lillyfields
02-16-2009, 09:04 PM
I just want some insight from others with ms who are not on any of the injections. I started the Avonex 3 years age and recently started Rebif and only made it to 22mcgs. It made me so sick physically and emotionally. Has anyone else tried these and decided to stop and try a different method? Like anything more naturall without all the side effects that come with the shots? I am a young mother and am scared that something might happen cause I quit the shots. It seems like all these docs. do is put people on all these meds just to get kick back from the pharm. co. These shots have a low % of reducing this stupid disease and how do we actually know if these shots r really helping the disease or is this the path our disease has taken regardless of the shots. I would like to hear from someone that has tried the shots and quit and how u r doing now. My heart and instincts tell me I made the right choice but my doc doesnt. Is it just cause the docs want to give us this exspensive stuff so they get a cut of it or so they can keep us sick so we will keep coming back to see them so they get rich or what. Please someone help with these thoughts of am I right or am I wrong!!!!
Sponsor
MSJayhawk
02-16-2009, 10:05 PM
I have never been on meds and meds are not for everyone. If something is not working for you, it is my personal belief that you should tell your doctor that it is not working and request a remedy. Is there another med available? Your doctor can tell you best. A med-free life may be your best choice if nothing works for you. Remember, there is no cure at this time.
lillyfields
02-16-2009, 10:12 PM
Is there another way? Things to do that r more natural that can help? Have you ever tried the ms injections?
lillyfields
02-16-2009, 10:13 PM
dah I overlooked you saying that u have never been on the meds. sorry
MSJayhawk
02-16-2009, 11:09 PM
No worries. I try to follow the Swank Diet, watch my triggers (and avoid them), take rest when I need it, avoid stress, do much stretching, and lately I have been passive exercising.
Snoopy61
02-16-2009, 11:16 PM
Twenty three years and I have never used any of the injectables. When I was dx'd there wasn't and of the DMDs. Through the years I have just choosen not to use any.
Some do well on the DMDs (Avonex, Betaseron, Copaxone, Rebif, Tysabri) and others do not. Some will still have progression even on the DMDs.
The National Multiple Sclerosis Society believes patients should get on a DMD asap as do some neuros. Then you have the Mayo Clinic who believes in a more conservative approach (wait and see) and some neuros also take this approach.
In the end it's your choice if you use a DMD or not.
As for myself I have no intention on using the DMDs.
I strongly believe in exercise and eating healthy.
Some do well on the DMDs (Avonex, Betaseron, Copaxone, Rebif, Tysabri) and others do not. Some will still have progression even on the DMDs.
The National Multiple Sclerosis Society believes patients should get on a DMD asap as do some neuros. Then you have the Mayo Clinic who believes in a more conservative approach (wait and see) and some neuros also take this approach.
In the end it's your choice if you use a DMD or not.
As for myself I have no intention on using the DMDs.
I strongly believe in exercise and eating healthy.
needhealing777
02-17-2009, 07:53 AM
I have never used the interferons either...I am very sensitive to medicine and the side effects just scare me..sounds like it could make one feel ALOT worse..I was diagnosed 18 years ago and have gone through 6 Neurologists and right now I finally have one who says "let's just see if you can stay off of them and keep you that way"..All the other ones pushed the drugs to the point when I would leave the office I felt like I was doing the wrong thing all the time and I would end up really bad. I feel the same you do, how can you ever know if you did the right thing anyway? How do you know if you were on the meds you wouldn't have had the same results regardless. I don't know how you can know which path the MS would have taken.
I hope to stay off of them and never have to try..
The only thing I've ever done is the prednisone during attacks, which I hate too..does anyone know what natural things keep them feeling well?
I hope to stay off of them and never have to try..
The only thing I've ever done is the prednisone during attacks, which I hate too..does anyone know what natural things keep them feeling well?
sodapopper
02-17-2009, 09:26 AM
I am not on the interferons, but I take copaxone. It is a daily injection that most people tolerate well. I have read about people on this site having reactions though. When I first starting the shots I noticed more pain at the injection site and would follow with ice for a few minutes. I've been on it for over a year now and it doesn't seem to be a problem anymore and it hasn't been since the first couple of months. The daily shot is no big deal-just part of the daily routine. Sometimes I do the shot and other time my wife does them. Sometime I think she likes poking me with needles. ha. I also exercise 30 minutes to 1 hour 6-7 days a week and watch what I eat. I feel great and actually feel better than I have in years. Maybe do to the exercise and eating. I am not willing to take a chance on going med free if this drug can reduce relapses in any way. Last week I also asked my Neuro about the new drugs that are pill form that are in the end stage of trials. He said after they have been out for 18 months- if the news still looks good we will consider switching. My Neuro has said that he has had Pt's go on and off dmd's d/t insurance reasons and that the dmd's really seem to make a difference. Who knows- I'm not willing to take that chance. He keeps saying that Copaxone is a really good drug. MS pt's didn't have these options years ago and we are very fortunate to have choices now that can make a difference.
Bearygood
02-17-2009, 10:10 AM
Hi, lillyfields. Unfortunately, there is no one definitive answer in terms of the "right thing". As Snoopy said, the DMDs do seem to work for some people and not others but even then, there is no way of definitively proving that the drugs are working and it's not the natural course of someone's own MS. Two things that always have to be in play with MS are knowing your own body and honing your instincts. You kind of have to get to a place where you make a decision and feel secure about what you're doing -- and whatever the decision, it's also important to know that you can change your mind. It's pretty much a gamble no matter what you do; it's just a matter of how you want to roll the dice.
I was dxed just about 2 years ago and like many MSers, my neuro suspects that I've had MS for a very long time. (Again, no way of proving.) My decision to not use a DMD was based on my history and weighing lifestyle choices. Perspectives from 3 of my doctors: my endocrinologist (very old school) said he thinks I made the right choice because I'm doing well and we know the DMDs have side effects; my neuro-ophthalmologist made it clear that it's a personal choice but said that if I had asked her 5 years ago she would have said to definitely use them but now she's not so sure -- and my MS specialist wants me on a DMD -- no ifs, ands or buts.
So although I'm doing well (and I do take supplements and eat pretty healthy) there is no way of knowing if at the end of the day it's anything I'm doing, not doing or if it's just the natural course of my own MS.
I wish you luck with your decision -- it's a tough one. Think about it, talk to people and take the time you need. At the end of the day I think the most important thing is to make a decision you feel good about and are willing to take responsibility for.
I was dxed just about 2 years ago and like many MSers, my neuro suspects that I've had MS for a very long time. (Again, no way of proving.) My decision to not use a DMD was based on my history and weighing lifestyle choices. Perspectives from 3 of my doctors: my endocrinologist (very old school) said he thinks I made the right choice because I'm doing well and we know the DMDs have side effects; my neuro-ophthalmologist made it clear that it's a personal choice but said that if I had asked her 5 years ago she would have said to definitely use them but now she's not so sure -- and my MS specialist wants me on a DMD -- no ifs, ands or buts.
So although I'm doing well (and I do take supplements and eat pretty healthy) there is no way of knowing if at the end of the day it's anything I'm doing, not doing or if it's just the natural course of my own MS.
I wish you luck with your decision -- it's a tough one. Think about it, talk to people and take the time you need. At the end of the day I think the most important thing is to make a decision you feel good about and are willing to take responsibility for.
PghGuy00
02-17-2009, 11:26 AM
Hey Lil'
Having been on the Avonex wagon once for 10 months, and "ALWAYS" got sick, "ALWAYS!!!!! I went off of them and into the Fingo trial. I still do not know if I am on the real thing or not. (my assumption is that I am not) I am a strict vegetarian and have been for years. I have gone totally organic also. (Living in the city affords you opportunities to shop for organic all over the place.) Have these things helped?? I don't know. but if it weren't for MS, Id be perfectly healthy otherwise.
Do take care,
Having been on the Avonex wagon once for 10 months, and "ALWAYS" got sick, "ALWAYS!!!!! I went off of them and into the Fingo trial. I still do not know if I am on the real thing or not. (my assumption is that I am not) I am a strict vegetarian and have been for years. I have gone totally organic also. (Living in the city affords you opportunities to shop for organic all over the place.) Have these things helped?? I don't know. but if it weren't for MS, Id be perfectly healthy otherwise.
Do take care,
Lisa_P
02-17-2009, 08:14 PM
Like you, I started on Avonex. I stopped after about a year and a half and went with no drugs for another year. I didn't think my symptoms were getting worse in that time, but had another big relapse so I tried Copaxone for a short time (too many reactions). Then I went another year with no meds (because of $$). Now I'm on Rebif. I like the Rebif, but I certainly understand that people react differently to different treatments.
I just read an article in a magazine how a lady resolved her symptoms by diet alone. She pretty much followed the no saturated fats and stuff like that. I think it was mainly an anti-inflammatory diet strategy...
I just read an article in a magazine how a lady resolved her symptoms by diet alone. She pretty much followed the no saturated fats and stuff like that. I think it was mainly an anti-inflammatory diet strategy...
sunshine149
02-21-2009, 12:23 PM
I am not on any of the CRAB drugs either. I was DX 12 years ago. I am also a Type I (juvenile) diabetic so I have reservations about adding these powerful medications when there isn't a lot of data yet in general about the long term side effects of these drugs, let alone if you have another auto-immune disease. So, I am trying a variety of approaches: chinese herbs, acupuncture, diet changes etc. I have tried a variety of things that haven't worked for me like yoga but I suggest that we all try things to see if we're better. This is a vastly variant disease and people's reactions to it an infinite so I don't believe that the answer is any one drug or one approach. That's my 2 cents worth!
MSNik
02-21-2009, 08:49 PM
And Ill post too, that I know of three people who all were on DMDs and stopped and all three of them within 6 months, went back on one of them. THey all relapsed.
I have been on Rebif for 3 years- I have not relapsed since I started the drug. I do know that the first 4-6 months are absolutely horrible for many people, and for me the first 4 months were just as bad. I was sick with the flu like symtoms, hanging over the toilet- wondering if it was all worth it and begging my doctor to let me quit- but I hung in there. 5 months into the shots, i never had a side effect again.
I just had my 3 year MRI, and I go twice a year and have a full MRI scan of brain and spine- still no more lesions, no new symtoms and no relapses! Im a fan of Rebif...
Did you do the right thing? Its a personal choice as everyone has stated, however Im not entirely convinced you gave the drug long enough to get any effects out of it...you have to stay on it the full 6 months to let it build up in your blood stream to find out if its for you or not.
hugs
nikki
I have been on Rebif for 3 years- I have not relapsed since I started the drug. I do know that the first 4-6 months are absolutely horrible for many people, and for me the first 4 months were just as bad. I was sick with the flu like symtoms, hanging over the toilet- wondering if it was all worth it and begging my doctor to let me quit- but I hung in there. 5 months into the shots, i never had a side effect again.
I just had my 3 year MRI, and I go twice a year and have a full MRI scan of brain and spine- still no more lesions, no new symtoms and no relapses! Im a fan of Rebif...
Did you do the right thing? Its a personal choice as everyone has stated, however Im not entirely convinced you gave the drug long enough to get any effects out of it...you have to stay on it the full 6 months to let it build up in your blood stream to find out if its for you or not.
hugs
nikki