no medications

[southernms]

Has anyone elected not to take any of the MS medications? If so how are you doing?

I was dx in 2009 and decided that a shot every day that gave me the flu was not a route i wanted to take. Am i the only one?

[kewpiepowers]

no meds

I was diagnosed in the mid 1990s and used copaxone for a few years, then Avonex which gave me flu-like symptoms and depression. I used it for almost a dozen years. I stopped taking that in 2011 and now have changed my diet (low fat vegan) and am trying more natural ways. I am no longer depressed. I have not exacerbated. Whether it will change the progression long term is yet to be seen as I progressed WITH the disease modifying drugs. With the dietary change I have also seen my cholesterol plummet and some weight loss which never has hurt me. I would like to see what people who have not used disease modifiers long term have experienced and if they have made other conscious decisions to do things such as diet or yoga for example to control disease progression.

[techie]

No

I decided I would not go back on any DMDs especially after the AMA study came out that said they don't really work. All the studies about how good they are, are funded by the drug companies that make the drug.
And guess what?All their studies say their drug works
I think the DMDs are high priced placebos.
My opinion.
techie

[andreagwolford]

PT

Other than medication, physical therapies are more common. Exercise can help ease the symptoms of multiple sclerosis.I know a case. There was this lady, who was experiencing MS symptoms for long. Her doctor recommended her Physical therapy which really helped her within few months.

[SNOOPY]

Twenty-seven(27) years diagnosed and have never been on a DMD.

After all these years I do pretty darn good. I am currently working out on a 4 station weight machine and I leg press 200lbs. I have increased weights on the other stations as well. I love using a weight machine

I have had 5 exacerbations. My c-spine MRI once showed numerous (too many to count) lesions, it now shows a countable 3. I have 3 brain lesions.

MS is a very individual disease and what your disease course may be is not the same disease course that someone else may experience.

I believe you need to be at peace with whichever you decide, DMDs/no DMDs. There are no guarantees with this disease with or without DMDs.

[Thistle]

I too used Copaxone for a little over a year. Really didn't have any problems with the shots themselves. However, disease did continue to progress. So, I decided not to use any DMDs - I was just never sold on the benefits.

I have changed my diet. Try to exercise more. The disease progression is about the same, but I feel more in control.

[SunshineDaydreams]

I am on copaxone now - have been since July of this year. Quite honestly, I took it religiously for the first few months (I was told it would 'work' in 3 months), then had another attack.

Since the attack in October, I 'forget' to take it a lot. I have used natural medicine all my life - herbs and nutrition. I did some research on cop axone and the other dmds and really am not sold on them at all.

I would like to stop this, but need my disability (hubby has scleroderma, so this is only income now). I feel like if I don't 'take' what the doctor prescribes, I will be somehow chastised this way.

I am interested in BG-12 - but, I am more interested in maybe upping my ALA dosage and changing a few more things in my diet (I'm vegetarian, mostly vegan - thinking of going gluten free). I also want to do a lot of research into my herbs after the holidays.

[goddessmoon]

medications

I was diagnosed in 1994, have never used any of them. I have had a few flares but overall am doing okay. I have good days/bad days but decided the side effects and unknown risks of the drugs were not worth it to me. I have other drugs for symptom relief such as Baclofen, Valium. I try to avoid stress, walk daily (if possible in the winter) and take a nap daily.

[owlnona]

I had been on Rebif from 1st. DX 12 yrs ago. than last march I had a sever injection site reaction, it took over 4 Mo. to heal. I was taken off Rebif the 1st. day I went to the Dr. & was sent to a special "Wound Care Center" at our hospital. As we had a major move,I have a new Neuro & he wanted me on "Galena"sp.? I refused as I'd been off all meds for 4mo. he agreed to another 6mo. trial drug free,I go back in Jan.to see him. I truly feel I'm going to continue drug free.
If I have an exaserbation than I'll talk about drugs.
Hope this helps. God Bless Owlnona.

[lisa1014]

Currently on copaxone

I started on avonex and it was not good. The side effects were terrible and I continued to progress.

I then switched to copaxone. I have been so much better and my last MRI was stable. I will continue on mine because I need to stay and because my insurance covers them. If I have to start paying for them it may be a different story.

[Jules A]

Has anyone elected not to take any of the MS medications? If so how are you doing?

I was dx in 2009 and decided that a shot every day that gave me the flu was not a route i wanted to take. Am i the only one?

While there are many reasons why people decide not to use a dmd you are misinformed if you believe the daily injection, Copaxone, is likely to cause flu-like symptoms. I'm sure it probably has happened in someone out there but it isn't one of the more common side effects.

The interferons that are taken once a week or every couple of days can cause flu-like symptoms but I have also heard of many people who never experienced that and also many who pre-medicate successfully.

[BigA]

If you're not going to medicate, I recommend you at least do diet and exercise. Take a look here: There are people who are not taking meds who are doing well with the program.


http://www.overcomingmultiplesclerosis.org/

[marti]

I too used Copaxone for a little over a year. Really didn't have any problems with the shots themselves. However, disease did continue to progress. So, I decided not to use any DMDs - I was just never sold on the benefits.

I have changed my diet. Try to exercise more. The disease progression is about the same, but I feel more in control.

I agree. I've been on and off Copaxone for 12 years. I am not convinced that the shots do anything at all, but my neuro keeps saying "Think of how much worse you would be now if you hadn't taken the shots at all". I'm not so sure. I know people who never took the DMD's. They seem to be doing very well. But... I have an uncle who is now dying from his MS.. in a nursing home. He would never take ANY meds at all so I'm sure this hurt his chances somewhat. But.. he worked hard into his 70's and is just now in bad shape. It's a crap shoot.

[Jules A]

But.. he worked hard into his 70's and is just now in bad shape.

Although I'm a huge fan of medication in hopes it will help us your uncle sounds like he successfully lived a full life despite MS. I pray I can work into my 60s and his story of working until 70s is incredible.