[turtle_78]

you started your Meds?

The reason why I am asking is because my hubby and I have been taking and his biggest fear is what harm are the meds going to do long term. We ahve read that they can cause liver damage and that is why I will need to have my leavles checked. His big fear is that the drugs will cause something that I will not be able to recover from. The have only been on hte market for 20 years what happens in 30 years?

I want to go on them, I want to stay as healthy as possable. I just want to ease his fears. He stand behind my choice no matter what it is.
I think it is just the unknown that is bothing me. What happens in I do or don't go on them.

Thanks for letting me ramble on.

[SallyC]

That is the question in most MSer's minds....what if I do, what if I don't??

The MS Meds could possibly help to slow the progression of dissability, but at what cost, now or down the line. If I don't take them, am I just asking for dissability progression?

This is the reason I gave Avonex and then Copaxone a good college try and then dropped them, when they didn't slow my progression, like hot potatoes, with no regrets.

LDN is not a NMSS approved Med for MS, but it is my MS Med, for 6 yrs now. The only thing that has progressed in me is my age.. I don't know if it's the LDN, but it is the only MS med I have taken that actually makes me feel better. At such a low dose (4.5 mg), and the fact that it leaves the body within 24 hours, I don't worry about the long term effects.

My advise...give your Med a try and if it doesn't help you to feel better and/or stop your disability progression, drop it and try another, until you find one that works for you.

Good Wishes, Turt..

[Dejibo]

copaxone is 4 amino acids in a sugar base of mannitol. Its something your body makes already, just more of it. Same for interferons, we make that stuff natrually when we are fighting the flu, we ramp up and make interferons to interupt the cycle of the virus, and therefore, we aleady make it. This is why they are specialty drugs, or bio identicals. its drugs that are made to be as close to identical to what our bodies make naturally, as possible. BUT...like estrogen (another bio identical) it can cause issues. Estrogen/progestin combos have been shown to cause an increase in clotting, heart attacks, strokes, and cancers. The science changes from year to year. We dont have enough decades of research to know what the increase in amino acids, or interferons do to us just yet.

The best we can hope for is to help slow down this monster so that we are as healthy as possible when they unlock the trigger or cure so we can regain much lost ground. That is my goal anyway.

Dang! I forgot my shot! thanks for the reminder.

[pud's friend]

damned if you do and damned if you don't.
my OH urges me to continue with my beta shots. I think I've got the timing right and now sleep through the awful flu stuff that I get.
We both work in the health service and ask as many doctors as we know what they think. They've all been pretty positive that no long term harm will come from it and that it's worth a shot.
I've put my faith in medicine and research, the evidence of which can be taken in many ways. 30% chances are good if you believe you're in the group; crap if you think of the 70% that aren't.

My big fear is that my hatred for this disease, what it has done to me, what it is taking away from me, becomes all encompasing and swallows me whole in a pit of despair and depression. but that's just me probably...

[Friend2U]

Originally Posted by SallyC

This is the reason I gave Avonex and then Copaxone a good college try and then dropped them, when they didn't slow my progression, like hot potatoes, with no regrets.

I'm just curious... how long were you on the Avonex and Copaxone?
thanx

[ali12]

Hi Sue,

One of both mine and my parents biggest worries about me going onto the meds was the risk of long term organ damage.

My Doctor warned us that if I took some of the meds for a long period of time, I could possibly suffer from long term organ damage or become dependant on them.

None of the meds really helped me so I decided to come off them as I didn't really see the point in being on them if they weren't doing anything to ease my pain and could potentially make me worse.

Another one of our biggest concerns was the potential for the meds to mess around with my hormones because of my age. My Doctor told us that they could cause my hormones to go out of whack and lead to more problems in later life.

I certainly understand some of the fears that you have and think they are completely normal! It's soo hard sometimes knowing what will work and what wont and what choice to make.

I think it's a matter of weighing up the pro's and con's and seeing what you think is the best choice. You know your body better than anyone else and it totally has to be your decision!

I really hope that the meds help you should you choose to take them and you're in my thoughts!

[azoyizes]

Sue, going on and staying on one of the MS drugs is a very big decision.

I was on Avonex, then Copaxone for five years, and now I've been on Betaseron for almost three years. While on Beta, my neuro does bloodwork, checking my liver function. So far, my liver is doing fine.

I still worry about injecting a drug into myself, even though Betaseron has been around the longest. My DH would like to see me stop the med, because he doesn't think it's helping.

I'm starting to agree with him, because I've developed some serious symptoms (tremors) that are getting worse, and because my neuro says that I'm probably now SPMS, and I myself don't believe the DMD's help once you are progressive.

Everyone is different. You have to weigh the pros and cons, and then decide for yourself what you want to do.

Whatever you decide, I wish you the best.

[AfterMyNap]

Hiya, Turt! For me, the biggest fear was the fact that I would never be certain whether they helped or not. I had trouble with interferons and switched to Copaxone, and I hate that I'll never know whether things might have been different one way or the other!

[SandyC]

For Jim, it's been 21 years and so far no damage anywhere that we know of. He's been on A, B and C and once Novantrone. He's back on B because the A caused too many flu symptoms and C caused to many skin reactions. But we are thinking C again because B seems to cause more symptoms like muscle spasm and tightness after the shot. Who knows, but Jim would rather be on something than on nothing.

Good luck in whatever you try. I don't know if there is long term damage after 21 years but so far so good.

[Kitty]

Long term organ damage was my biggest fear. I started out with Copaxone but it caused too may site reactions. I had no where to inject myself and looked like a big pin cushion! I went on to Beta but had bad flu like sx plus it was hard on my liver.....so I decided to give LDN a try. What a relief! No shots, more energy, no side effects, I sleep better, it's so much less expensive and it's out of my system within 24 hours. I've been very pleased with LDN and my body has thanked me!

It's a big decision....and I gave the DMD's a good try I believe. You just have to figure out what's right for you, your lifestyle and your budget. Good luck!