My Copaxone Holiday is over
 

I was granted a two week break from Copaxone to see how many of my side effects would go away.

the night sweats left, the night heat left, my eyes have ALOT more moisture. I have less fatigue, and have been feeling better.

Spoke to the MD today who said he was NOT willing to have me take the risk of NO meds for this dread disease. He went on to explain how sinister this disease is, and how i am surely risking a relapse, and how he wants me to be as healthy as possible so when a cure comes out, or a better med to fight this with, I wont be too disabled to qualify. He would feel horribly if he didnt do everything within his power to insist that I pick and stay on a treatment. so, he gave me some choices.

1. I can chose to switch to Avonex, but because I had such a dramatic liver enzyme increase while on Betaseron, he expected that I would have the same with Avonex. Wouldnt know unless we tried kind of deal, but he would put that out there.

2. I can switch over to Tysabri. He told me I am the "perfect" candidate for this treatment, as I am low on the disabled scale, and while I have a few deficiets from past relapses, I am not severe. He said to start this drug while I am in such place in this disease makes me ideal, and exactly what TOUCH is looking for. He would provide for me to have an IV port since my access is so horrific.

3. I can just tolerate the side effects I am having with Copaxone, and hang in there for as long as I can with what I am given. He said he knows, and is understanding that ALL MS drugs are difficult to take, even those that say they have the least side effects, he wants me to know that he thinks Copaxone has been doing a good job for me. He would prefer that I restart Copaxone and hang in there till I cant take it anymore, and then we can pick one of the others.

He made it clear that he would NOT be accepting of allowing me to go bareback through the world of MS, and since I dont qualify for LDN, and find Ty to be so dramatic, that he was going to really push hard for me to pick. Let me know how the whole staff was there for me, night or day, questions, or problems...you know the drill.

After speaking to the husband, and debating, and crying, and having my temper tantrum, it has been decided that I will restart copaxone tomorrow. I was quite upset by this. The husband is completely on board with the MD and refuses to accept my desire to go bareback through the world of MS. While I am willing to accept certains risks, and be willing to pay the piper should the bill come due, he has real issues with me being willing to risk popping into SPMS or a higher level of disability when all it takes is a daily shot. He went on to try to bargain with me. he would do all my shots, I wouldnt have to worry. ice cream everyday! blah blah. like i am 3 and needed to be coached into it. Sheesh!

So, there you have it. my 2 week Drug Holday is over. it was fun while it lasted, but for now, am going to pick up the Copaxone needle and keep shooting. now, if I could just find a better attitude. I know I will have to turn my mind around, and find something positive to look upon to keep me motivated to do a good job.

Thank you for all your love and support, and private and public displays of affection. You guys mean so much to me. no one else gets its like someone who is already walking a fair mile or two in your shoes.

I am off to find ice cream. I was promised ice cream!

Hi Dejibo,
Your DH sounds like he really wants you stay healthy, even though the shots go into you not him. :) Well ice cream is always a good bribe, it works for me. My DH brings home the groceries and I always get a surprise.

I wish you well going back on "C". At least you had two full weeks of not having to shoot yourself (pun intended). :hug: Take care and enjoy your favorite flavor. Which ice cream flavor do you fancy?

Hi Dejibo,

It sounds like you have a wonderful understanding neurologist! How nice. What is not so nice is that you have put up with the Copaxone side effects again. Sorry to hear that. :( I know how you feel--I was a wimp and just couldn't take the fatigue, spaciness, headaches, anxiety, insomnia and generally malaise on the C. I went on Tysabri. But that is a bigger risk and everyone has to think long and hard about it, whatever decision you make. I do get some side effects on Ty. too.

Don't you wish you were one of those people who seems to magically have no side effects from these drugs?

Anyhow good luck with restarting C. Keep up hope -- those pills are not too far away! :hug:

Natalie

How do you not "qualify" for LDN? :confused:

Cherie

You do what you have to do, Girl..:hug::hug::hug:

CHERIE...she's an addict...LOL!!!

I've just never heard of anyone not "qualifying". :confused:

If I were Dejibo, I'd do both Copaxone and LDN ... but don't understand the obstacle to "qualifying".

Cherie

I explained this in another post. I am taking narcotics, and the LDN blocks the receptors that the narcotics I take sit in. Just like in high dose naltraxone, it is used as a rapid detox for heroin addicts, and such, the same receptors are blocked or at least tied up by the low dose. So, I CAN take the LDN, but it would mean that I would have to cycle off my narcotics, and since I have found blessed, overwhelming, life changing relief from the current stuff I am on, I am not willing to switch over to something different to get on the LDN. So, I am not qualified to take it as long as I am on the stuff I am on.

hope that clears it up.

Thanks, Dejibo ... and yes, I understand now. :)

Cherie

While I don't understand the contol your doctor and husband exhibit here, I realize it's not for me to understand - let alone agree with - and that this is about YOU. Not me. Yours is the vote that counts.

I think you should (and I hate it when people 'should' me so forgive me for the faux pas, Dejibo ;)) completely embrace the decision you've arrived at with your Doc and your husband (i.e. your partners in this journey). Obviously you greatly value their input and on some level - even though it's not a perfect choice and you've been bribed with ice-cream ;) - you agree with them ...which is easy to do when you trust they have your best interest at heart.

Feel GREAT about the approach you're taking. Believe in it. It's as good as any and quite possibly better! At least for you - and you know best. :)

sorry dej. i understand your dilemma.
it's so wonderful that your dh is so supportive. i know he'll help you thru this.

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.:hug:

There may be hope yet for "C".

I should have started a new thread with this.

Dej, :hug::hug:

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.

:icecream: :icecream: :icecream: :icecream: :icecream: :icecream:
:icecream: :icecream: :icecream: :icecream: :icecream: :icecream:
:icecream: :icecream: :icecream:

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. :hug:

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.

:hug:

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!!

Clear as mud? I think our footprints are beside one another's Dej haha!

I can understand your husband's concerns, especially based on past experiences you've had (cancer). There's no 'right' answer sometimes it feels like. :(

At the end of the day, you're so very, very lucky to have a compassionate hubby.

I wish there was a "right" answer. I wish someone could say "Hey! Copaxone treats todays sx and has a 51% chance of preventing relapses, and ya know what, if you do have a relapse it makes it 50% less severe than if you were not using this med!" isnt that great?!

The best I can get is "these are the tools we have available, and we want to keep you as healthy as possible, so when the real tx comes along, you are not so disabled you dont qualify to use it." What kinda horse puckey answer is that?! Copaxone has a 33% chance of helping to prevent the next relapse, and if you have a relapse it has about a 30% chance of helping you recover faster, and decrease the chance of permanent disability. I dont have revolving flairs. I have one every couple of years, and then its a drag foot, and a blinky eye.

If it wasnt for the optic nerve thing, I would have laid it down. That is scary to me. I dont want to risk my eyesight. I also dont want night sweats, and sleepless nights with rashy skin and eyes so dry I cant blink.

I just feel like I am darned if I do, and I am darned if I dont. Everyone keeps saying the same thing "there is no right answer." it was the same way when I had to pick a DMD. "there is no right drug."

Can you tell I am moody? I am feeling a bit cornered, and I am upset that I dont feel my opinion was wieghed before decisions were made for me. I get it, I understand it, but that doesnt mean I have to like it. With the help of my MS nurse, I am combing through stats, and my medical records to better weigh the equation to come to MY choice.

I feel trapped either way. I dont want to keep taking it, but I dont want to stop. Does that make sense? :confused:

two days on one off
 

Hi. I had trouble with side effects while I was taking C. My doctor suggested I take the medication for two days then take a day off. So two days on one day off. She also suggested that every other day is a lot better than nothing.

I found the two days on one day off routine effective and the side effects were tolerable. I took it that way for two and one half years with no major relapses.

I eventually switched to ty because I wanted more energy. I like the Ty a lot but C is worth taking and has fewer risks.

You DH sounds great! and your doctor too.

good luck

Katty

The verdict is in.

The DH and I talked, and talked, and talked. He is truly scared, and worried, and is really wanting me to stay on C until I simply cannot take it any longer. He has offered to get me MJ brownies to help me sleep, (HUGE deal for folks that retired from the prisons, trust me) and walks with me everyday, and has been my biggest advocate. It did help to talk to him. I am still angry, and feeling trapped when I went to bed.

MS nurse called this morn to tell me that I had 3 lesions on my optic nerves, and since starting copaxone I have only one. I had 23 or so lesions when I started copaxone and now I have 12. I asked if this could be a natural progression of the disease, or if she feels that its copaxone. She said while it could be a natural progression, and may have happened with or without copaxone, she feels that credit needs to be given where credit is due. The lesions did not back off the whole time I was on Betaseron, and yet they back off when I am on Copaxone, so ...after a lengthy conversation, and some tantrums on my part. I have come kicking and screaming back to the line of needing to stay on this med. Even if its making me unhappy.

For now, I keep shooting. I was assured they were watching the side effects carefully with me, and she gave me loads of pats on the back for being so tolerant of all the side effects. Most dont have this many, but the fact that its working she said makes it worth the fight.

Part of me is really upset, and part of me is relieved. This is good news, and this is bad news. I was told that I can take off ONE day per week if I really must. They dont want me to but see I am in the need of a mental health break, and are trying to work with me. They refused me on every other day shooting, and they refused anything more frequent than ONCE per week. Then I got a firm talking to about how if I feel I can possibly pick up that needle on whatever day off I chose, please do so.

I am happy the meds are working but crushed that I need to keep taking them. I feel pycho! half of me wants the MD to tell me "enough!" and half of me wants tools to keep fighting this disease with.

Thats my story. :o