Why I am deciding to wait to take the MS medications

I take Beta shots every other day.  I was dx in 04 and I have had only one exab since then and that has been with my eyes crossing.  Boy did I look funny!  I have seriously thought about not taking the shots, with my last MRI I had not no leisions, so I guess the Beta is working or the MS has come to a stand still.  I had it for 44 years before it decided to rear it ugly head without meds.  I am not sure what I should do.  I do know one thing, I was able to walk before I started shotting up with Beta, or it may be the MS progression.  But right now, I am between a rock and a hard place.  If I talk to my nuero, she is going to say continue to do the shots I am sure, so I really do not know what to do!

Thanks for sharing!!! You made alot of great points. I am soon to be starting the Avonex shots and I am really nervous about wether Im making the right decision. Your blog helped alot. Its such a big decision and one I have put alot of thought and reasearch into. I am going to go ahead with the treatment, but am going to monitor the situation very carefully to make sure I made the right choice. I figure if it doesnt work out for me I can always stop the treatments. I guess Im just hoping its worth a try. All I can do is pray about it and know that God is watching out for me through every step of this nasty disease. Thanks again!!

Thank you for sharing your experience, it is interesting that your rationale for NOT taking any of the disease modifying drugs is almost exactly the same as mine.  In fact, your post could have been written by me!  I was diagnosed in the summer of 2007 and while walking has become more difficult and I have more numbness in one arm and leg I have not had another true exacerbation and the multiple mris I have had have shown no changes in the size or number of lesions.  When weighing the pros and cons of the drugs, I was greatly concerned that the literature says the drugs MIGHT decrease the number of exacerbations by up to 30%.  My thought is since the disease is unpredictable how would anyone know how many exacerbations one might experience in a year -- if any and how one would determine if the drug was actually helping.  I told my neurologist I would take a wait and see approach as the possible side effects are very concerning to me.  Depression runs in my family and I am not willing to take that chance.   Also I was 51 when I was diagnosed.  Had I been diagnosed at 21, 31 or even 41 and raising my family, my choice might be different.  My husband and immediate family support my decision.  Friends and other well meaning individuals will question why I am not taking the drugs as it seems most of them know someone who knows someone who is on them and doing great.  When I explain the cost, the risks and the fact that it won't make my symptoms go away, their eyes glaze over and I think they are sorry they brought it up.  I would NEVER question anyone's decision to take or not take these disease modifying meds. 

I understand your decision to wait, in fact I started out taking many experimental drugs as well as trying a variety of drugs until one day I decided I would wean myself off any medication.

We all know our own bodies and what we are able and willing to endure and waiting is good for some and not for others.

My decision to stop taking these drugs was a simple one. The interferons (Betaseron etc) were basically killing me. They were destroying my white blood cells. I then tried Copaxone. Seemed okay for about a year and then the lipo-atrophy started. Normally I'm not a vain person (well, okay, I guess I am) but the deep dents it was leaving in my body did not make me happy and, to top it all off, the med wasn't doing anything good for me. I was turned on to LDN and it has changed my life. A med with no side effects that makes me so symptom-free that I forget I have MS??? You bet! 

No one can argue that your decision is not well researched and thought out and logical. There has to be a weighing of the effectiveness (or lack of) of the various drugs,  the side effects, including how they may affect ones body over the long haul, and the "chance" of missing out on any beneficial effects of the drugs not taken.  Then there is the cost,  ones personal situtation and abilities ( I have a severe fear of needles),  and that old "gut", which usually has to be answered to with any decision made.  You give some great guidance here.  I am sure many going through the same process would reach the opposite decision, but that is fine too.

Excellent article taking us through your thought process which led to your current decision.  So true that the decision is a very personal one and nobody can dictate to another what they should or should not do.  That's one thing I like about our community, the variety of opinions and acceptance of others' choices.

As a complementary post, I share a bit about my choice to take Copaxone as a disease-modifying treatment.  The possible side-effect of depression which exists with the beta interferons (Avonex, Rebif, Betaseron) was a large portion of my decision-making process.  Unlike the interferons, Copaxone doesn't carry that particular undesirable side-effect profile.

I'm looking forward to seeing what other members of the community have to say about their choices.

The, "to treat with one of the big four" decision has been an ongoing inner debate for me, since my diagnosis in Jan 07.  But ultimately,  I have opted to do what I can, first with Copaxone, and now Rebif. 

When I was first diagnosed, I was anxious to get started on a treatment.  I likened it to standing in the middle of a busy intersection, wearing a sign that says, 'Hit me".  Now, while I endure mostly mild flu-like symptoms, I sometimes question whether or not the injections are doing me any good. 

Are they worth the money spent? Are they worth the red splothces on my skin? Are they worth the achey muscles?

And when I feel this way, I imagine myself ten years down the road...I will be happy that ten years ago, I did what I could, using what was known to possibly make  a difference for me.

I hope.

I did try Avonex a few months after finding out but after taking it for four months I stopped because it made me sick every time I took it.  Then I decided to wait a bit as I was just adjusting to the diagnoses and trying to get a grip of everything.  In 2003 I woke up one morning and couldn't walk, my legs from the knees down were numb and tingling and my feet too.  I couldn't move my right leg, it was like dead weight and I couldn't write, I couldn't hold a pen.  Anyway I spent three very long years going to doctor after doctor trying to find out what was wrong with me, MS was suspected but I had bright spots, and old ones but they weren't convinced that it was MS.  All the doctors looked at me like I was crazy, they just didn't believe me.  So I tripped and fell through three years of horror until I finally went to a neurologist who confirmed it was MS.  I still can't walk very well, I drag my right leg and have other symptoms too, but I agree about NOT taking the disease modifying medicine.  She has tried to get me to take it but I just can't seem to bring myself to do it, like you I look at all the side effects and wonder if it's really worth it.  RIght now I say NO, I'll go to my six month appointment and see what she says, but ultimately as you say the decision is ours.  When I read your article, it was like I wrote it, you said exactly what I've been saying and thinking all along.  Thanks for writing it, it helps me feel like I'm not crazy.

also had optic neuritis  appr. 12 yrs  ago < first time.   i did not get the mri ordered  by my  eye dr.  5 yr  ago  more eye problems and dizziness and numbness randoming appearing,,,,, got mri   no  lesions,,, no meds  

now 5yr later i have  numerous symptoms but they are not random any longer and mri has lesions greater than 8 ..  started  rebif  now  but the  symptoms are hard to push back and i have had 2 rounds of high dose steroids in 4 months.     i ask myself   would i be better iif i had  begun earlier on meds or would  my symptoms be lighter , easier to manage?       i have no answer ,  but i wonder  every symptoms if i would be like i am symptom wise  or better..  my neuro { same guy  10 yr)   has no answer.  my comment  is  who knows until we have  faster  more concrete  testing and  a  cause  for ms.

I empathize with your situation.  I had optic neuritis a dozen years ago (in my mid 30s) and haven't had a relapse since.  I was diagnosed with MS about 8 years ago after I had been experiencing wierd sensations in my arm and leg.  By the time I was diagnosed it had been over 4 years since my optic neuritis and I was optimistic after reading about benign MS and seeing the Mayo clinic study.  My neurologist and I decided to "wait and see."  I was very concerned about the known and unknown side effects (the immune response system is not something to trifle with).  Unlike you, my bi-annual MRIs showed a few new lesions each time.  About 4 years ago daily significant fatigue and memory loss started, causing me to leave work.  After stopping work my next MRI showed no new lesions.  I still did not want to start any medication.  I know that if I was actively relapsing it would have been a much easier choice for me to start.  I was very concerned about the side effect of fatigue, since that was my biggest issue.  I was also concerned about depression.  A couple of years ago I started on Copaxone.  Other than injections site stuff I haven't had any side effects that I know of.  So now I'm in my late 40s, still no second relapse, but with daily fatigue leaving me unable to work full-time.  There is no evidence that I know of that starting medicine sooner would have prevented the fatigue. It is best for me to just move forward.  At the end of the day it is your body and it is the only one you get.  I don't question my decision to wait and I do question whether I will continue with Copaxone.  It is so hard when there is no way of knowing if it is helping at all.  It came down to Copaxone - a drug that has been used for over a decade and had the fewest known side effects. I wish there was more information on how people who aren't relapsing fare long-term.  I know that the clinical studies I have checked in to do not enroll anyone that is not actively relapsing, so the results may not even apply to us.  Thanks for your forum.  I wish you the best of luck.

I appreciate this piece and this discussion.  I'm trying to decide what to do.  I had an attack last fall--numb fingertips on all fingers--and after the raft of tests, was diagnosed with a CIS.  I have one lesion on my spinal cord and 2 small questionable ones in my brain.  All other tests were negative or inconclusive.  My first neuro wanted me on the drugs immediately, even before all of the test results were in.  Because I decided to switch doctors (not because of that), time passed, and in the meantime, I had a follow up brain MRI which showed no change from the fall.  I obviously want to take a possible MS diagnosis very seriously, but I also want to make sure that going on the drugs is really the right thing.  I'm not opposed to taking them, but I want to wait and see a bit longer.  The new neuro says that, given the stable MRI, this is an option for now.  I don't want to mess myself up later, clearly.  But the first attack came in the wake of a separate, unrelated injury and freak reaction I had to the injury, so I still think they have to be connected somehow.  It's really hard to know what the right thing to do is.  I have an active life that I want to stay active.  But I also don't want to go on an indefinite drug regimen if the attack was isolated.