Aa
Drugs...
What is everyone on or what have you taken? What did you like and what did you hate?
me
currently on Rebif, Gabapentin, Amantadine, and Baclofen(which I am not taking)
I took Avonex to start back in the late 90's. It seemed to do fine and didnt cause any problems. I have been taking Rebif on and off for the last five years. I did pause for a bit to try Copaxone (sp) and I myself personally hated it. My body seems to prefer Interferons and flu like symptoms. I did go for a year without taking any injections because I thought I was too cool for that. So I am back on. I was up to be a lab rat for a trial to take campath but since my diagnosis is 20 years old and I narrowly missed the "have you been diagnosed within the last ten years or sooner" question they gave me the early exit. I was stoked about the whole test because y Rebif (if i would have been chosen for that group) would have been free for like four years, free neurologist visits, and free and I repeat free MRI's!!!!! Oh well always the bridesmaid...:)
me
currently on Rebif, Gabapentin, Amantadine, and Baclofen(which I am not taking)
I took Avonex to start back in the late 90's. It seemed to do fine and didnt cause any problems. I have been taking Rebif on and off for the last five years. I did pause for a bit to try Copaxone (sp) and I myself personally hated it. My body seems to prefer Interferons and flu like symptoms. I did go for a year without taking any injections because I thought I was too cool for that. So I am back on. I was up to be a lab rat for a trial to take campath but since my diagnosis is 20 years old and I narrowly missed the "have you been diagnosed within the last ten years or sooner" question they gave me the early exit. I was stoked about the whole test because y Rebif (if i would have been chosen for that group) would have been free for like four years, free neurologist visits, and free and I repeat free MRI's!!!!! Oh well always the bridesmaid...:)
Heck Deb you made me freaking hungry. I am so jealous of you..:). Thanks for the email. Mine is the best but she is leaving me. She said since she has been practicing I am her favorite patient because I am pretty odd..:). She is going to be helping on research at UT SW..thanks again D..you rock!!!!
Hi Jason! I sent you a PM about a neuro. I also shared a little about my trip to Sicily. I have some photos on my Medhelp page. See the following link:
http://www.medhelp.org/user_photos/list/429700?personal_page_id=5317
I highly recommend Sicily especially Taormina. The scenery is beautiful, the people awesome, and the food is terrific. The Godfather was shot partially in and around the area of Taormina to give you an idea of what it looks like. I know what a lot of people think . . . I may get shot or something because of the mafia. However, there's actually little crime in the area (other than pick-pocketing, which I never had trouble with and I was there a month) and could actually walk the streets at night without any problem at all (which I preferred because it was nice and cool).
Maybe someone else has a good neuro suggestion for you from the DFW area . . .
Deb
http://www.medhelp.org/user_photos/list/429700?personal_page_id=5317
I highly recommend Sicily especially Taormina. The scenery is beautiful, the people awesome, and the food is terrific. The Godfather was shot partially in and around the area of Taormina to give you an idea of what it looks like. I know what a lot of people think . . . I may get shot or something because of the mafia. However, there's actually little crime in the area (other than pick-pocketing, which I never had trouble with and I was there a month) and could actually walk the streets at night without any problem at all (which I preferred because it was nice and cool).
Maybe someone else has a good neuro suggestion for you from the DFW area . . .
Deb
I am the ON queen..hahaha...it messed up my left eye and the colors way back when I was a youngster. The weather was freaking grand. We actually were able to go and do the horses later on in the morning compared to be doing it when it's still dark..hahaha. That was a treat. do tell about Italy? Did you hit Greece? My dream has always been to have a villa in Greece- fish all day, drive to Germany (and have a place there) and sleep and start over. Okay i am dreaming. Sarahsmom, I appreciate your confidence in me since I have had this for so long but I am sure you probably know a whole heck of alot than me. As for the Campath, I hear grand things about it but too bad i wont be able to share. My neuro is now having me load up on prednisone every quarter. She says they have positive finding when taking rebif and doing that. I told her I was game. She called me up (we are like buddies- I give her stock tips and we yap politics and such--she broke my hear saying she was going to the VA...betrayed..) and said she may want to try a few things on me..not sure but I will let you all know...
Deb can you message me and let me know who your neuro is? guy or gal? personality etc? thanks a bunch....
Deb can you message me and let me know who your neuro is? guy or gal? personality etc? thanks a bunch....
Hey Jason! Yes, I was spoiled by the beautiful weather for two weeks or so. Bring on the rain! The weather is certainly hot now, though. When I was Italy a few weeks ago, I enjoy really nice weather there for the most part, too. This has been one of the best summers ever!
The Copaxone shots are going well. I did have a couple of reactions where I felt hot in my face (I actually turned very red, too) immediately after I gave myself the shot. I felt my heart begin to race. Because all the literature tells you that you could have a reaction like this, I was ready for it. I sat down and made myself breath in and out slowly and it went away pretty quickly. I would describe both reactions as very mild. I haven't had a reaction like this in months, and if I get it again, I'm sure it won't bother me. My neuro thinks I injected the medicine in my blood vein. He suggested that I place the needle in more at an angle than what I was doing. Copaxone has never caused any other side effects like flu-like symptoms.
I never had treatment for MS that involved steroids--can you believe that? The neuro wanted to put me in the hospital and to administer them when I had the optic neuritis, but the opthamologist said that my optic nerves were healing and I wouldn't benefit from it. My sister has had them several times and she tells me that I'm not missing anything--ha!
Have you had ON? If you have, do you still get periods of time when you have trouble with your vision? My eyesight is hideous today (I can barely see the screen) but I think it's because I've been too danged hot here. It's like a thousand degrees in my house at night--even with the freakin air conditioning on!
Stay cool . . .Your sister from Texas,
Deb
The Copaxone shots are going well. I did have a couple of reactions where I felt hot in my face (I actually turned very red, too) immediately after I gave myself the shot. I felt my heart begin to race. Because all the literature tells you that you could have a reaction like this, I was ready for it. I sat down and made myself breath in and out slowly and it went away pretty quickly. I would describe both reactions as very mild. I haven't had a reaction like this in months, and if I get it again, I'm sure it won't bother me. My neuro thinks I injected the medicine in my blood vein. He suggested that I place the needle in more at an angle than what I was doing. Copaxone has never caused any other side effects like flu-like symptoms.
I never had treatment for MS that involved steroids--can you believe that? The neuro wanted to put me in the hospital and to administer them when I had the optic neuritis, but the opthamologist said that my optic nerves were healing and I wouldn't benefit from it. My sister has had them several times and she tells me that I'm not missing anything--ha!
Have you had ON? If you have, do you still get periods of time when you have trouble with your vision? My eyesight is hideous today (I can barely see the screen) but I think it's because I've been too danged hot here. It's like a thousand degrees in my house at night--even with the freakin air conditioning on!
Stay cool . . .Your sister from Texas,
Deb
I'm on Rebif and have gone on and off of it for varying reasons. Once because I had an allergic reaction which wasn't the Rebif - ended up being my sleep med. I've also stopped due to low WBC counts. I'm thinking 22's might be the way for me if the levels are dropped off again.
I'm on baclofen, but not at the full dose anymore. I've been down to 10 mgs daily now for a long while.
I'm on baclofen, but not at the full dose anymore. I've been down to 10 mgs daily now for a long while.
Sounds like you have a lot of experience with this stuff. We can certainly benefit from your lessons learned especially those of us with recent diagnosis. What was the clinical trial for you were mentioning? Campath? I'll have to google it to see what's involved.
I just started on copaxone and we are hopeful that it will work. If the copax fails, then I'll move on to the interferons too. What was it about the copax that made you decide to stop?
I took baclofen and had a bad allergic reaction to it. Now taking Zanaflex and so far so good. What if anything are you taking for spasms or do you have spasticity?
I just started on copaxone and we are hopeful that it will work. If the copax fails, then I'll move on to the interferons too. What was it about the copax that made you decide to stop?
I took baclofen and had a bad allergic reaction to it. Now taking Zanaflex and so far so good. What if anything are you taking for spasms or do you have spasticity?
Howdy Deb, my fellow Texas sister. The Rebif is going okay. I just kind of do it. I exacerbated on my birthday (July 22) so that was fun. I had been feeling like crud for a few weeks and got on the roids. I seem to be doing better now. Back to the Rebif, that is my drug of choice but I think I need to move to the highest of the three tier potency. I loathe the flu like symptoms but I cherish the days I get off. How is your drug fairing for you and how did you like the weather we have had the last few eeks? Been freaking grand but we are back to 100 today. I am in corsicana by the way...thanks for the reply..jason
Hi Tammy, the Rebif is doing okay. I am a baby and taking the mid level what is it 22 micrograms or something. I had horrible headaches when I was younger but I dont get them as often now. Normally I know when I am going to exacerbate based on the feeling of my head actually feeling like it's going to pop and the feeling of a dull knife being stuck in my spine and rib cage. Never fails..:) As for the eye problems I have a cure but it's not part of the prescribed medical field...hahaha..email me...anyways have a great one...jason
lyrica -600mg hated it made me put on 2 st lost it since i stopped drug last yr.
requip- hated it gave me nightmares but was good for RLS but had psycotic episode on it.
temazpam,clonazpam,diazpam-hate them make me moody and off my head.
fenntanal patches 100 change every 3 days- good for controling pain useless on spasms.
amitripline 40 mg-useless made me gain weight too.
now just on my patches and antidepressant setraine 50 mg hoping to start baclofen soon for spasms though.
sam x
requip- hated it gave me nightmares but was good for RLS but had psycotic episode on it.
temazpam,clonazpam,diazpam-hate them make me moody and off my head.
fenntanal patches 100 change every 3 days- good for controling pain useless on spasms.
amitripline 40 mg-useless made me gain weight too.
now just on my patches and antidepressant setraine 50 mg hoping to start baclofen soon for spasms though.
sam x
Hey! Glad to hear from you!
I've not had a diagnosis as long as you have had, so I've not had the experience you've had being on other medicines.
I started Copaxone in March 2008. It took a long time, but I can actually say now that I'm reaping the benefits from it. From what I understand, DMD's aren't supposed to show improvement, but for me--I have seen improvement. I don't know if it is because of the unpredictability of the disease, or because of the Copaxone. My neuro thinks it's the Copaxone. He says my brain is no longer showing growth of new lesions or growth of the old ones and it's allowing my brain to heal. A year ago, I wasn't doing so well. I couldn't walk very far and was in extreme pain. This was a constant problem I had prior for years, but was getting worse . . . until the treatment. So for me (and for the moment anyways) I'm doing well on this medicine. I also take Provigil for the fatigue, and love this drug. I no longer, like you, take the Baclofen on consistent basis.
Things aren't so good for my sister, unfortunately. She has a more progressive form of MS. She started MS with a bang, and what almost looked like a stroke. To this day, she's unable to walk and lives in constant pain. She began with Rebif, but it didn't help. The progression of her disease was steadfast and constant. A year after being on Rebif, she was started on Tysabri. At first, it looked like she was going to be another miracle case because she began to get feeling feeling back in her drop foot. However, the disease is progressing.
How is the Rebif going for you? Is your disease progressing or stable? MS stinks--big time. I can't tell you how much I hate it--especially for my sister.
I've not had a diagnosis as long as you have had, so I've not had the experience you've had being on other medicines.
I started Copaxone in March 2008. It took a long time, but I can actually say now that I'm reaping the benefits from it. From what I understand, DMD's aren't supposed to show improvement, but for me--I have seen improvement. I don't know if it is because of the unpredictability of the disease, or because of the Copaxone. My neuro thinks it's the Copaxone. He says my brain is no longer showing growth of new lesions or growth of the old ones and it's allowing my brain to heal. A year ago, I wasn't doing so well. I couldn't walk very far and was in extreme pain. This was a constant problem I had prior for years, but was getting worse . . . until the treatment. So for me (and for the moment anyways) I'm doing well on this medicine. I also take Provigil for the fatigue, and love this drug. I no longer, like you, take the Baclofen on consistent basis.
Things aren't so good for my sister, unfortunately. She has a more progressive form of MS. She started MS with a bang, and what almost looked like a stroke. To this day, she's unable to walk and lives in constant pain. She began with Rebif, but it didn't help. The progression of her disease was steadfast and constant. A year after being on Rebif, she was started on Tysabri. At first, it looked like she was going to be another miracle case because she began to get feeling feeling back in her drop foot. However, the disease is progressing.
How is the Rebif going for you? Is your disease progressing or stable? MS stinks--big time. I can't tell you how much I hate it--especially for my sister.
I take zanaflex (doen't always help on the bad days), requip, amantadine,& for the dizzy motion sick type feelings I take dramamine which also doesn't always help. I'm not Dx'd yet (going through the process) so I haven't been put on the dmd's yet. Have you noticed a difference in your symptoms since you started the rebif? Is there anything that helps with the eye pain & headaches?
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