[Dejibo]

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!

[Lady]

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). Take care and enjoy your favorite flavor. Which ice cream flavor do you fancy?

[Natalie8]

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!

Natalie

[lady_express_44]

How do you not "qualify" for LDN?

Cherie

[SallyC]

You do what you have to do, Girl..

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

[lady_express_44]

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

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

Cherie

[Dejibo]

Originally Posted by lady_express_44

How do you not "qualify" for LDN?

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.

[lady_express_44]

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

Cherie

[Becca44]

Originally Posted by Dejibo

.

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.

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.

[NurseNancy]

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