Haven't posted in a while but have been lurking about. Good news for Nikki I see, congratulations. Wish that I could say the same. Just got back to my office after a trip to my neuro's office where I was informed that based on my last MRI and other indicators that there has been, and I quote, "significant disease progress". Drat. So it looks like going med free is not working for me. I think I have suspected that for quite awhile now but didn't want to believe it.
I am, after I get off here, going to see if my new insurance covers Betaserone as this is the med my neuro would prefer to see me on. If it doesn't then I will try the Rebif as it is a covered med. and my neuro has no issues with that one either. We also agreed that if the Betaserone doesn't work that I would again consider joing a trial that is studying Rebif and Campath. Not sure if they are used in combo or to compare them to each other, going to check that on the government site that deals with clinical trials.
Thanks for reading this, I'm just a bit bummed out right now, but it shall pass.
I am going to try the rebif and campath study. They are not a combo, I have all the paper work, you are on one or the other, I am hoping for the rebif if not then I won't go into the study. The campath scares me and I want to save all the stronger stuff for when I am starting to get really bad, but I got four new lesions while in the last study so nikkis news is very promising, hang in there since we are all in the same boat. My dr wants me on meds and I haven't had a relapse in four months since leaving the study but after you went for a year and then had one I guess I had better try something.
AAAH Neil, (and hotflash) Im so sorry to hear you guys arent doing as well as I am....it makes me feel bad, but Neil, weve been thru this before- you and me- med free, or not med free....trials or no trials.. I had no luck at all on the estrogen trial- it wasnt for me. I dont know anything about Campath, Ill have to educate myself on that one...Betaseron, I know alittle about, and know people on it who like it. The size of that needle scares me !! Its huge! However, it is also tried and true..and if you think its best to look into, then I wish you well....May I ask why you wouldnt go for broke? Rebif is so much stronger, and still given 3 times a week- less often then every other day like Beta....but with the stronger drug and the lesser side effects and the fact its covered- why not give it a try? Just curious..
whatever you decide- weve (I've) got your back....hang in there and keep the chin up, ok?
Sorry to hear about what your going through. I know that I have been on my copaxone for some years now. I started messing up on my shots a few years back. That was when I was working as a CNA, and then I became real sick with my walking and fatigue. I went to my neuro and had an MRI done,he looked at me and asked me if I was still on my shots. I couldn't lie because I could tell by the look on his face that it wasn't good. I had more lesions on my brain. So I know that after that I would never go off my meds again. I have never fully recovered. I blame myself because I had a great job working with the mentally chalenged and I was gonna go back to school for my LPN. I have never tried anything other than COPXONE. My neuro mentioned trying Rebif,not so sure though. Goodluck and GOD BLESS you are in my prayers.
Thanks to all for your comments and support.
My Rebif arrives tomorrow. Hope that the flu like side effect are no worse than when I was taking what I believe was Avonex. Being in a clinical trial I don't know for sure. I know this from having read the posts here that I will be buying some Aleve (right Nikki?) before commencing.
Hey Mitch don't forget the amica I think that's right.
I am trying for the same study of campath and rebif, seems like you and I are always in the same study mode. I just had all my labs and mri done, if it's not rebif I am not going in the study the campath scares me. Let me know how you are doing with rebif since that's what I'm aiming for
Hey ya Mitch, and Hotflash, too- its ARNICA hotflash- but thats okay, you would have found it in any health food or natural grocery store! Arnica is for massaging, to keep the brusing and redness down to a minimum. It works! And aleve, yup- still the drug of choice for OTC pre-injection meds!
Anyway Neil- sending you the very best of luck with this. I know how hard youve worked to stay Med free- and I know that this is the last thing you wanted to do....but honestly, I think this is finally going to be your year! No more trials for you....just do the real thing. Ive met so many men who are on Rebif this year- seems to be the strongest of the DMDs, but its also the gentlest when it comes to "getting used to the drug".....maybe its the 3 times a week thing, your body adjusts faster- but I wish you the very best with it.
Let me know if you need any help with managing Rebif...
Did my first Rebif treatment last night. Not bad at all. The needle is incredibly thin, no pain at all Did have a bit of an issue with the flu-like feeling, but since I took the injection prior to going to bed I slept through most of it. No injection site issues at all.
Hotflash, I couln't agree more in regards to Campath. The chance of getting that and not the Rebif was enough for me to decide to not join the clinical trial. I am fortunate in that my new insurance covers Rebif with only a $40.00 co-pay.
Nikki, its off to the store for the Aleve. The generic ibuprofen didn't seem to work very well, but it was cheap compared to the Aleve. This is a case where I really got what I paid for
Hey Neil, Ibuprofin is not Naprosin, the active ingrediant in Aleve..and it will do nothing for pre-shot injections....however, if worse comes to worse- Tylenol is better then nothing.
You got a slight reaction already? Are you titrating? Did you start with 7 mcgs? Or, did they start you full strength? That would be 44 mcgs..it would be incredibly odd for you to have a reaction if you are titrating. Ive never heard of anyone feeling "it" until they hit at least mid dose, which is 22 mcgs.
Let me know?
The needle being the smallest on the market is a huge difference, isnt it? And you wanted to do Betaseron!! Its the HUGEST needle Ive ever seen! Make sure you massage the area well and ice it before and after the shot for a minute or two (but no more then that) to prevent redness and what they call the "bullseye" effect...and if you do get it, it will show up 2-3 days post injection, last for a few days and then fade on its own (in time for the next site to show up!) Its kind of a never ending cycle- I do find that in the summer months, when I am outside more- the bullseye doesnt show up as much- but with my Italian complexion....its kind of a no-brainer.
i wish you welll my friend...keep us posted on your progress!
I know its been quite some time since I've been on. I used to access from work but I finally got so busy I haven't had much spare time. Once I get home I don't get on the computer much if at all.
Been on Rebif for just over a year now and its working great. No relapses. YAY! I was even involved in an accident last December. Guy in a pickup truck tried to cross two lanes of traffic in an attempt to reach a turnaround. I was accelerating as I was heading for an expressway onramp, WHAM, hit him doing about 45 mph. Lots of stress (spent a day in the hospital) and rib injuries but no relapse. How cool is that.
"I'm afraid I'm a little rusty yet." Tinman in the Wizard of Oz
Dx'd RRMS Oct.,2005