Hugs and sorry you have to go back on the C . I am new to taking C but so far am having a hard time with it and they wanted me to do Ty but I couldn't bring myself to it. I am trying my best to deal with these side effects as C doesn't cause liver damage but Rebif was causing me liver problems. I know that I can't wait for a day where they find a cure. Hugs and at least you get lots of icecream.

There may be hope yet for "C".

I should have started a new thread with this.

Dej,

Know that we're there for you, supporting you and feeling your pain...
sorry you have so many side effects from C...
hope you get some type of relief...at least the doc seems to be very empathetic, and your DH sounds like a dear...

Take care, and let us know how you're doing...

I have been through dozens of MDs that were dismissive, and rude, and closed their ears at the first sign of me participating in my own treatment. I LOVE LOVE LOVE Dartmouth. They have included me every step or drag of the way. I have been able to view my MRIs with them, and they explain them. They pull out every test and explain them, and help me understand them. I have been in many research studies, and helped many grad students who are doing papers on MS. I feel that they really do have MY best interest at heart, not just what the big pharma companies are pushing at them. I have been supported, and informed, and you cant beat that. After coming from the land of dismissive care, I am not about to give up on this crew. Even if I have to drive 2 hours to see them each time. one way.

The husband? Well, what can I say. hes a keeper. we survived breast cancer together, and he says MS isnt gonna stop us. He always says US. not me or she...US.

I have been asked to really think about why I dont want to take these drugs, and take it past the next step, or the obvious side effects. Even those who suffer side effects do so with a better attitude because they know what the drug is doing for them, and not just to them. I had to admit that taking this daily shot, reminds me daily that I have MS. The side effects from the shot are worse than the side effects from the disease, because I am not "actively" in a disease state. I am in remisson. its one thing to be in pain everyday and want that shot. or to see a lump and want that shot, but MS is one of those invisable diseases unless it has already damaged your system, and I am not suffering, so I think to myself..."do I really have MS?" or "I dont need this stuff unless MS has become a problem" or "My MS is mild compared to so many others. since I am so mild, I can skip all the stuff that is needed for those in the big boy lane of this disease." In effect, I am kidding myself. This disease is silent, and keeps doing damage even when you are not having symptoms. its only when it breaks through that crunchy layer of mylin and smacks directly into the nerve root that we show this disease. Just because my nerve root remains intact, doesnt mean MS isnt silently munching through my mylin right now!

I need to change my attitude, and get better at accepting the fact that I HAVE MS! and yes, my disease is active even if I am not in a flair. now where is that ice cream.

After all that soul searching, and typing, you deserve them all.

Dej, how's the trip back to the C? I've been away a bit, looking for an update (sorry if there's another thread, I'm a scatterbrain!).

I have been back on the C for a week now, and am back to where I left off. night sweats, night heat, dry eyes, rashy and I feel exhausted. it is truly my belief that I need to stop this. My MD spoke to my DH and explained how important it is to encourage me to continue on this med, and if I feel I really cannot tolerate this, he will place me on A or on Ty.

I know many are scratching their heads and saying "why doesnt she just quit?" well, marriage is a dance, and its a series of compromises. My DH is terribly frightened that if I stop this med its will result in disability, and a dramatic decrease in my own health. Remember we survived breast cancer, and I took some horrible meds that made me really ill, and in the end it saved my life, so I completely understand the mind set he is coming from. I have always had more courage than he, and sometimes I am willing to take risks that affect more than just me. I am working with my nurse from the MS center to make a better decision other than "i hate this, I just wanna quit." I am truly weighing the pros and cons.

how many lesions have I gained since being dx? how many have I healed or lost? how many relapses have I had? What is the average? My biggest fear, and sticking point is that I do have an optic nerve lesion, and have struggled visually. Am I risking that lesion should I go bareback? So, I am building a case to either stay on this med, or lay it down. I am trying to make a well informed, rational, well reasoned choice, and not just one based on "i hate this."

As I come to my conclusion and come to my decision I will come back and update. If I had to say based on emotional stuff, I would just lay down the needle. My DH and my MD make a good case to stay on the stuff, side effects or not. I feel trapped. I feel cog fog has me buried. I feel like a kid having a temper tantrum.

So, yes, I have picked up the needles, and havent missed a single injection, but I have not been convinced that I need to stay on this stuff. I dont feel Avonex would be a good fit for me, and I dont feel I am ready for Ty. it would be Copaxone or nothing.

Clear as mud? welcome to my world.

I hear you.
I think you're between a rock and a hard place.
but I'm glad (for you) that you're back on it. I don't think I could drop a treatment (despite feeling the wrath of the beta b!^@h all too often). It's our only tried and tested hope.
Hope you stick with it. Power to you.

Dej, life is often like this, when even if there are choices none of them are good. The answer is not clear. And it's hard to still the circus in your head - let alone everyone else's clammoring - long enough to listen to your heart.

You want a definate answer - exactly how many lesions, in exactly how many months, etc, etc... And you know, I'd want that too. I'd want to know if ty would be safe for me. where is the gypsy fortune teller who can tell me?

What is the outcome of this decision, of that one? I have to know before I go there.

And we both know, there's no way of knowing. We have to trust that, something is going to show us the right way. and whatever happens, good or bad or indifferent, that is how it is supposed to go.

As much as I am glad that you can trust your docs, and you have a good man who stands by you, at the end of the day, only YOU can make this decision. Even if they are not on board.

Know this - there is no wrong choice.

I like that bgb: there is no wrong choice.

And sometimes, unfortunately, there's no big neon sign (or burning bush) pointing us in the direction of the right choice.

For a girl with little tolerance for ambiguity when it comes to my health, this has been a hard reality to deal with. Nevertheless, having gone through a similar (but not identical) situation to yours Dejibo, I ultimately decided to stop taking Copaxone.

That said, in order to do that I chose to except the premise (and here's the ambiguous part and something for which I have no proof 'for' or 'against') that the ultimate course of my MS was not being significantly altered by any medication.

In other words, the medication - although possibly limiting the duration and severity of my exacerbations - was not in fact, changing the 'outcome' of my disease.

That was somewhat 'easy' to do considering I was having zero exacerbations. Did it make sense to take a medication to reduce the frequencey and severity of something that wasn't happening in the first place?

Next, I had to assess how I felt about my MRI scans. I may not have been having any symptoms or exacerbations, but there sure were new and old lesions on my MRI. The next question for me was:
What's more important to you? How you feel ...or how your MRI scan looks?

The answer to that question is different for everyone and rightfully so.
I have a doctor and neurologist who are open to the philosophy of 'treat the patient, not the MRI', but who would also support a patient's request for meds even if that patient was experiencing difficult (non life threatening) side effects.

I chose to focus on how I feel, and to no longer undergo MRIs until such time as something changes. For now, I'm med free and experiencing no symptoms or exacerbations. Some say that's unwise, others totally get it, my family and caregivers support it. It could change.

There is no one solution to our approach to wellbeing. A feeling of wellbeing is multifaceted, it's never about just one thing. And each of us should feel free to change course at any point - focusing on what we need to get through our days.

Whatever you do, hopefully people will support whatever logic you employ to arrive at your decision and whatever rationale you employ to keep you on the track you've chosen. This is a complex issue with varying opinions, numerous influences, an assortment of players and stats and on and on.

Take care!!