine too.
I'm scared to manually inject....I have a hard time pushing the button for the autoinject much lesss pushing into my skin myself
Thank you for your post Lilbit! I just wanted to say that for me, I am having injection site marks whether manual or with the auto - I have only done the auto once. The first one didnt show up for almost 2 days and its now a week and still not gone. Ughhhh.
I am trying to get used to manual before I start relying on the auto. Believe me, I understand your fear. I cry when I have blood taken or an IV put in my arm. I am truly terrified of needles. I have done 4 injections so far and used the auto only for the one on my butt since I couldn't reach. When the MS lifelines nurse came to my house to show me how to do it, I started crying when she said she wanted me to do it manually. I thought I would just try with the auto. She said she wouldn't make me do it if I didn't want to but that I would never be able to do it manual if I didn't try with her there. So I "manned up" as my husband likes to say , and I just did it.
My dad is diabetic and takes 4-5 injections a day. He told me he felt the same way when he first learned he had to inject himself and now its just like nothing.
I do it as soon as I get up in the morning - this way there is no time to think about it and start dreading it. I need to start thinking about this one day at a time myself, because I am already thinking of how many shots I have to give myself in a year, my whole life, etc. and its seriously stressing me.
Thank you again and good luck!
The Following User Says Thank You to KingBaxter For This Useful Post: LILBIT86 (06-22-2011)
I certainly understand your apprehension about having to give needles, I too have only been doing this for a month in fact just had my first dose of 44 and so far nothing it did not hurt in fact less than some of the others over the last month and no side effects so far except a slight headache the morning after,however it may not mean that the next one will be good for me also it sounds promising . I drove myself insane thinking about when the dose went up but it came and went just like the other shots. Its funny I no longer worry to much about the needles. I have very small injection site reactions not raised and not sore some have gone quicker than others.
The Following User Says Thank You to zadie For This Useful Post: KingBaxter (06-22-2011)
KingBaxter and Lilbit-
I just wanted to throw my two cents in and say congrats to BOTH of you! As a fellow Rebiffer, I learned how to do the manual shot from my nurse as well..and then went on to go thru 3 different types of autoinjectors, THey bring out some, and retire them, bring out others and change them again! Honestly, learning how to use JUST the syringe is really helpful. You can throw it into a pocketbook or backpack easier- you can certainly travel with it easier- and it gives you piece of mind that you can do it alone....
King, the only place I cant do it manually by myself is my under arm area...I have to use the autoinjector for that area or have my husband inject it for me. My butt, I have found a way to reach! (I just go lower and to the side).
But really I just wanted to throw some hugs and love out there to both of you. After 6 years on Rebif, I am still stable and wouldnt even consider changing drugs..I hope you both have the same success I have had!
Congrats on making it to full dosage. Hang tough! Not everyone gets the side effects, and even if you do, you are almost to the point where they will stop completely. As KingBaxter said "we have to manup" and get thru it! Once they stop, they stop forever! Congrats on making it this far!
RRMS- dx 05
Last edited by MSNik; 06-22-2011 at 04:10 AM.
The Following User Says Thank You to MSNik For This Useful Post: KingBaxter (06-22-2011)
Hi King! I'm so happy for you. I know how difficult that kind of roadblock, so to speak, can be. You must be over the moon to have hurled over it!!! I was on Rebif for a while and didn't have symptoms until I moved up to the higher does. I have bad flu like symptoms so I took that shot at night, along with 4 Ibuprofens, and I can sleep thru the night. Without the Ibuprofen, I have terrible pains/aches. Good luck to you - hang in there!
Congratulations King, I am not as brave as you, I've been able to use the self injector but am too chicken to not to use it. I have been on vacation for 2 weeks and had my sister who is a nurse inject me since Nik had said it helped with her injectin site reactions. She only did my arms but I have to say that I don't seem to have nearly the spots, I'm going to have to see if I can get the courage to go without the self injector since for me it does seem to help not to use it. I am now on my third month of rebif and have not suffered too many other side effects but I was on betaseron before the rebif so maybe my body was used to the inerferons.
I too seem to have more balance issues with alcohol, I just thought it was a side effect of MS but maybe it's the interferons, I experieced this while using betaseron.
Sounds like this a group of us on Rebif, it's nice to have a forum like this for advice.
One thing that has disappointed me a bit, when I first started using the Rebif a nurse was calling me about every week asking me how it was going. As soon as I got up to injecting the full amount I haven't been called at all. When I was on the lower strength I was't having the skin site reactions but once I was up to the full strength that's when the skinsite reactions got more severe. The nurse told me she was going to all me in about a week but that was 2 moonths ago. Not sure if she no longer works for the company or what but I was inititally impressed with the makers of Rebif now I'm not so sure.
Keep up the good work everyone, it seems there are alot of brave souls battling this disease.
I just wanted to say Im glad to hear that your sister injecting you helped with the redmarks. I honestly have found that when I self inject, its so much easier on my body! Less red marks and less pain! The stuff does burn when you inject it!
Also, on the nurse issue...I had the same experience. The first month, they called weekly, then it slowed down. By the time I got to the fulldose, I wasnt hearing from anyone....I did call MS lifelines and ask....and after that I started recieving calls about every ten days or so, but honestly, I think with the number of people starting this drug, there just arent enough field nurses to really keep in touch with us all. Unless they hear from you, or there is a problem, they assume everything is fine. The nice part is, even at 4am, you can call and connect with someone- someone is always there. You should also be able to call whomever supplies your drugs....for me its Caremark phamarcy. They have a pharmacist who is pretty knowledgeable 24 hours a day.
I just got my blood work and tests back from the end of my 5.5 year mark on Rebif...Im as stable as ever....yeah REBIF! I have to attibute it to the drug- Im put myself thru way too much with grad school and a demanding job and family, to think that I could do this without it! Stay strong! And dont worry, youlll learn to self inject sooner or later! Get your sister to teach you on your thigh, thats the easiest place to learn!