MSNik
02-28-2008, 04:23 PM
You'll notice both a question mark and an exclamation point at the end of my thread title..
Is it the Rebif which is working or the disease which ISNT progressing? OR is it the same thing??
however, I did have an MRI last week and saw both my Neurologist and MS Specialist in the last 24 hours. I didnt want to post until I heard from both of them and found out if they both saw the same thing. My guys DONT read the reports...they read my films To date, they have always been on the same page as far as what they have seen-
No new lesions, after almost 18 months on Rebif...
the new symtoms which I had mentioned starting, the migranes as well as the foot numbness- they both write off as simply symptoms, but not relapses. My eyes checked out fine, for once..my balance and coordination were better than 6 months ago when I was last evaluated.
I was given a nasal spray to try for the migranes- it kind of scares me- but I took the sample...
And, i was told that they are having alot of success with Cymbalta for pain and numbness. I was given a script, but Im going to ask you guys- who has used it and what side effects have you had??
Overall, thrilled to death that my MS is what they consider stable. I have to tell you, Im a fan of Rebif. I really am...whether or not my disease would be this low activity without it, isnt something I am ready to explore at this time, but overall, even with the headaches, the numbness and tingling- I know Im doing great- and that, is worth the tiny inconvience of a needle 3 times a week.
But, wasnt looking to just update, as much as ask about cymbalta and opinions...and throw the Rebif thing out there...just for an FYI.
hugs
Nikki
Is it the Rebif which is working or the disease which ISNT progressing? OR is it the same thing??
however, I did have an MRI last week and saw both my Neurologist and MS Specialist in the last 24 hours. I didnt want to post until I heard from both of them and found out if they both saw the same thing. My guys DONT read the reports...they read my films To date, they have always been on the same page as far as what they have seen-
No new lesions, after almost 18 months on Rebif...
the new symtoms which I had mentioned starting, the migranes as well as the foot numbness- they both write off as simply symptoms, but not relapses. My eyes checked out fine, for once..my balance and coordination were better than 6 months ago when I was last evaluated.
I was given a nasal spray to try for the migranes- it kind of scares me- but I took the sample...
And, i was told that they are having alot of success with Cymbalta for pain and numbness. I was given a script, but Im going to ask you guys- who has used it and what side effects have you had??
Overall, thrilled to death that my MS is what they consider stable. I have to tell you, Im a fan of Rebif. I really am...whether or not my disease would be this low activity without it, isnt something I am ready to explore at this time, but overall, even with the headaches, the numbness and tingling- I know Im doing great- and that, is worth the tiny inconvience of a needle 3 times a week.
But, wasnt looking to just update, as much as ask about cymbalta and opinions...and throw the Rebif thing out there...just for an FYI.
hugs
Nikki
Sponsor
tuckersmom
02-28-2008, 05:21 PM
You said it...it doesn't matter if it's the Rebif or the disease is not progressing...it is fantastic news and you needed it .....BIG TIME!!!!!!!!!
I was so happy to read that today. I am also curious about the Cymbalta. I have read lots of good things about it so will be interested to read what anyone says.
So, so happy for you dear friend:bouncing:
big hugs!
Lisa
I was so happy to read that today. I am also curious about the Cymbalta. I have read lots of good things about it so will be interested to read what anyone says.
So, so happy for you dear friend:bouncing:
big hugs!
Lisa
ShelleyTab
02-28-2008, 05:51 PM
MSNik - I just wanted to offer a congradulations! It's great to hear your doing well on the rebif and I hope it continues to work out for you!
Shell
Shell
MSNik
02-28-2008, 09:16 PM
Thanks you guys...wanna hear something amazing? ONE of the major warnings on Cymbalta is NOT TO USE IT IF YOU ARE TAKING MIGRANE MEDICINE! My Neuro gave me a spray for migranes, and my MS SPecialist was told that today, yet he still gave me a script for Cymbalta, for the nerve pain. Now Im all sorts of confused!
But, having read the Cymbalta information, I already know Ill never take this drug. Im pretty much anti-anything which has this many side effects. Besides, Ive lived with the pain almost 2 years now- its the migranes I can do without!
interesting...I had a strange feeling about this when he told me to try it..now, having read all about it, I can honeslty say Ill never filll the script.
Thanks though, appreciate your being happy for me about the MRI and lack of progression!
Hugs,
Nikki
But, having read the Cymbalta information, I already know Ill never take this drug. Im pretty much anti-anything which has this many side effects. Besides, Ive lived with the pain almost 2 years now- its the migranes I can do without!
interesting...I had a strange feeling about this when he told me to try it..now, having read all about it, I can honeslty say Ill never filll the script.
Thanks though, appreciate your being happy for me about the MRI and lack of progression!
Hugs,
Nikki
tuckersmom
02-28-2008, 10:51 PM
Nikki, I just got on line to tell you I looked farther into my medical sites about the Cymbalta and was going to warn you about all of the side effects and the migraine meds issue and all of the other stuff you can't use but you beat me to it.!!!! You're right..bad communication between the two doctors. I'm with you, wouldn't take either. I had a bad night last night with pain but everytime I look up one of the meds you can use .. there are just too many side effects, then you have to take stuff to help with the side effects.. It's never ending so I just don't get started.
Take care.
Lisa
Take care.
Lisa
MSNik
02-28-2008, 11:02 PM
You know you and I are cut from the same mold, right Lisa?? Thank you for caring enough to read up on it...
I think that this nose spray might actualy be worth trying- I mean seriously some of these migranes have brought me to my knees in pain...but Cymbalta, take it for a month and MAYBE it will help? Ive tried lyrica, neurontin and a host of others- nothing has helped. What makes this one any different? Besides that, im not depressed- I dont need the drug for that reason. (And when I am, I have no problems popping a Xanax and going to bed!) Actually Im never depressed, more like overloaded- and I believe that falls under anxiety, not depression. :D
But the more I read about this Cymbalta, and Ive been reading alot about it tonight, the more I am sure I wont be trying this....thank you so much for your input, and your reassurance.
Hugs
Nikki
I think that this nose spray might actualy be worth trying- I mean seriously some of these migranes have brought me to my knees in pain...but Cymbalta, take it for a month and MAYBE it will help? Ive tried lyrica, neurontin and a host of others- nothing has helped. What makes this one any different? Besides that, im not depressed- I dont need the drug for that reason. (And when I am, I have no problems popping a Xanax and going to bed!) Actually Im never depressed, more like overloaded- and I believe that falls under anxiety, not depression. :D
But the more I read about this Cymbalta, and Ive been reading alot about it tonight, the more I am sure I wont be trying this....thank you so much for your input, and your reassurance.
Hugs
Nikki
tuckersmom
02-28-2008, 11:12 PM
Curious how the nose spray will work for you. I had not heard there was a nose spray for that. I am all for meds that don't have to go through your whole system to work. I have only had 2 migraines in the last 5 years. I used to get them about once a month. Not sure why the change but I am thankful.
good night.
Lisa
good night.
Lisa
Rem4
02-28-2008, 11:18 PM
Hey Nikki,
Congraturlation on your MRI, good for you, you should be happy and relaxed.
Thinking of you
Natalie
Congraturlation on your MRI, good for you, you should be happy and relaxed.
Thinking of you
Natalie
MSNik
02-29-2008, 08:57 AM
Lisa the spray is called Migranal and is made by Valeant Drugs. Make sure you spell it right, because there is an herbal supplement spelled differently which is out there and not getting high marks on the board!
There of course are side effects, but I know several people who are using it and are swearing by it. Ill let you know how it goes when I try it. Its only used WHEN a migrane hits, not as a preventative. Im being told that my migranes MAY be coming form hormonal changes- mostly from coming off the b/p...very possible, and it might also explain why yours have stopped...just thinking out loud..
Rem, thanks! Happy and Relaxed are not part of my vocabulary. I realized that when I read your words! Between my family life and work status- Im never relaxed....but in reading what you wrote, I started thinking I need to be more grateful for the things which ARE going my way. THis appt seems to have gone my way for the most part. SO, thank you for reminding me of whats important.
Hugs to you both.
Nikki
There of course are side effects, but I know several people who are using it and are swearing by it. Ill let you know how it goes when I try it. Its only used WHEN a migrane hits, not as a preventative. Im being told that my migranes MAY be coming form hormonal changes- mostly from coming off the b/p...very possible, and it might also explain why yours have stopped...just thinking out loud..
Rem, thanks! Happy and Relaxed are not part of my vocabulary. I realized that when I read your words! Between my family life and work status- Im never relaxed....but in reading what you wrote, I started thinking I need to be more grateful for the things which ARE going my way. THis appt seems to have gone my way for the most part. SO, thank you for reminding me of whats important.
Hugs to you both.
Nikki
Bearygood
02-29-2008, 11:38 AM
Niki, congrats on the stable MRI! I agree that it would be nice to know if our good MRI results were a consequence of what we were doing but at the end of the day, this and no relapses are what matters. And, that we ALL feel good about what we're doing or not doing, whatever that is! :)
MSNik
02-29-2008, 04:42 PM
Amen to that, Bearygood. I know, Ill never prove to any of us, let alone to myself- if it is the Rebif working, or just my MS being stable...I am totally aware of that; but in my mind- IM not ready to find out by going off the Rebif right now.
Youll be happy to know that Im having hormone tests done next month- along with a vitamin D test- and I have an appt to see my GP in mid march to discuss my Tri issues...lol.
Just thought Id let you know, I really am trying!
Hope you are well...
hugs
N
Youll be happy to know that Im having hormone tests done next month- along with a vitamin D test- and I have an appt to see my GP in mid march to discuss my Tri issues...lol.
Just thought Id let you know, I really am trying!
Hope you are well...
hugs
N
niki12
02-29-2008, 05:25 PM
GREAT NEWS!!!! Enjoy the weekend and take care of yourself. Which you are doing a good job at. So glad to hear that...
taosdaphne
02-29-2008, 07:20 PM
Gotta disagree about Cymbalta. It helps my pain significantly, esp. in the AM. I'm also on Effexor, and maybe it's the combo of the 2. My old doc said he wasn't too sure about taking both of these together, but both my neurologist and MS specialist see no problem, so I'm sticking w. it.
Did any of you on Rebif find that your hair started to fall out? I'm on Copaxone now, but for the few months I was on Rebif and a few after my pillow in the morning looked like a shaggy dog had slept on it. I had liver issues on Rebif, so maybe that was the problem. But I still have bald patches and have taken to wearing a (good) wig. Who knows if any of it will grow back.
Did any of you on Rebif find that your hair started to fall out? I'm on Copaxone now, but for the few months I was on Rebif and a few after my pillow in the morning looked like a shaggy dog had slept on it. I had liver issues on Rebif, so maybe that was the problem. But I still have bald patches and have taken to wearing a (good) wig. Who knows if any of it will grow back.
MSNik
02-29-2008, 08:34 PM
Hi Daphne, thanks for the info on cymbalta, but having checked with the Neuro today, who prescribed the Migrane meds- he said NO WAY to both...told me, one or the other.
As for hair loss- have never experienced it, and have had liver checked as recently as last month- everything is fine..sorry you went thru that. I had it happen many years ago from another drug I was taking, non MS related. My hair also started shedding heavily on me. I started using a shampoo with monoxidol in it- and it helped...eventually, my hair returned to its normal state! Hopefully, yours will too.
Hugs
Nikki
As for hair loss- have never experienced it, and have had liver checked as recently as last month- everything is fine..sorry you went thru that. I had it happen many years ago from another drug I was taking, non MS related. My hair also started shedding heavily on me. I started using a shampoo with monoxidol in it- and it helped...eventually, my hair returned to its normal state! Hopefully, yours will too.
Hugs
Nikki
topjars
03-05-2008, 04:32 AM
No attacks on me;) for well over 2 years on Rebif. Im not game to go off it.
MSNik
03-05-2008, 07:53 PM
Topjars, excellent to hear! Its nice to read positive posts now and then with success stories. im up to 18 months on Rebif, and no relapses since month 2...which im told isnt unusual, since it takes up to 6 months to really kick in! Mostly Im really pleased about my MRIs...I have so many lesions to begin with, not having anything new is BIG news for me! Im with you...sticking myself 3 times a week is the least of my problems!
Hugs
Nikki
Hugs
Nikki
zadie
03-06-2008, 07:23 PM
nikki
I was wondering you said you have no new lesions which is fantastic however do you have new symptoms from time to time that you did not have before you started on Rebif
Michele
I was wondering you said you have no new lesions which is fantastic however do you have new symptoms from time to time that you did not have before you started on Rebif
Michele
MSNik
03-06-2008, 08:07 PM
Hi Michele. MS is full of symtoms...and yes, I do occasionally get new ones...the latest is my feet are going numb and my toes are turning white on my right foot. Having talked to my Neuro about it, he thinks it might be Reynaulds syndrome, which isnt a symtom of MS, but is commonly seen in MS patients, due to nerve damage from the disease....so, yes, I can get symtoms which SEEM like they are MS symtoms, but they arent...
There is a huge difference in relapses and symtoms and one of the things you need to understand is the difference. A symptom might last a few hours or hit on and off...whereas a relapse is a new or reoccuring issue, which lasts nonstop for more than 24 hours.
Another thing you might want to know (about me) is that I was diagnosed when I woke up one morning and my entire left hand felt like I slept on it wrong. I thought I had....2 days later, the irritiation of the pain turned to all out pain. I went to see my GP who said I had a pinched nerve...he sent me for a CT scan. The radiologist who read the CT scan wouldnt let me leave, without calling in a Neuro to consult...that Neuro told me right there, in the radiology dept of the hosptial that he thought I had MS...i had more than 50 lesions on my brain. He asked me to come see him in his office the very next morning so that he could order some additional tests. I had the MRIs the next day, the blood work, to rule out Lyme and a few other things and by the following day he was 99% sure it was MS- but still wanted a SPinal Tap. I had that the next day...the following day, he told me he was still sure it was MS, but wanted me to see a friend of his, who happened to be an MS Specialist- and one of the most reknowned in the area. He got me an appt for the following day with him. All in all, I had a firm dx within 4 business days. The reason I tell you this, is because its apparent I had MS for a very long time, theres no way that many lesions could have developed that quickly- and almost 18 months later- I still have no use of my left hand...it has burned, tingled and hurt for almost 2 years. Rebif wont cure it- lyrica, neurontin and a few other drugs havent helped...my nerve damage is permanent and I learned to live with it...
Does that answer your questions?
Nikki
There is a huge difference in relapses and symtoms and one of the things you need to understand is the difference. A symptom might last a few hours or hit on and off...whereas a relapse is a new or reoccuring issue, which lasts nonstop for more than 24 hours.
Another thing you might want to know (about me) is that I was diagnosed when I woke up one morning and my entire left hand felt like I slept on it wrong. I thought I had....2 days later, the irritiation of the pain turned to all out pain. I went to see my GP who said I had a pinched nerve...he sent me for a CT scan. The radiologist who read the CT scan wouldnt let me leave, without calling in a Neuro to consult...that Neuro told me right there, in the radiology dept of the hosptial that he thought I had MS...i had more than 50 lesions on my brain. He asked me to come see him in his office the very next morning so that he could order some additional tests. I had the MRIs the next day, the blood work, to rule out Lyme and a few other things and by the following day he was 99% sure it was MS- but still wanted a SPinal Tap. I had that the next day...the following day, he told me he was still sure it was MS, but wanted me to see a friend of his, who happened to be an MS Specialist- and one of the most reknowned in the area. He got me an appt for the following day with him. All in all, I had a firm dx within 4 business days. The reason I tell you this, is because its apparent I had MS for a very long time, theres no way that many lesions could have developed that quickly- and almost 18 months later- I still have no use of my left hand...it has burned, tingled and hurt for almost 2 years. Rebif wont cure it- lyrica, neurontin and a few other drugs havent helped...my nerve damage is permanent and I learned to live with it...
Does that answer your questions?
Nikki