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Wednesday, April 22, 2009

Which Multiple Sclerosis Therapy are you Using?

Please let us know which MS therapy you are using?

What you like or dislike about it?

How long you have been using it?

Had you used any other FDA approved MS medication prior?

Are you or have you used LDN?
And what you feel about this (like the above questions)

You need not give your real name but if you want others to contact you, make sure to provide your email address abd name.

All replies to be left in the form of a comment using the link found just below

The information you provide, could help somebody else.



Michael said...

For the past nine I have been using Rebif. I switched from Betaseron because I did not like how I felt on that drug. Truthfully, I don't like how I feel (the next day weakness) on Rebif either. All current therapies are really for Relapsing / Remitting MS and I have secondary progressive. RRMS is a treated as a disease of inflamation. SP is not. But you take the drug anyway because nhothing else is available.
I have not tried LDN and do not know enough about it yet to comment.

Kelley said...

I have been on Copaxone since my diagnosis in May 2008. Aside from the fact that I have to stick myself with a needle every day and my body has become a human pin cushion, I have been very pleased with the results.

At my six-month checkup, I had no new lesions and no active lesions. I have had no exacerbations since starting on Copaxone. I like that it does not have the side effects that the interferons have.

My blog

Mindy said...

I have been on Tysabri since Sept. 2008 and am doing well. My 6-month brain MRI showed a surprising improvement with respect to the amount of active lesions I had previously. The side effects for me are usually a brief day or two of fatigue and mild headaches (more than normal). I started with Solumedrol monthly for the first 3 years. I then tried Copaxone for a short period and then Rebif several months later, both of which had enormous side effects.

Anonymous said...

I use rebif and have for many years.
Other than occasional flu like symptoms, I feel fine

Anonymous said...

I have been on Rebif for a few years. MRI results have been good. i was diagnosed in 1996 after many, many years of symptoms that "came and went."
i started on Betaseron until Avonex was approved. I felt very good on Avonex BUT developed shingles in the arm i used most for the IM shots. Also, the good effects wore off after 4 days. I used Copaxone for a while but my symptoms worsened and I tried high dose Cytoxan therapy. I did not do well under the very strong treatment. I had monthly Cytoxan infusions for nearly 2 years. I switched doctors and went back to Betaseron. When Rebif was available, I switched. Over the past 3 or 4 years, I've had 3 Cytoxan "boosters" each for 3 months. This regimen seems to be working, given the progressing nature of MS. I have not had any prolems with any interferon drug.

Sue C said...

After diagnosis five years ago I was on Avonex for the first year. The flu-like symptoms and fatigue were so severe I got to where I could no longer give myself the shot...spouse had to do it. After a year on Avonex my liver enzymes went out of whack. I've been on Copaxone ever since. I'm blessed with a mild case of MS and feel fine other than suffering from fatigue when I get too hot.

Anonymous said...

I have been on Copaxone for almost two years. I was very happy with the Copaxone with no new lesions until the last MRI which showed quite a few new ones. It's disappointing because I have no side effects at except the severe lipoatrophy which I just try to ignore. We will see how the next mri comes out and make a decision on switching meds based on the results. I was on Avonex before but could never get past the flu like symptoms which slowly progressed from 1 day to 5. When my hair started falling out I gave up :). At this time I am researching new options in case the lesions are continuing to increase.

Jerry said...

I was diagnosed in 12/98 and immediately started Avonex. I dealt with flu-like side-effects for a few months until my body became used to it. After an exacerbation I was then put on Rebif. After my second blood test I was taken off Rebif because my blood test came back showing my liver enzymes were out of whack. I was then put on Copaxone and stayed one it for about a year until my family urged me to get a second opinion from an MS Specialist in Philadelphia. After seeing him I was switched to Betaserone and stayed on Betaserone for a couple years until I was switched to Tysabri. I have been on Tysabri for the last 20 months. It’s nice to go once a month then not having to worry about my therapy for another month…no side-effects either.

Christine said...

When I was first diagnosed I started to take Betaseron but was having alot of difficulty with the side effects of the flu like symptoms and injection site reactions. I still had new lesions at my MRI. After six months I switched to Copaxone and was very happy with how I felt and my MRI actually showed improvement. I had some injection site irritation but nothing like Betaseron. Last year however I was refered by my Dr. for a trial of the oral drug fingolimod. I have been taking it for about 11 months and am very happy. I have not had any major relapses and will have an MRI in June which will show how it has worked. I have to say I am very happy with just taking a pill once a day and not having to do injections. Hopefully things will show that this drug is working for me as well as the Copaxone worked.

Legs said...

I just started taking LDN as well as Avonex.

My recent MRI was very positive.

The UC-San Francisco allowed users of AVONEX into the trial.

The results have been astonishing and I actually cut my grass and did yard work in the first 2 years.

A lot of folks are skeptical about LDN, but for me, so far so good.

I plan to continue on Avonex but will continue on LDN until a better solution offers itself.

Also, I'm getting increasingly better looking!(Don't know if thats's from the LDN though).

Gerry said...

I have been on Copaxone since 1999.
Prior to that, I was on Betaseron for 6 mos and Avonex for 4 mos. I stopped the prior two because the flu-like symptoms (fever, headache, muscle aches) did not abate. Since I've been on Copaxone, I have not experienced any relapses nor have the daily injection prove troublesome.
My latest MRI revealed no new lesions but there was brain atrophy. The disease has progressed however despite exercise and PT/OT.
Perhaps this might be explained by the fact that I was diagnosed in 1990 and had no therapy until 1999?

I have no experience with LDN.

susan said...

I have been using Copaxone since 2006 and its fine, I've even adapted to the needle every day. I tried Rebif and had the worst attact of my life. I also follow the Swank diet and use a well researched collection of supplements. I've gone from having minimal use of my hands to what my neuo calls minimally affected in 3 years.

Amy said...

I was diagnoised in 2003. Went on copaxone immediately. It was ok, but at the end of the year my MRI was not good. Then I went on Betaseron. It did take about 6 months to get accustomed to it. Main problem was extreme fatigue. I went to work every day and at the end i just collapsed into bed. But after that initial time, it got much better and now i am pretty much OK with the meds. I have had about 3 true flu like reactions to it. But so far my MRI's are OK and I have not had any major problems. I still go to work (clerical) every day and have not had to add any mobility aids. MRI is coming up soon and will see what it is like... All in all I wish that I had not been scared away from Betaseron from the start. Have to remeber that each drug company spins their drug and trashes the others..

Jeannine said...

I have done Avonex for about a year and a half, Copaxone for 2 years and monthly IVIG infusions for about 3 years, I just started LDN a week ago and so far so good. I think I will stick with LDN...

Anonymous said...

I started on Copaxone and had too many relapses in a short period of time...I am now on Rebif, but I suffer with the side effects...Flu symptoms and weakness. Don't know how much longer I can take it!

Anonymous said...

I am now on Tysabri for 14 months. It has been an absolute blessing for me, I have not had a relapse since being on it and have not had any side effects. I have regained some feeling and the severity of many of my symptoms lessens for 3 weeks. My washout week isn't as bad as some people I have talked to and I am just glad that I was able to get on this medication!
Prior to Tysabri I was on Copaxone and had IPIRs frequently as well as constantly having relapses. I cannot tolerate any interferons because of other health issues and I found hope with Tysabri even though it can't restore what has been taken away I still feel better with what I have left of me!

Truus said...

I have secondary progressive MS and never used drugs, I started 2 month ago LDN 3mg and i have much more energy and a clear mind, so worth trying for all MS people.

Lisa Sculnick-Colvin said...

Hi everyone!

I've been on Copaxone since I was diagnosed 3 1/2 years ago. I haven't tried anything else. I like it because there are no "real" side effects. The first few months I became very well acquainted with ANTI-ITCH lotions at the injection site. When that didn't help, there was a drug that helped, but I don't remember what it was. Kind of like a combination of xanax and anti-itch meds. The only current effects I have from the drug are site reactions. Sometimes I bruise and get lumps, but WHO CARES! To me, those aren't "real" effects like from the other meds I take.

I really can't say if it helps or not because I can no longer have MRI's, but I've been told that it's for the future anyway. In general, I feel pretty much the same as I did before I was diagnosed.


Lisa Sculnick-Colvin

Barbara Adler said...

I have been on Avonex since--I think--1996, the August after Avonex was first offered. I have never been on anything. Sometimes I get chills in the night when I take it, and occasionally I am achy and have a slight headache the next day. Nothing enough to make me think about stopping Avonex. It seems to be working because I am holding my own and have not had a major exacerbation for several years. There have been no new lesions for a number of years.
Wishes for health and peace,

Lauren said...

I am currently on Tysabri therapy, and there is nothing I dislike about it. In fact I love only having to treat my MS once every 28 days with no side effects whatsoever.

I've been on Tysabri therapy for more than two years, having just completed my 33rd infusion.

I was previously on Avonex, and then Copaxone, both of which I kept getting worse on.

I use LDN for a few months while I was waiting for Tysabri to come back on the market. It did nothing for me but in all fairness, I hear it does work for some however it is not FDA approved for MS and there is no published data proving that it does anything to slow the disease progression down and/or prevent further relapses.


Anonymous said...

I have been on copaxone since 2005.Aside from fact I stick myself every day, it is working.

Anonymous said...

my story.
in 2001 i was diagnosed with ms. the neurologist, dr. goldberg, had told me that i had cervical disk degeneration at c1 - c4, and i had problems with the lumbar spine. he told me he did not want to make a diagnosis until i had these problems corrected because alot of the symptoms were the same and he couldn't
be sure of which were which. this was at obici hospital in suffolk, va. he sent me to see an orthapedic surgeon,
who agreed with him, and then he told me he did not take my insurance, tri-care. dr. goldberg told me i would have to go to portsmouth naval hospital. i went to nmpc, and they told me they would do nothing, i had multiple sclerosis and that was all. when i went back to dr. goldberg and told him, he was surprised, but being
a tri-care doctor he had to go with nmcp, and made a diagnosis of multiple sclerosis.
i was pretty much in denial, and when i told my husband he said he hadn't signed up for this and i was on my own. in 2002 i had an ms exacerbation, and pretty much came to accept that i had ms. by now nmcp had cancelled my referral to dr. goldberg, and i had to go to their neurology dept.. i saw a dr. wagner there. he started me on avonex but in early 2004 i quit taking it because my left leg got where i couldn't feel it or use it.
at that time i started using ldn. dr. wagner at nmcp said that it was not ms-approved, so did no mri's or anything. i did not have another exacerbation until sept. of 2007, when i had to use a wheelchair. at this time i found a way to see dr. goldberg, and he had me start on rebif, however i stopped taking it about april or may of 2008( because my husband and i had separated in 2005), and i was on my own with my son (9), and the rebif made my legs like jello. i was in virginia, and my parents came from floida in sept. of 2008 to get us. when i got here to florida, i started seeing dr. steingo, and he put me on copaxone. so far there have been no adverse effects.
linda b. - florida

Anonymous said...

I have been on Copaxone for over three years. I have NO side effects. I don't even get site reactions anymore since I now do it manually instead of Autoject. Occasional mild itching 2 days after is about it but even that has gotten better. I don't even consider it a side effect.

I am so grateful I was convinced to go on it right away instead of waiting like I wanted to do. I was given an MRI every three months to see if it really was MS. When the lesions didn't go away they concluded it was MS based on that and the multiple other test I was given.

I get an MRI every six months. I have had no progression so far. I love my Copaxone! I feel back to normal with accasional fatigue


centenniel said...

Diagnosed 11 years ago with PPMS. Since there are currently no effective therapies for this type of MS, I have decided that the cost and inconvenience of the hi-tech injectables outweigh any benefits that likely do not exist. So for now, I am managing my symptoms with standard oral medications, i.e., gabapentin, zanaflex and ditropan.