Any one out there have Multiple Sclerosis?

Question

My drug of choice has been Avonex which is a Interferon, injected deep in the thigh muscle. The cost was $1,400 per month, so I stopped taking it, with no changes. I stopped taking this drug 22 months ago and have not noticed any change in my condition.

What drug are you taking and how much does it cost? Do you like it? What are the side affects?

My husband wants me to try that but I'm would only do that if I could bake it in brownies, I don't smoke.

I've heard of the LDN from a friend but my doctor won't write a script because it's not listed for MS. I guess he's afraid I'll sue him.

Thank you all so much. I've had this problem since 1979, although I wasn't diognosed until 1999.

I've taken Avonex from then until 2005 when I stopped. I have never had any problems other than a balance problem and weakness in my legs.

I can't afford the high priced medicine, I've been turned down by many organizations because we have a little money in IRA's and own a RV. The RV is all we own, we live in it. From now on it's going to be a mobile home as far as anyone is concerned.

I've got some good pointers from all of you and appreciate it. Thank you again.

Answer 1

Hi Sam. I take a drug called LDN (low dose Naltrexone) which is not approved for use with multiple sclerosis yet although it has been on the market for more than 25 years. Prior to taking it, I had absolutely no energy and symptoms that changed every few months such as intense pain, burning sensations, migraines, cramps, muscle spasms, cognitive difficulties, memory lapses, etc. I lead a normal life now that I am taking this drug. The cost is $5 a month if you are on medicare and $90 if you re not. The drug trials to get this drug approved are being privately funded since the drug companies are not interested in getting it approved as a drug to treat MS. That is because it is a generic drug now and as a consequence there is no money to be made on it. Just go to ldn.org for detailed information.

Answer 2

I need to echo what some of the other folks have said, because it is a point well worth repeating: Please don't stop your treatment. Because lack of symptoms does not mean lack of disease progression.

The important thing to remember about the CRAB drugs is that they don't stop relapses. Their purposes are:

- Slow the disease progression
- Make the relapses you do get less severe
- Make the relapses you do get not last as long
- Reduce the number of active lesions in your brain

Bottom line, think of symptom management and disease management as two separate things.

I'm on Copaxone and it works well for me. Not because I haven't had any new symptoms or relapses, but because I have no new lesions and no active lesions since I started taking it. I've successfully slowed the progression of the disease.

I will tell you that the Shared Solutions team at Teva Neuroscience is great. They keep tabs on you, make sure your shots are going OK, you are managing your side effects well (which are far less than what you'd get with Avonex, Rebif, or Betaseron), and help keep you motivated to continue your treatment. Downside to Copaxone: shots every day. Upsides: pre-mixed syringes, sub-cutaneous shots instead of intra-muscular, can be stored out of refrigeration for up to one month without losing safety or efficacy (this is new by the way), and unlike Avonex, you can use an auto-injector with all of the others, including Copaxone. I absolutely love the auto-injector. It makes it easy to give myself my own shots. I can travel with work and I have no trouble doing my own shots. The lack of side effects was important to me because of my travel. I didn't want to feel like crap while I was away from home on business.

If your insurance doesn't cover the medicine, or if you don't have insurance, please call them anyway. They can work with you to help you get the medicine you need without driving you to bankruptcy. I'm reasonably sure that all the drug manufacturers do this, not just Teva.

Good luck!

Answer 3

I have MS and am currently taking Copaxone. I found assistance with the cost of the medication through Shared Solutions.Their phone # is 1-800-887-8100. As for side effects, I have burning and stinging after the injection much like a bad bee sting. Usually only lasts for about 5 minutes. I put ice on after the injection and it seems to help. I also get a lump around the injection site, but it's gone by the next morning. I am very pleased with Copaxone.

I used to be on Avonex, but had to stop due to the effect it had on my liver. When I was on Avonex, I got financial help with the cost of the medication through Avonex. Call them and talk to them about your problem with being able to pay for the medication. They will help with the cost.

Let me caution you about not taking meds to fight your MS. I stopped taking any meds for 2 years and felt great, but I didn't realize what the MS was doing to me while I thought I was doing great. 5 months ago, I had the worst relapse I've ever had and I still haven't recovered. I have been unable to work and am now just starting to walk some. I firmly believe the severity of my relapse was because I wasn't taking anything to fight the MS. I'm sure many people will disagree with me, but I'm only sharing my experience with you.

I wish you the best and hope you get the financial help you need.

Answer 4

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Answer 5

Good day fellow MS person. Short story. Am 6 foot 1, 185 lbs, got MS. Threw everything at it. Live in Houston, Texas. Best Medical stuff in the world. Had, the tests, spinal tap(s), ouch, blood tests, CT whatever, MRI's, both types, Novantrone, 5 yrs Copaxone, now on Tysabri, more pills than I can spell. Even had open brain biopsy surgery and high deffination MRI. Throw money at it.
Having said that, I no longer teach martial arts, bummer, have learned that all medication, yes all is not restorative. Not, not, not. It has been suggested that while not restorative, it has been suggested that the medications may positively affect that part of your system which has been anecdotally related to perhaps aiding to discovering the root cause, which bye the bye is unknown. Keep on with the treatments, it is not unlike painting your toenails black, in the words of my Mom, it won't hurt you.

The Doctor's MBZ AMG payment is due, keep up the treatmnts.

Answer 6

Hi ya' Kay! I have had MS for almost 18 years. Many people who have MS live very normal lives. It is not fatal, and it does not attack major organs. It is considered an immunological disease that affects the myelin which is the protective covering on the nerves. Most of us have what is called the relapsing/remitting form of the disease. which means that the symptoms come and go. Most people who have it work, raise families and maintain a social life. Unfortunately, some cases of MS become progressive and very degenerative. This usually takes years to happen if not decades....that is if it becomes degenerative at all. There are medications on the market that slow the progression of the disease and there are many, many more that are in the testing phase now. There are also medications to handle the symptoms. At one time about 75% of people who have this disease would eventually wind up in a wheel chair but now that figure is down to 25%. With the medications coming out that figure will probably continue to drop even more. Yes, this disease can be very benign. Although I have had it for almost two decades, nobody who meets me ever guesses I have it. The National MS Society has many groups that are for the mildly affected because we look fine but due to the disease we do not have the energy or the capabilities of most people BUT we LOOK like everybody else. A Neurologist would tell you that the biggest complaint of people with MS is low energy and poor short term memory. Please don't think of the worst for your Mom or for your cousin. That is the exception not the rule.

Answer 7

I have been on Betaseron for 7 years.The cost is similar to the avonex, but if money is an issue, they do have a foundation to help with the costs of meds.The injections are subQ, tiny needle just under the skin .I have never really had any side affects, just minor flu-like symptoms with the first couple of injections, but depression is the one they seem to warn most about.I think Betaseron was the best choice for me..

The most commonly reported adverse reactions are lymphopenia, injection-site reaction, asthenia, flu-like symptom complex, headache and pain. Gradual dose titration and use of analgesics during treatment initiation may help reduce flu-like symptoms. BETASERON should be used with caution in patients with depression. Injection-site necrosis has been reported in 4% of patients in controlled trials. Patients should be advised of the importance of rotating injection sites. Female patients should be warned about the potential risk to pregnancy. Cases of anaphylaxis have been reported rarely. See "Warnings," "Precautions," and "Adverse Reactions" sections of full Prescribing Information.

Answer 8

I was diagnosed with MS but that is neither here nor there. I know it is alot to digest but it isn't something I have and it is sorry for picking a fight with a fighter. See if you Health insurance will cover Copaxone. It is a non-interferon with very minimal side effects. I hope the information is helpful and remeber the disease is a chump, we are going to win this fight. Keep your head up.

Answer 9

A MUST READ IF YOU HAVE MS, HIV/AIDS, CANCER, AUTOIMMUNE DISEASES,
AUTISM AND/OR CENTRAL NERVOUS SYSTEM DISORDERS:
When I was diagnosed with Multiple Sclerosis, I thought my life was
over. When they told me I had to take shots for the rest of my life, I
wanted my life to be over.
Then I found out about Low Dose Naltrexone! (LDN) No more shots! I
have my life back! I feel great!
If you are reading this, it's probably because you either have MS, or
one of the diseases listed above. If you love or know someone who has
MS, Please visit any of these free sites for more information.
It may be just what you need.

http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
http://www.ldnusers.org
http://www.freewebs.com/crystalangel6267/index.htm
http://ldn.proboards3.com/index.cgi

Each site is a good place to start.
All LDN sites are non-profit.

Answer 10

Cannabis sativa, prn. Market price varies.

I like it a great deal. Prednisone always made me jumpy and hyper, while this makes me smooth and mellow. I have not had an exacerbation during the past thirty years except one, a mild one, about six years ago, when the DEA broke the supply line. I went to Amsterdam, had a great time, and returned home after the drought had resolved. Note that I had total loss of vision in one eye and complete paresthesia of the entire right side of my body, and it resolved within 36 hours after visiting a coffee shop.

Side effects are patent and not a problem, dude :-)

I have exacerbating/remitting with grade I secondary progressive, with no measurable changes in the lesions during the past six years. The stuff works for me, but it does not do very well for primary progressive.