No more, I'm done.
 

So I read that article that Dr. Mercola weighed in on.
He confirmed everything I have been pondering about MS, natural approaches vs. dmd, steroids and dmd.
So after thinking about it for months now, I am really going to stop taking Rebif.

I wish I could talk to my neurologist about this, but he doesn't support the idea and he's going to get aggressive with me and make me feel ever so tiny, so I am not even going to talk to him about it,which I know isn't safe, but what other option do I have?

Rebif makes me sick.
I get a fever every time I inject.
It's DESTROYING my skin.
And I honestly feel it's hurting my overall health.

My mom FREAKED when I said I'm going to cut out the omega-6 in my diet increase the omega-3, watch my sugar intake and carb intake, and drop off Rebif.

She's a nurse so her answer for everything is 'they have a drug for that.' and I understand why she says that, because she is in that field.

She also said I need to research and get on the forums because she was certain I have been talking to the wrong people. That offended me some, do you really think that I would be living with this crap disease and not explore my options for treatment? I informed her that I have been doing research everyday since I have been diagnosed. I know what I am RISKING and at this point in time I am willing to risk it.

Like Dejibo said in a previous thread.. She'd rather be in a wheelchair and have her wits about her, than to lie in bed staring off everyday, feeling sick.

I'm sick of feeling okay, then when I inject hours later feeling sick, can't move, stiff, and so uncomfortable in my own skin that I am about to just FREAK OUT!:eek:

So, with that being said, I am going to stop taking my Rebif and try and let my body naturally heal itself.

I have been CAREFULLY tanning, 10 minutes with a high-powered fan to keep me cool and if I start to feel even the tiniest bit warm, I shut the bed off. So I am increasing my Vitamin D intake, I am going to change my diet, and HOPEFULLY be able to pick up on Yoga. I did some research on the tanning thing (vitamin D, tanning, and MS patients), they did a study on MS Patients and had them tan for 10 minutes 3x a week. It increased their vit d levels and with most of the patients, they had a 44% chance of NOT RELAPSING! Isn't Rebif like a 31% chance you won't relapse? hmmm....

I'm nervous and excited at the same time. I have good feelings about this. And after reading that article by Dr. Mercola, it makes me feel that I really do know my body, and when I have a strong feeling about something, I should probably go with it vs. what other people say for me to do.

My boyfriend is trying his hardest to be supportive of this because he knows this is what I have been wanting to try for a long time now, but he's scared, he said he's worried about the long-term of it and he's also afraid that I'm going to end up in that chair within no time. Is it fair to HIM to take this chance?

I'm glad you're going to give your body a chance to get back in balance but sorry that your family is giving you a hard time. I guess that's where I have it a little easier. I'm sort of on my own when it comes to decisions about my health care. But, knowing how misunderstood MS is it's not surprising that folks who don't have it seem to think that "one size fits all" when it comes to treatments.

Rebif and some of the other DMD's do actually work for some people but, unfortunately for me, my body didn't like any of them. And I tried. My Neuro still tries to get me to go back on Betaseron. I finally asked him once why he'd want me to take something that clearly wasn't helping me and possibly making me sicker. He hesitated and then said that the DMD's are the only thing we have and I should be grateful that I have the chance to take them. Guilting me into it isn't going to work. I had made up my mind and no amount of scare tactics from him was going to sway me.

I've been off of Beta now for three years. I've modified my diet quite a bit. Cut out the sugar and high fructose corn syrup. I do take LDN and that has helped me immensely. I think that and the supplement regimen has been the most helpful. Antioxidants and vitamins (D3 and B12 in particular) play a big role in feeling better.

I still have MS and no amount of diet or diet plus supplements is going to change that but it's at a level I can tolerate and I feel so much better overall than I did taking the DMD's and other meds prescribed for MS symptoms. Many of my symptoms have gone away or gotten much less severe. I feel better being more in charge of my health and well-being. I hope you will, too.

Ohhh Kitty! You have just made me feel even better and more comfortable with this decision!!! :hug:

I'm looking forward to it, and like you said, we'll always have MS, but at least I will be at a comfortable level or not have to worry about liver failure.

The MS will stay, but at least this way it's like charging rent.

Being on the drug was making me feel so defeated, like MS was winning the battle and the war, and that's just not fair.

Thanks again!!!!!
:hug:

You'll do fine! :) Just give it time. It takes several months for your body to adjust. There might be a period of time that you feel worse - at least I did for a few days - but I was told by a trusted friend that was my body adjusting to the healthy things I was giving it and ridding itself of the meds and things I had been putting into it. And she was right! After a few days I began to feel better and probably a month or so later I couldn't believe how much better I felt.

That's not to say I don't still have days where I don't feel good or the MS symptoms don't pop up from time to time. That still happens but it's not at the level it was before. Plus, I feel better overall so dealing with minor setbacks is easier for me.

I just had a flareup of symptoms at the beginning of April and now, just a little more than a month later, I am feeling good again. Normally, when I was on the DMD a flare would last anywhere from 12 - 16 weeks. This last one was right at about 7 weeks. This is where the LDN is so helpful, I believe. So, I still have the challenges sometimes but they're easier to deal with and get through. Plus, I feel like I'm doing something good for my body and helping to keep other illnesses from cropping up. :)

And your body is thanking you for this!

Hopefully mine will be too!

And the fact that your flares aren't lasting as long as they were while you were on the DMD has to mean that our bodies need natural medicine like a healthy diet and vitamins versus chemical drugs! =)

Ayna - I think it's great you are taking control of your health. There is nothing wrong with that. We each have to make decisions based on what we feel is best for us. We know our bodies better than anyone else and listening to our bodies is important. Additionally, I am a firm believer in the mind/body connection. If you feel confident this is the best decision for you, I do feel that you will start to feel better. (Wow! There's a lot of "feeling" in that last sentence.:D;)).

It is so hard to take a drug that makes you feel "toxic" and like crud. I have been off C for a while now. My MS is still there and I still have symptoms on a daily basis but I don't have that toxic feeling like I did. I am in hopes that I can find a dr. locally that will be on board with prescribing LDN for me.

Good luck on your new regime and let us know how you are doing.

Thank you so very much for the support tkirk! It really helps to have people backing me!

And when you say you don't feel toxic like you used to, that just made my soul so happy!
Toxic is EXACTLY the way my insides feel, and I have a feeling that we were/are experiencing the toxic feeling because it's literally a toxic substance that we fill our bodies with! SCARY! :eek:
So I am so very happy to think that my insides could very well start feeling better!

:D:grouphug:

with each passing day I got a tiny bit of my life back. my strength came back, my wit came back, my stamina came back, my skin healed. The dents from copaxone are permenant but I am no longer grey/green and ruddy at the same time. I started to feel well enough to cook, clean, sew, sit and talk with my family, travel, laugh, understand what they are talking about on TV or get the gist of a book. its been 11 months now and each and every day I get more of ME back!

I eat a clean diet. NO processed foods. Want mac and cheese? make it! want beef stew? make it! No more popping open a can for things. no MSG, no HFCS, no Aspertame, or equal and splenda stuff. want lemonade? make it! I eat a clean balanced diet, and my body thanks for me it. OMega 6 will only contribute to your inflammation, omega 3 will help bring it in line. Get your Vit D3 level up. We CANT find it in nature, you are going to need a suppliment. Cod liver oil is way to high in Vit A to take, just take the pill form. it helps! Have your MD pull a panal of vitamin levels and see if you are deficient.

God Bless you and good luck. Make sure to journal. Keep track of your progress and come back to tell us if its going well.

:hug:Dejibo
I am sooooo glad to hear how well you are doing! and also that you're continuing to do well!!!!

:Dancing-Chilli:

I am going to do all of the above! I know I had low vit d levels back in march, I'd be anxious to see if it's risen any since I have been tanning. Are you still eating read meat? Alot of what I have read says to stay away from it and that makes me nervous about sticking to a healthy diet because I am and always have been an avid red meat eater :eek:

I get most of my supplements from Puritan's Pride. They have awesome online sales. Here's the link www.puritanspride.com. I've also heard that iherb is a good site, too. The link to their site is www.iherb.com.

After much trial and error this is the menu of supplements I currently take:

Multi-Vitamin for Women 50 and older
D3 (I currently take 15,000 IU daily)
B12 (5,000mg daily. Must take on an empty stomach.)
Astaxanthin (8,000 mg daily (two 4mg capsules).
Krill Oil (1,000 mg daily)
Turmeric (1,000mg daily)

I'd love to hear what supplements others here are taking and if there are other good online sites to purchase them from.

AstaXanthan ROCKS! great choice!

I'm all for doing what you feel is right for you but imvho I would not be comfortable stopping MS medication unless I had tried all of them and nothing was tolerable, especially for someone so young.

Maybe it is because I'm a nurse also and have seen so many horrible cases of MS but I have to side with your Mom and would be terrified if my daughter stopped one without trying something else.

Once the damage is done there often very little that can be done to repair it which frightens me and motivates me to take my Copaxone. I wish you all the best and perhaps you could seek a second physician's opinion?

I am definitely considering it, having no insurance, and no medicaid makes things quite difficult. That's why I rarely see my neuro as is, it's all through the phone.

I do worry about the permanent, irreversible damage, and my age as well. What also worries me is how bad mine all started off. I deteriorated pretty quick when it hit me, and my boyfriend observed it all. I went from normal to a completely uncoordinated, discombobulated mess. Speech/slowed slurred, my breathing was messing up while I was sleeping, choking on my beverage everytime I took a drink, couldn't get my right leg to move, my vision was doubled and foggy, the report from the ER says my eyes were skipping. Sleeping all the time, not remembering anything, laughing hysterically out of nowhere for unknown reasons (that creeped me out), the vertigo was horrid, I was spinning one way and the room was spinning the opposite way. tremors in my hands and legs. spasms and this electric shock on the right side of my brain. oh and the feeling of someone taking a potato peeler to the back of my eyeball all day long.

all of that started in the middle of the night one night in January of 09. It lasted until I was diagnosed, a month later.

I'm am really afraid of experiencing that again.
and I admit, I probably should check out all of the CRAB before I say no more, but I have found that I am one of those sensitive body types. I have the normal side effects and not as normal side effects to all the drugs I have tried already (medications for symptoms) and I have a feeling I am going to have trouble with others. I wouldn't be willing to try any of them but Copaxone. But I just don't want to put drugs into my body anymore. It honestly makes my heart sad. I feel bad because my loved ones are kinda mad at me/hurt that I am doing this. My best friend backs me all the way which helps, but I don't want to hurt my family/loved ones feelings :(

Thank you Kitty for posting what vitamins you are taking!

:grouphug:

Jules makes a good point. If I had not given it a fair try...meaning that I tried both Copaxone and the Interferon DMD's....I would not have felt so comfortable doing what I did. But, I'm taking LDN which has helped me more than any of the DMD's did so I feel like I'm still fighting the monster the best way I can.

Diet and supplements will benefit anyone - not just those with MS. But for those of us with auto-immune disorders it seems to have good results probably because we're reducing inflammation and boosting our anti-oxidant consumption. Not to mention D3 which has been proven to help a whole plethora of conditions.

I lost my health insurance when I had to stop working so LDN, being so inexpensive, was a Godsend for me. Maybe that's why so many folks who have insurance don't try it. The whole "you get what you pay for" is definitely not true in my case! I was paying a ridiculous amount (well, my insurance company was) for the prescription DMD's and I was just getting worse. Once I started the LDN - which is not an insurance-covered DMD, my condition made a U-turn.

If Copaxone or one of the Interferon's works for you that's wonderful. But they don't work for everyone - just like LDN doesn't work for everyone. Everyone has a different chemical makeup in their body so nothing is going to work 100% of the time for 100% of the people.

So I am so heartbroken right now.

Everyone in my family is mad at me.

Just was lectured from my mom, explaining that I will end up in a wheelchair and die early in life by making this decision.

This is my life, my body, and im the one that has to live through all of it.

So why is it I can't get support from anyone but you guys and my best friend.

I want to cry so bad right now.
im so sick of the toxic crap im putting into my body and was so happy/excited to give this a chance.

But I guess since everyone has turned against me and is super mad at me, ill just keep sticking myself to make THEM happy :(

Don't do that Ayna, it won't help you to take a med you have no faith in. It may even backfire. After all, a major part of a drug working is placibo, as your mind controls all.:cool::)

Have you talked to your Doc about trying LDN? It may be worth a try for you. I still have MS, but for me, LDN makes it tollerable. The crabs weren't my cup of tea, either.:hug:

Thank you so much Sally!!!:hug:
I needed that ever so badly. Im sitting here at working crying like an idiot. I need support, this is my life and my body. My moms never really been a part of my life. She steps in when she thinks she can control a situation. Never calls to check in on me or my health but makes sure to call and yell at me that I haven't gone to the doc (not by choice, I don't have coverage) or to point out that I have a debilitating disease and I need to do something about it. Gosh. I wish others could just TRY to understand :(

please know that I didnt just wake up one day and decide to stop. it took 4 years! I failed off of the interferons, and it did some damage to my liver. I went to Copaxone and it took years and years for the damage and frustrations to build up to the point of me not wanting it anymore. The last year I was on it, I begged my family, my MDs, my friends, and my nurses to please just let me stop taking it. In the end I had serious pancrease issues, gastro paresis, liver function troubles, and so on. I ran out of meds to take. There were no others, and Copaxone was my drug of last resort. This is why everyone including my family pushed me so hard to stop.

Please understand how scary this is for your family. All they know is what they have been told, and what you show them. If you show them that you are working as hard as you can towards the goal of optimal health and doing everything in your power you gain their trust and respect. You dont get to quit because you had a bad day or even a bad week. You need at least a bad year to start the conversation. Im sorry if I made it seem that I simply woke up one day and laid down my needles. it wasnt nearly that easy.

Hang in there. Talk to your family. Keep the diagloge going. :hug:

It wasn't easy for me to give up Avonex and then Copaxone, either. It didn't quite take a year to quit either one, but I gave each one a fair trial - A=7mos & C=10mos.

You are still sounding like you're feeling guilty for stopping and I think that's because of the pressure to continue on, like a good soldier, by your Doc:mad: and then loved ones:(.

All I know is, I feel better now....how about you?:)

Thank you dejibo :hug:

And you never made it seem like an overnight decision by any means.

And like I said, I do feel somewhat bad because haven't tried the other drugs out, however, I do not want to put myself in the position of risk to organs, infections or another disease.

I have alot of symptoms, and don't take any drugs for them, I suck it up and deal with it because I don't want to die trying to mask a symptom.

God has a plan for me and this disease and im pretty sure he designed my body to be compatible with natural things on this planet, not man made drugs that damage my body.
Thanks again Dejibo.
think im going to get all my researched printed out and organized and make them read it so we are all on the same page. :)

Like Dej and the others, I didn't just wake up and say, "Hey, I'm not doing my shots anymore." It has more to do with insurance changes as well as getting a new neurologist that takes my insurance (Medicare advantage plan) and is closer to my home. My prescription ran out and hence, I haven't been doing my shots. Since I no longer have C in my system, I notice some differences in how I feel. Do I still have MS symptoms? Of course. Do I still have crappy days? Absolutely. But I don't have a "weird" feeling anymore that I can only contribute to the C. I ran out at the end of December - of course right in the middle of a major flare.

Anyhow, I am now considering trying LDN and even more so since Sally posted the thread about the promising study that was done on LDN and some of the results. Plus, I like the idea of not doing a shot everyday. ;)

So, my not doing any of the CRABs came about a little different than some others. We each have to make our own decision.

I will say that if every time I did a shot and felt horrible afterward like you and many others, I know I would not be compliant. I think that makes a difference as well. I know myself and know that if something makes me feel horrible, I'm less likely to try it again. I may give it a few days or a week or so depending how bad it makes me feel. So, what ever you decide, make sure you are going to be compliant with it. Discuss that with your family and let them know the compliance issues you may encounter and see what suggestions they have.

Good luck! In the end, you will make the best decision for you. :hug:

I'm sorry your family is being so difficult. Being mad at someone who is obviously having a difficult time with their treatment is not really being very supportive. It was easier for me to make the decision and then the change because I really didn't have to "please" anyone but myself. I did tell my sons what I was doing but they said they backed me up whatever course I chose.

For those who seem to know more than you do about your current treatment (Rebif) I'd ask them specific questions about the medication. Chances are they won't be able to answer you. Then, I'd tell them the answer and ask them to please be more informed about something they are pushing hard for you to continue that obviously isn't compatible with your body.

It might take a while for others to come to terms with your decision but you're the only one who has to live in your body.

I have not replied to this thread but have been reading all of the responses and considering your situation. I am not on any of the dmd right now, but I am considering gylenia. I have been on betaseron, copaxone, and tysabri. I was not able to tolerate any of them - allergic reactions, antibodies, etc.

That being said, I think you really need to personally talk with your neuro about the difficulties you are having with rebif and take someone with you (maybe your best friend) who is supportive and understands/sees the problems you are having. Have you tried any of the treatments other than rebif? If not, perhaps you should consider them before making the decision to go drug free. I do think your age is one factor that should be taken into consideration. I think that deciding to go drug free when one is in their late forties/fifties and after trying a number of other treatments may make more sense than making this decision at this stage in your life.

That being said, I agree with Kelly that ultimately this is your decision and your body.

Thank you tkirk, kitty, and barb! :grouphug:

I know my age is a huge concern especially with having so many issues to start off with..

I might consider Copaxone. I just talked with someone that has been on it for 5 years now and when I asked what side effects she experiences she laughed and said zero. Said that the medicine itself doesn't hurt and the dents don't matter to her.

Which if it came down to not being able to walk and with no dents in my body, or walking for a long long time with dents, I'd take the dents. I'm just sick of being sick. ESPECIALLY when I feel good all day, take my shot, then feel sick for the rest of it, because that just doesn't make sense.

So I might talk to my neuro about switching to Copaxone. Turns out she goes to the same neuro, when I asked her how she feels about him she was silent with a smirk on her face. So it does make me feel a lil better that its not just me that gets neglected. She doesn't care for him and his nurses as well.

I will admit, that after having a convo with her, I was sad. Just because she's had the disease 14 years longer than I have, and I have experienced all of what she has, but she hasn't experienced a fourth of what I have, she's able to work 40 hrs, and walk without assistance, and it just made me kind of sad, because it makes me wonder, if my MS is this aggressive with me at this age and I have progressed so much in the two years of being diagnosed, what is life going to be like when I'm 40.

I told her about not taking Rebif anymore and doing the healthy diet with vitamins, she said her friend has chose to take that approach and is doing well so far with it. So there is HOPE! YES!!! :cool:

My brain is feeling extremely gross today.
It's very foggy and electrical.
It literally feels like my brain is nauseous.

Is Rebif already exiting my body? or is this Rebif withdrawal?

whatever it is, I'm not liking it ...

I'm not laughing..tehe..but, i was wondering what happens when your brain throws up..:eek:

I know....MS, that's what!!!:rolleyes:

:I-Agree:



:ROTFLMAO::ROTFLMAO::ROTFLMAO:

You remember those anti-drug commercials?

ya know.. the "this is your brain on drugs" commercials?

This is my brain on MS ....:vomit2:

:D

You are a young woman. I have two sons in their 20s. I would go through hell and high water to make sure they treated with DMD's if they were DXed with MS. I have one relative who declined treatments and she is not faring well at all. This is one forum and you need to look closely at the opinions and advice you receive.

I firmly believe that Dr. Mercola is a carnival barker type of doctor playing on patient's fear of conventional medicine, this after many years of research after being diagnosed.

I take Copaxone, the least toxic of all of the DMD's, and I am very careful about my health too. I am 53 years old and still working full time and walking, etc... I attribute a lot of that to my extreme health consciousness over the past three decades but when I was DXed with MS I was very anxious to begin treatment, especially considering the health of my close relative with MS.

I'm thankful that we have treatments now. Please reconsider and at least apply for help from Shared Solutions to get Copaxone on a program for uninsured. You are worth it. :hug:

Thank you ewizabeth!

I will definitely reconsider.

I have been thinking about it (Copaxone) the past two days.

I think I am going to make an appt with my neuro and talk to HIM instead of his loopy nurses.

I was considering switching neuros but they all work together here in my town, so I feel that will screw me over to switch.

So maybe if I talk to my doc and tell him how I truly feel about Rebif, we can find some middle ground.

I don't want to continue putting toxins in my body, but I am rather young and that does concern me. I've got decades ahead of me with this disease and I do not want it going completely haywire on me this early in life, for that will make everyday living even more difficult than it already is.

I haven't taken any of this weeks Rebif and I'm going to be honest with you.. I feel pretty good. I'm in a flare right now, so I can't feel my hands, right leg, right side abdomen, and having to walk very slow and make sure I pay very close attention to each step, but my overall health is good, I don't feel the 'toxic crappy' feeling like when I take the Rebif, So I just feel that this is my body telling me thanks for not putting that toxicity in me!

You have to do what you truly believe is the right thing for you. Only you can decide that.

I would definitely speak to my Neuro and get his advice. Ultimately, you're the one who's going to be taking the meds. He can only advise you of the pros and cons.

I hope you're one of the lucky ones who can tolerate Copaxone. I couldn't. That's why I chose the route I'm taking. But I tried all the conventional treatments before I said "no more".

You're in my prayers, AynaDee. I know it's a difficult decision and not one that's made lightly or in a rush. Whatever you decide we'll be behind you. :hug:

And I appreciate that SO MUCH Kitty! :hug:

I have a feeling that I am going to have issues on Copaxone as well. I just have that stupid sensitive body type :mad:

But it wouldn't be fair if I didn't TRY the least toxic DMD before I say no more would it?

I just want to be normal again, and I guess my way of thinking is... I'm going to have this disease forever, and it's going to make me feel abnormal quite frequently, so why add drugs to make me even more abnormal? PLUS I feel that the drugs make my MS really angry, and sometimes I can't tell if the symptom I am experiencing is MS, drugs, or MS acting up BECAUSE of the drugs.:confused:

such a confusing process this all is, understanding what I am putting into my body and what it is doing to me, and what direction do I go from here.

I feel like I am on a road, and I just got to the fork, now, what path do I take?

I feel like the path to my left (which is the path to stay on a DMD) is dark. and the path to my right (which is off of DMD) is lit.

But then what if the path that's lit is misleading and once I get halfway down the lit path it turns black.

ha!
THIS IS A GAME OF TRICKERY!

I figured it out!:cool:

It's hard......and that's an understatement! Nobody knows which is the best route to take....including the doctors.....but all we can do is try them all and then stick with the one that we feel most comfortable with.

MS is such a mystery of a disease. It would be so much easier if we all had the same symptoms and there was one medicine that would help all of us. But, that's not the case.

It took me several years to finally get my own personal treatment plan honed in to what I'm doing now. Lots of trial and error. Lots of money spent which I didn't have.

I know you're anxious to get on something that helps your condition and doesn't make you feel terrible in the meantime. If you're planning to talk to your Neuro about switching to another treatment I'd suggest arming yourself with information about whatever meds you're willing to try. If your doctor is willing to prescribe LDN here is a website that gives lots of info about it. www.lowdosenaltrexone.org
Let him know you've done your research and know about the drugs.

Good luck! :hug:

Hey Ayna. I tried rebif for 2-3 months and said enough. I no longer had the side effects (take at night and sleep it off) but Copaxone which I was on 3yrs prior had ZERO side effect, it just stopped working on me. I went to Tysabri. MS is still progressing on Ty + the dozen supps i take but i'd never go back to injections. Infuse every 28 days = easy. Zero sides from Ty for me. I swam 20 laps when i got home from last infusion.

Ayna,

Try not to predict that Copaxone will not work with you please. I am highly allergic to many food and environmental and medicine products but Copaxone works for me. Do not make preconceived decisions based on the experiences of a few others. There are many, many people who have been taking Copaxone successful for ten years or more. I have taken it over three years total and I am very happy for what it has done for me.

Don't judge it by the first six months either, because if you're like me, you'll have pretty bad skin reactions until you become accustomed to the shots, locations and how to treat the day after, etc...

See your doctor and talk to the Shared Solutions nurses regarding injections once you start. Remember, "time is brain" and if you can hold off this disease, you will preserve function in brain and spine and those affect every move you make and every breath of life. Don't focus on the shot itself but the long term result. :hug:

Copaxone takes AT LEAST 6 months to start to work. it took a full year for me. PLEASE dont make assumptions about this one. most of the folks on copaxone find its just fine and dont really have issues with it. I have tons of allergies, and I am a sensitive girl. it was on the 3rd year that copaxone started really bugging me. It was the 3rd year that the dents started happening, and that I started loosing mental clarity and struggling. I had NO idea it even was the copaxone because i had been on it 3 years and no worries, but as the 3rd year rolled on, the side effects started to mount. My stomach stopped, my pancreas went crazy, my skin became reddened, and thick and dry, and my psoraisis went crazy. It was a process rather than a jump. I didnt wake up one morning and go EEEWWW Look what happened. it was hour by hour, day by day, and it took literally 3 years. The last year I simply watched the side effects list grow. Many MDs told me this couldnt be part of the C profile. It just doesnt happen. It wasnt till I spent a month in the hospital and they withdrew ALL my meds and gave them back one by one before we figured out C was an issue.

Anxiety is a huge part of having MS. I hope you will speak to your MD about getting some anxiety relief. I will simply worry myself to peices. All the what ifs that march thru my head are amazing. So, for now, lets look at your anxiety before we look at the copaxone. I hope you feel better. :hug:

Mother Nature
 

You can also get your D3 from the sun as long as you don't put on sunscreen. My levels were low so I am trying the natural approach after being on a scrip that only raised the levels a few points.

Gabriella

You know your body and you shouldn't feel bad about your family's reaction to going off Rebif. I wish for you the best on your natural supplements and eating right.

I stopped Tysabri in April of this year. My neuro also took me off Baclofen and Flexeril because he said he thought they were making me tired and sleepy during the day. I do feel more awake without them, and my leg spasms are livable. My MS did get worse after stopping the TY, but I've started on physical therapy to help my weak legs and arms. I've been taking MS (chair) Yoga for over two years now, and it has definitely made a difference.

I take:
Centrum Silver,
Vitamin A
Vitamin C
Vitamin D
Vitamin D3
Vitamin E

Plus I take Klonopin for sleep and Celexa for depression.

Wiz is right! I too am highly sensitive to medications as well as being loaded down with allergies, but I did not have trouble with Copaxone either. I tolerated it very well. While I had a side effect, I did not realize it until my prescription ran out and I was off of it. I am thinking of trying LDN but if my new neuro believes that this would not be beneficial to me, I will go back on Copaxone. Of all the DMD's it is said to be the one of most tolerable as you do not get the fluish side effects. In the 5 years I was on it, I only had 3 bad post injection reaction. However, I knew what it was and knew it would pass. All three happened when I injected in my lower thigh area where there is little fat. Hitting those fatty areas is important and that's why I loved doing my stomach and hips the best. That's where all my fat is and I had less site reactions there too.

It does take a while to take effect but it does work, at least for me it did. After 1 year of serial flares, the flares lessened and so did the severity of them. Of note, my prescription ran out in December and not sure if it has anything to do with not being on the Copaxone, but I had a flare from hell after getting strep throat in the beginning of December. It could just be a coincidence but I am still struggling through that flare with all sorts of neurological stuff going on.

So, as Wiz said, don't be quick to judge it based on others experiences. It is worth a try and you may find that it actually helps you and calms things down.

Will someone please inform me what Copaxone "does"? I didn't take the interferons (I
guess it is an Interferon?) when my only dx was MS; I did the Swank diet and it was enough to give me a pretty good but anxiety filled life. I took Interferon (that being its name) for Polycythemia Vera and had to stop due to severe side effects (rash, itching increasing, neuropathy in feet increasing, breathing at night not good). But I knew what it was supposed to do, that is, cut back on platelets in my blood, which were over a million.
So what is Copaxone's action? I know I can google it, but sometimes I find the answers on google to be to "broad" and too concerned with covering the whole waterfront of answers rather than giving a specific one. Thanks.

I was told it "fools" the anitbodies into attaching to it instead of the meyelin, which would reduce destruction of that tissue.

I have been a good girl and am taking my injections again. I was castigated by my loving DIL for not doing meds. It's not fair to my family just because I don't like injecting. It really doesn't affect me in terms of side effects; I just get tired of being reminded daily that I have something "not right" with me...

Thanks for the explanation, Debbie D!