Anyone NOT on an MS modifying therapy?

Has anyone out there who has been diagnosed chosen to not get on an MS modifying drug? Or, has anyone been on one and chosen to stop drug therapy all together? If so, I would really like to talk to you. I am considering stopping my treatment and would like to talk to others who are not on a drug therapy.

If you are interested in sharing, please reply or you can send me a private email to the address in my profile.

Thanks!
Love and light,


~Niki

I'm actually not considering stopping treatment due to any pain or side effects. Surprisingly, those have been minimal for me on Copaxone. The problem I am facing is financial. We are sinking under the cost of this medication and I've only been on it for 6 months. My husband also has a very expensive disease (hemophilia) and we are reaching our lifetime maximum of two and a half million dollars with our insurance (after only 8 years) and they are kicking us off. The insurance through my job is twice as expensive, and they cover less.

I have applied for assistance with every organization I can find, from Shared Solutions to NORD to our local medicaid and our insurance. No one is willing to offer us any assistance with our medication because we make "too much money". The problem is that they only take into consideration our gross income. They are not taking into account that we pay income tax and have a mortgage and a car and like to eat and things like that. Now if I didn't work (and Lord knows I'd like a break!), I could get some financial help with the medication. But then we couldn't afford to pay our regular bills and we wouldn't have any insurance once my husband loses his. He is looking for a new job with better insurance, but I'm afraid that may be a slow road.

I am at a loss for what to do. The stress from this has been very difficult, I am supposed to be lowering my stress! It's very hard for me to keep working full time, but I have to in order to make enough money to keep us afloat of these medical bills. I'm stressed from working too much, I'm stressed from the bills, and I'm stressed from the fact that our insurance cost is about to double from what we already couldn't afford in the first place and it seems that there is nothing we can do about it. There is no help available.

I am starting to debate if the stress of working myself to death to pay for this medication is really worth it. I honestly haven't felt any different on the medication than before I was diagnosed 6 months ago. Now I realize that 6 months probably isn't enough time to tell, and there may be some benefits happening "behind the scenes", but there is still no guarantee that this medication is going to do anything for me.

I realize that I probably sound pretty stupid to get off my treatment, and I'm willing to acknowledge that may be true. But I am getting extremely worn down. I don't know what else to do. It seems very wrong to me that insurance companies and drug companies are forcing me to make this decision....but they are.

If anyone has any suggestions, I am open to trying anything at this point.

I was diagnosed in 2001 and at first I debated whether or not to take any of the abc drugs (and now rebif and tysabri).  In early 2003 I told my neurologist that I wasn't going to take anything (he had been asking me all along if I wanted to go on any of the drugs).  He then said that was fine because he said none of those drugs have been proven to what they are supposed to do.  And I believe him becaus I've seen alot of people taking them,switching them, being disappointed in them, getting worse even though they're taking them etc.  There are some who swear by them, but it is only my opinion that they have a mild form of ms.  Milder than mine, anyway.- Jim 

Niki,

 

Arggg….this whole insurance situation can be such a nightmare! I am so sorry to hear that you have to make this kind of decision. Just wanted to add that it appears that a generic version of Copaxone is in the works. I know this doesn’t help you right now, but just wanted to put it out there…

 

http://www.dnaindia.com/report.asp?newsid=1098019

 

Sunny

Lorna,
I would like to hear more about your experience. Feel free to email me if you like.

John,
My local MS Society Chapter does not offer financial assistance for medical bills. Although it may be worth a call to find out if they have any resources or recommendations. Thanks for the tip!

And thanks to everyone for your responses. I appreciate all of you!

Dear Uppitycats-

Believe me , I'm not recommending that anyone discontinue their drugs. Nor am I recommending anyone not to take them. Personally, it was my decision not to take any of them. My neurologist asked me if I wanted to take anything, and after two years of tossing it around, I decided not to. That's when the neurologist told me that was OK, because he stated that they haven't been proven to do the job that they're supposed to, and that is slow down the occurances of relapses in R/R MS.

I started out with R/R MS I think. My neurologist never told me what kind of MS I had at the beginning. Nobody can predict what kind of MS anyone has at the beginning when one is diagnosed. That takes time. Time is a factor when diagnosing what kind of MS you have. When I was diagnosed, I was kept in the hospital for 2 weeks because my symptoms were so bad. And I thought, at that time, that I had something worse than R/R MS. It took about 6 months, before I realized I was in remission and then after about 2 yrs. I was operating at about 75% according to my neurologist. And I was happy, thinking it wasn't so bad. But about a year after that I had a major relapse (Nov. 2004) and have been the same ever since with no remission. So now I believe I have secondary progressive MS. I have numbness all over, but primarily in my feet and legs, my hands and arms, my diaphram and even in my face. My legs and ankles are weak, especially my right. I have to use a cane and i get exhausted after walking 100 yds. or so. My bladder is shot. I can't work. It's my faith that is bringing me through this.

But my neurologist still maintains that none of the drugs have been proven. I personally believe it because I have seen so many disappointed people with MS who have followed the rules and have taken their drugs only to get progressively worse. And they are the ones that are agreeing with me. I'm no neurologist. My neurologist is and I'm sure he knows what he's talking about. But I'm not asking anyone to use me as an example and not take anything.

Sincerely- Jim

Niki, I don't have any other suggestions than what has already been offered.  I did want to show you my support and hope you find some resolution.  It's crazy tho, make too much to get assistance yet can't afford the high cost of meds out of pocket either..it's a rough situation and I'm so sorry you are dealing with that now.  My best wishes to you and your family, and please whatever you decide let us know.

 

Jim, welcome to the board!  Thanks for sharing your view on the meds available.   It's interesting you hear more negative than positive feedback on the meds, my husband does quite well on Copaxone.  He was undiagnosed for many years, he has progressive MS, and by the time of his dx he had lost all mobility in his legs.  I really feel, and so does his neuro, that he would have not been as disabled as he is now had he started them earlier and the reason being since starting Copaxone we really have not seen any visible progression.  Goodness knows, I really would not like to see how he would have progressed in the last six years off copaxone.  Please don't take this as a debate, you had stated you hear a lot of negativity towards the meds and I thought you might like to hear a positive experience.  Best wishes on whatever way you decide to deal with your MS, and I hope to hear more from you!

 

Kimber

Thanks Kimber! And thanks to everyone for their input. I honestly think the best (and only) thing I can do right now is to just calm down and don't panic. It's a frustrating situation, but being frustrated won't help. We're gonna have a yard sale to make a bit of money to pay down the bills. Which is good, I could use less clutter! After that it's just do the best we can and hope for the best. It's a good attitude to have, I just hope I can hang on to it.

As far as my treatment goes, I found out that after next month, my Copaxone will be covered in full for the rest of the year (meeting the deductible or whatever). So I might as well stay on it for the year, talk with my doctor, and go from there.

Again, thanks to everyone! This place and the people here really rock.

~Niki

Niki,

I tried to send you an email but I got a delivery failure notice. I fixed my profile so you can see my email addy now. Shoot me a line and I'll reply. Sorry about that.

Hello Everyone- Been awhile, but I am still here and kicking! YAY...

Anyways, I have taken Betaseron, Copaxone, and Rebif... All of which I have reacted to poorly... Depression and extreme fatigue with Betaseron, Copaxone was clinically NOT effective, and Rebif did a number on my liver... That being said my options became limited. My neurologists offered extremely risky meds such as Tysabri and Chemo, as well as pulse steroids (which is shown to be ineffective as a primary tx of MS). Thinking my options over, I decided NO MEDS was RIGHT FOR ME. When I FINALLY was able to clearly state this to my primary neuro she responded with the research she was familiar with stating the the popular MS therapies are not as effective as they are made out to be. On average they have a 30% efficacy rate with decreased lesions seen on MRI. In real life, 1/3 of the people with MS have a "mild" or less active form of the disease to begin with... This makes me wonder even more if these EXPENSIVE therapies are even worth our time outside of the hope they provide.

On good days and bad days, good months and bad months, random MRI's ALWAYS show one or more active lesions! With medications and in a few months I will find out the results of MRI w/o medications.

If it is your choice to NOT take meds then more power to you. Feel comfortable and confident that you are making the right decision for YOU! MS will take its course. Period. There is no cure. The meds available might help to alter the course, but not stop it in its tracks. These are just 2 cents in the matter 

What about applying for SSDI and medicare?

Littlechina,
My injection date twin.(Feb 1st) I'm sorry to hear of your stress. I hope that everything works out to the best.
Keep me informed.

Hello, I am new to this forum, but I just wanted to say if you and your Neuro believe Copaxone is the best option for you, I sincerely hope that you can find a way to get this covered.  It is so frustrating to feel like you need the medication and then not have a reasonable way to recieve it....as if having M.S. in itself doesn't cause a lot of stress.  My heart goes out to you.  That being said,  I have had M.S. for many years (rrms).  The drugs were just coming out when I was first diagnosed.  I didn't decide to take Copaxone until a few years later.  For me, I did not see any positive changes in the 2 years I was on it.  I only recieved side-effects that, to me, added more discomfort to my life.  The other CRAB drugs were not a good option for me either. I don't mean to be negative about the drugs as a treatment option.  I know that there are people out there very pleased with them as well as others who are doing very well and not on them.  I don't care how someone improves/maintains function.  If the drugs are working...go with it!  For me, I no longer feel the "pressure" to go back on Copaxone.   I decided to go full force with leading the healthiest lifestyle possible and doing a lot of research on alternative treatments to see what combination helps me.  I have been doing this for the past 6 years.  It is a process.   At this point, I couldn't be more pleased.  I feel better than I have in years!  I am getting sensation and balance back, and I am not having debilitating fatigue right now (which is a miracle for me).  No guarantees that this will continue. but I am going to keep heading down this road.