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To Take Medications or not?
Hi Everyone,
I am a bit confused. I have what some would consider benign MS. I had an episode 10 years ago that resolved and was not diagnosed with MS at that time, since I only had the one episode. I had another one three weeks ago, nothing in between. From what I have read there are different opinions regarding taking medication in a situation like this. Is anyone else on this board in the same boat? Or any advice? Thanks in advance.
I am a bit confused. I have what some would consider benign MS. I had an episode 10 years ago that resolved and was not diagnosed with MS at that time, since I only had the one episode. I had another one three weeks ago, nothing in between. From what I have read there are different opinions regarding taking medication in a situation like this. Is anyone else on this board in the same boat? Or any advice? Thanks in advance.
Have you ever had depression on rebif or felt like you were losing your thought process? I to take 44mg. Of rebif 3x a week, and i have been feeling like I am not myself anymore! Thank you, Pam
JENNY,
WELCOME TO OUR FAMILY, BUT I'LL BE VERY BLUNT, MS IS NOT BENIGN, THE SOONER THE MEDS THE BETTER, I AM ON REBIF.I HAVE HAD NO REACTIONS ORSIDE EFFECTS.
ONLY 2 EPISODES IN 10 YEARS IS WONDERFUL.
HERE YOU'LL NEVER BE ALONE
T-LYNN
WELCOME TO OUR FAMILY, BUT I'LL BE VERY BLUNT, MS IS NOT BENIGN, THE SOONER THE MEDS THE BETTER, I AM ON REBIF.I HAVE HAD NO REACTIONS ORSIDE EFFECTS.
ONLY 2 EPISODES IN 10 YEARS IS WONDERFUL.
HERE YOU'LL NEVER BE ALONE
T-LYNN
Hi Jenny,
Adding on a belated welcome. Have you been back to a Dr. since the 2nd attack? And, did the Dr. call it benign MS? That would have been some prediction on part of the Dr.
Like Mand125, I'm on an interferon - Rebif. At decision time my head was spinning a bit. In the end I left the choice up to my Dr. because I was unable to decide even after thorough research.
What I've learned is that you cannot make a bad choice in picking a DMD. They are all known to have positive results over time.
Rebif needles are super thin and sharp, flu-like symptoms were not so bad because dosing is titrated, and blood levels are monitored. If something is disagreeable to you and your body, you can switch too.
Thanks for joining us. Hope we can help,
-shell
Adding on a belated welcome. Have you been back to a Dr. since the 2nd attack? And, did the Dr. call it benign MS? That would have been some prediction on part of the Dr.
Like Mand125, I'm on an interferon - Rebif. At decision time my head was spinning a bit. In the end I left the choice up to my Dr. because I was unable to decide even after thorough research.
What I've learned is that you cannot make a bad choice in picking a DMD. They are all known to have positive results over time.
Rebif needles are super thin and sharp, flu-like symptoms were not so bad because dosing is titrated, and blood levels are monitored. If something is disagreeable to you and your body, you can switch too.
Thanks for joining us. Hope we can help,
-shell
Hi Jenny. I chose Copaxone for most of the reasons Lulu chose it with a few others:
1. No flu-like symptoms
2. Smaller needle than Avonex. If taking Avonex, I'd have to get someone else to help me with the shot--I would not be able to place a needle in muscle without someone's help.
3. Shot subcutaneously in the fatty tissue not muscle
4. No extra lab work to check liver, kidney's, blood, etc. I work and it's really hard to take off.
5. The small print on literature of other medicines said something about it possibly causing problems for people with thyroid disease (which I have).
6. Less of a propensity for causing depression
7. My sister had a hard time with Rebif with the flu-like symptoms and depression--actually never adjusted. The flu-like symptoms did lessen, but she still had them.
8. A co-worker had a hard time with the flu-like symptoms of Avonex and never adjusted. She ended up on Copaxone and likes it much better.
I think the people I know that never adjusted to the flu-like symptoms of those medicines that I mentioned are probably in the minority; however, seeing their experience was part of my decision when I chose a DMD.
You may want to ask about the plusses of other medicines as opposed to Copaxone, I know there are advantages to those drugs.
Deb
1. No flu-like symptoms
2. Smaller needle than Avonex. If taking Avonex, I'd have to get someone else to help me with the shot--I would not be able to place a needle in muscle without someone's help.
3. Shot subcutaneously in the fatty tissue not muscle
4. No extra lab work to check liver, kidney's, blood, etc. I work and it's really hard to take off.
5. The small print on literature of other medicines said something about it possibly causing problems for people with thyroid disease (which I have).
6. Less of a propensity for causing depression
7. My sister had a hard time with Rebif with the flu-like symptoms and depression--actually never adjusted. The flu-like symptoms did lessen, but she still had them.
8. A co-worker had a hard time with the flu-like symptoms of Avonex and never adjusted. She ended up on Copaxone and likes it much better.
I think the people I know that never adjusted to the flu-like symptoms of those medicines that I mentioned are probably in the minority; however, seeing their experience was part of my decision when I chose a DMD.
You may want to ask about the plusses of other medicines as opposed to Copaxone, I know there are advantages to those drugs.
Deb
Jenny
I'm sorry that you are feeling upset and lacking support.
I think that everyone here would tell you not to worry about complaining!!
I was diagnosed 15 years ago with "mild MS" and for most of that time had very few problems. Mostly sensory symptoms with the occasional spell of dizzyness and weakness. I kind of shut my mind to the fact that I had MS.
Then just over a couple of years ago I started to get relapses. My walking has been affected. I can't stress enough that I wish I had started on a DMD before this happened. I probably wouldn't have been prescribed one (I'm in th UK) but if I had known what I know now I would have really pushed to get one.
I started on betaseron exactly a year ago. I honestly believe it has halted the progression of my MS. The problem is that some damage has already taken place. I have certainly not got any worse since starting the drug but I have not really got any better.
I try not to think what I might be like now if I had started on betaseron 2 years earlier.
Good luck with your choices.
Mand
I'm sorry that you are feeling upset and lacking support.
I think that everyone here would tell you not to worry about complaining!!
I was diagnosed 15 years ago with "mild MS" and for most of that time had very few problems. Mostly sensory symptoms with the occasional spell of dizzyness and weakness. I kind of shut my mind to the fact that I had MS.
Then just over a couple of years ago I started to get relapses. My walking has been affected. I can't stress enough that I wish I had started on a DMD before this happened. I probably wouldn't have been prescribed one (I'm in th UK) but if I had known what I know now I would have really pushed to get one.
I started on betaseron exactly a year ago. I honestly believe it has halted the progression of my MS. The problem is that some damage has already taken place. I have certainly not got any worse since starting the drug but I have not really got any better.
I try not to think what I might be like now if I had started on betaseron 2 years earlier.
Good luck with your choices.
Mand
Jenny,
I am on copaxone and I chose it for the following reasons:
1. it is done daily and I need the regular schedule to keep myself on task- I dislike figuring every three days or four days or once a week. For me, doing something daily is an easier routine to establish and stick with
2. copaxone does not cause flu-like symtoms after the injection
3. copaxone does not have the potential to cause depression
4. copaxone does not have the potential to cause liver damage so there is no need for routine follow-up blood work, like the inerferons.
Lulu
I am on copaxone and I chose it for the following reasons:
1. it is done daily and I need the regular schedule to keep myself on task- I dislike figuring every three days or four days or once a week. For me, doing something daily is an easier routine to establish and stick with
2. copaxone does not cause flu-like symtoms after the injection
3. copaxone does not have the potential to cause depression
4. copaxone does not have the potential to cause liver damage so there is no need for routine follow-up blood work, like the inerferons.
Lulu
I was wondering why one would chose copoxone over any of the other drugs? Also is hair loss very common with avonex?
I'm happy to hear that you'll be starting a medicine. MS, mild or not, can rev up and create havoc (of course it may also just pitter out, too). It is so unpredictable. However, not going on a medicine is a gamble that your disease will stay mild.
At first, you may be seing your neurologist more frequently. Also, if your taking an interferon, you will need blood work (I'm not sure of the intervals because I take Copaxone) to ensure that it's not effecting the liver, thyroid, etc. With Copaxone, your doctor will probably not need the blood work (at least in my case I've not needed it). However, going to a lab may not be a roadblock for you because you could probably go to a lab that is closer to you.
Depending on your MS progression and symptoms, your doctor may not need to see you as frequently as you're seeing him/her now. Once you're getting the hang of your injections and your MS symptoms quiet down you may not need to see the neuro but twice a year.
I'm glad you found this forum because we can be right there at your fingertips for support. Also, when you choose a drug, you'll have support from nurses from that particular drug company. From my experience, the Shared Solution nurses have been great.
Deb
At first, you may be seing your neurologist more frequently. Also, if your taking an interferon, you will need blood work (I'm not sure of the intervals because I take Copaxone) to ensure that it's not effecting the liver, thyroid, etc. With Copaxone, your doctor will probably not need the blood work (at least in my case I've not needed it). However, going to a lab may not be a roadblock for you because you could probably go to a lab that is closer to you.
Depending on your MS progression and symptoms, your doctor may not need to see you as frequently as you're seeing him/her now. Once you're getting the hang of your injections and your MS symptoms quiet down you may not need to see the neuro but twice a year.
I'm glad you found this forum because we can be right there at your fingertips for support. Also, when you choose a drug, you'll have support from nurses from that particular drug company. From my experience, the Shared Solution nurses have been great.
Deb
I am about to start on Copaxone. I wish I had done it sooner. The support system through Shared Solutions (on line) has been wonderful and you can call them and speak to a nurse about what you are going through. My sister, another MSer, talked to them a few years ago and decided not to take the meds. I've used the MS society as well and they are great. There's tons of good support here and out there. Here's the site for Shared Solutions: http://www.copaxone.com/supportservices/default.aspx Good luck, Charley.
You are fine! I contact the National MS Society. They sent me lots of info. I called and said I just was diagnosed with MS and I don't know what to do. I felt a lot less alone.
It can be as scary living in a city. You can feel just as isolated.
Alex
It can be as scary living in a city. You can feel just as isolated.
Alex
Thanks everyone,
I am sure that I will probably start some drug within the next couple of months. I am very confused and I live in a rural place in the middle of nowhere without any support, so this is even more upsetting to me. I am so scared that I will not be able to live where I am living for much longer. I feel bad complaining about my concerns since I am sure many on the board are worse off than I am and I really don't want to make anyone feel bad with my concerns. I am sorry if I hurt anyone's feelings.
I am sure that I will probably start some drug within the next couple of months. I am very confused and I live in a rural place in the middle of nowhere without any support, so this is even more upsetting to me. I am so scared that I will not be able to live where I am living for much longer. I feel bad complaining about my concerns since I am sure many on the board are worse off than I am and I really don't want to make anyone feel bad with my concerns. I am sorry if I hurt anyone's feelings.
COMMUNITY LEADER
Hi Jenny,
From what i've read, MS is doing its thing to your brain and or spine in between and the point of the drugs is to slow down or if your lucky holt its progression. Its really a 'how long is a piece of string' disease, no one really knows how long its going to take before that individual becomes life alteringly affected by it, an approximate time line is 10 to 15 years after first dx, but even that is subjective. I think it's important to have a dx and if thats you, then the DMD drugs are your next consideration, its a proactive approach and the best options at the moment.
Given the choice i know i would of taken the drugs if there was even a 1% chance that i wouldn't be facing what i now am, i'd even take them if there was buckley's chance.
Cheers.........JJ
From what i've read, MS is doing its thing to your brain and or spine in between and the point of the drugs is to slow down or if your lucky holt its progression. Its really a 'how long is a piece of string' disease, no one really knows how long its going to take before that individual becomes life alteringly affected by it, an approximate time line is 10 to 15 years after first dx, but even that is subjective. I think it's important to have a dx and if thats you, then the DMD drugs are your next consideration, its a proactive approach and the best options at the moment.
Given the choice i know i would of taken the drugs if there was even a 1% chance that i wouldn't be facing what i now am, i'd even take them if there was buckley's chance.
Cheers.........JJ
My MS Specialist was hesitant to start me on Copaxone because my symptoms are invisible. Then he said damage can be done with out you knowing it, with out symptoms so it is important to take it everyday. He does not treat symptoms but keeps me on the DMD and monitors me neurologically every six months.
Alex
Alex
Hi Jennhy,
I don't think you will find any difference of opinions around here on taking DMD's - most of us agree that if you have CIS or early MS you should begin trreatment as soon as possible . The DMD's are your best hope of holding off any progression of the disease, if that is the course your MS would take .
We have no way of knowing how our trip with MS is going to end until we are at the end of our lives.
It simply is such a big gamble to take the chance that I won't get worse and lose my legs, or my mobility, or my independence. I would really be despondent if I ended up in a bad way but had to live with knowing I had a chance to stop this and didn't take that chance.
Taking the DMD''s is really no big deal for most of us - once you get tht into your routine you just do it and accept it was part of your life.
I hope something here makes sense.
Lulu
I don't think you will find any difference of opinions around here on taking DMD's - most of us agree that if you have CIS or early MS you should begin trreatment as soon as possible . The DMD's are your best hope of holding off any progression of the disease, if that is the course your MS would take .
We have no way of knowing how our trip with MS is going to end until we are at the end of our lives.
It simply is such a big gamble to take the chance that I won't get worse and lose my legs, or my mobility, or my independence. I would really be despondent if I ended up in a bad way but had to live with knowing I had a chance to stop this and didn't take that chance.
Taking the DMD''s is really no big deal for most of us - once you get tht into your routine you just do it and accept it was part of your life.
I hope something here makes sense.
Lulu
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