Advice about CIS diagnosis and stopping Copaxone

[uarkgrad1996]

So, here's my back story....in October 2009 woke up with left side tingling that over the next three days progressed to entire left side from shoulder down being numb. Over the next 6 weeks I had a brain MRI, neck MRI, tons of blood work, and spinal tap. Blood work normal, brain MRI fine, neck MRI showed one "abnormality", and spinal tap "confirmed MS diagnosis".....those are the words of my neurologist at the time. On the day he gave the results of the spinal tap, he started me on Copaxone and I've been on Copaxone since December 20, 2009.

While I appreciate his aggressiveness in diagnosing me and starting me on a course of treatement, I've never liked his quickness....literally in the room with me for 2 minutes and then he passes me off to his nurse to schedule my followup appointment in 6 mths and I never get any questions answered.

Because of this, I had my primary doctor refer me to the neurology clinic that the MS Society in my area suggested/recommended. It took me 7 months to get an appointment! This morning I went to the new neurologist and took all my medical files and copies of my MRIs. The neurologist that I saw today diagnosed me with Clinically Isolated Syndrome (CIS)....said that I don't have clinically diagnosed MS because I only had one abnormality on my spinal cord, and I've only had the one flare up. Because I've not had a flare up prior to the October 2009 event and I've not had one since, I've not had "mulitiple" events that are needed to clinically diagnose MS.

Being told that I have CIS and not MS of course led to the question of do I need to continue taking Copaxone. This neurologist said....if I had come to their clinic in 2009, they would not have started me on copaxone after just one event and one abnormality and would have waited to see if I had other events before starting me on any DMT; however, since I'm on copaxone, it is up to me as to wether or not I continue to take it.

Here's the thing, I'm really lucky in that Copaxone doesn't cost me anything.....(insurance pays all but $30 and then Shared Solutions pays the remaining $30). After taking it for a year and and five month, I'm used to all the side effects with Copaxone.....itching, redness, welps. And I'm used to taking a daily shot.....it is just part of my morning routine. So, it is no big deal for me to stay on Copaxone. But, if I don't need Copaxone, do I really need to stay on it? Kind of like, if you don't have a headache or back pain, why would you take Advil daily?

Any thoughts, advice? I'm a woman of faith.....my relationship with God is first and formost...., so I'm praying about it and asking God to lead me to right decision.

Thanks!

[photomama]

Wow. I can understand your frustration with the first neuro. It certainly seems like he didn't let you make a well informed decision.

Well, I think obviously this is going to be a very personal decision and you will get a lot of varying advice in this situation.

I believe that at least one of the DMD's IS approved for CIS and that is Avonex, but I am not sure about Copaxone.

I am not on any DMD's as I am not officially diagnosed, although my neuro is sure I have MS. We just believe I'm in that 5% of people who don't show lesions on the MRI's. I've had more than one flare. So my body says MS, but technology won't prove it. If it were up to me, I would do some sort of DMD's... anything to try to prevent more damage. It's not garaunteed, but I'd like to try, you know? I am not even a big medicine pusher- but I guess I've had a long time to consider this.

So I guess that is my opinion. If your body is tolerating the meds and you have no personal objection to it... then I would stay on it. The other option is to go off of it, take good care of yourself, continue to be monitored by your neuro... and wait for the other shoe too drop. Which is kind of a big rollercoaster. But MS (and CIS, etc) is a big rollercoaster regardless. It could be years... it could be never. So there is that to consider too.

What are you comfortable with? What is your body, your mind, your heart telling you to do? If you go off the copaxone and you have a flare, will you regret going off of it? If you stay on the copaxone and never have another flare will you regret it? Which will you regret more? Not that I believe in regrets- I too have a strong faith and believe God is with us every step of the way. But asking these questions may help you hear your heart.

((hugs)) What a hard decision!! Whatever you decide will be the best for YOU. We are here for you!

[MrsBones]

Well, it depends on what your outlook is.

Copaxone was FDA approved back in 2009 for CIS. The PreCISe study showed that it can delay the second event (relapse) and therefore a dx of MS. It is possible your first neuro, while dx'ing you possibly prematurely ( though I must say I've seen people dx'd with no MRI and only a spinal tap and testing to rule out other dx's),did you a favor by rx'ing Copaxone. It may have been and may continue to be delaying that second event.

None of us, except those rare few with extraordinarily aggressive courses, really "need" to take a DMD. It's up to an individual how they want to treat or not treat their MS or CIS as the case may be. There are lots of folks who don't take a DMD, even with a dx. Others, like myself, take their chances that a DMD will slow the MS down.

Personally, if it isn't a financial or health burden, I'd keep taking it, but that's me. I've tried 3 DMDs so far and am waiting out my 4th. I'll keep going until one works or I run out of options.

What you have to ask yourself is: would I rather take injections to maybe buy myself more time before a dx and all that comes with it or would I rather take my chances, let the possible MS do its thing and not have to deal with taking Copaxone?

http://www.drugs.com/newdrugs/copaxo...osis-1278.html

http://www.medicalnewstoday.com/releases/141213.php

http://www.thelancet.com/journals/la...259-9/abstract

[Temagami]

I am in your shoes- CIS with the caveat that if the McDonald 2010 criteria were in place, then I would be dx´d with MS. In addition to the relapse piece, you are addressing the brain atrophy by taking the copaxone. So even if you don´t have physical sx, you are helping keep your cognitive function. That is the no. one reason I want to start Rx.

[Mom of three]

new poster

Hello,

I was also in a similiar situation. I was first dx with tm (transverse mylelitis) in 2007 with possible ms. My neuro advised copaxone since studies found that it is best to start at early onset. I also did not like the idea of being injected daily when there was no definate diagnosis.

Well as it turned out, I decided to stop the copaxone on my own and then 3 years later Oct. 2010, I had another attack on my spinal cord and this time it was much worse than the 1st. I'm not saying that you will have another attack or that stopping the copaxone will increase your chances.

My neuro can't say for sure if I had stayed on the copaxone, It would have prevented this recent attack since they are just meant to lessen the amount, but for me I now have my answer, it's definate rrms for now. What ever you decide, you must feel comfortable with and only time will tell. Good luck to you!

Diana

[salamandertom]

I was dx with CIS in Jan b/c I had only one "event." I just had another "event", so now it is official - but I was put on betaseron. Personally, I would NOT stop taking it. But, I am premed and I feel strongly that any DMD is better than no DMD. good luck in whatever you decide.