[Dejibo]

I have been taking copaxone for a long time now, and while I have had my fair share of BS with this drug, fat pad destruction wasnt one of them.

I am quite lumpy from the shots, and get massages now and again. I do alot of stuff at home, but once a month I go to a spa, and get rubbed down. The therapist pointed out that I have some dents that are growing in my thighs. Said she noticed it last time, but this time is bigger, and the areas are deeper. While still slick with oil, i reached down, and found dents! where I shoot my thighs. I have dents where I shoot my tummy. My butt of course would survive a nuclear war.

Would this force them to pull me off this drug? I have failed out on the interferons, as they make my liver VERY unhappy. I think I have wanted to come off copaxone for a long time now, but somehow, I dont want to quit. If I am going to come off, I would be a lil scared, as I have nothing left to fight with. I am NOT a candidate for LDN, and I am too afraid of Ty. So, I would have to stick with my diet, and exercise, and suppliments.

Has anyone been pulled off Copaxone for dents? They do seem to be deeper, and larger by the week.

Advice?

[Kitty]

Why aren't you a candidate for LDN (if you don't mind me asking)?

Yes, I got the dents while on Copaxone. I've been off of it for several years and still have them on my thighs. I can only imagine what I'd look like now if I were still on it! And I've got plenty of padding in any area I chose to shoot in!

Copaxone didn't work for me....and I was sort of relieved because I just couldn't imagine doing that to myself everyday for the rest of my life. I'd have looked like a human golf ball!

[Dejibo]

I take a narcotic medicine, and I am told by my MD that if I took LDN it would cause my meds to be not effective. LDN is used in high doses to detox folks who take narcotics, or even heroin, as it ties up the receptors that the drug docks into in. Like a plug into an outlet the naltraxone puts a baby safety plug into the receptor, so my meds would be rendored ineffective, and I would have to either do without them, or find alternatives. I have been on low dose morphine for about 10 years, and it has given me my life back after a spinal fracture. I do have an MD that was willing to give me LDN, but told me that I would have to come off the morphine first. So, its a no go for me. Without the morphine, I would be miserable again, and I am not willing to go back to that type of pain, and disability. I called Skips pharmacy after being told that, and they said the same thing. I could try it, but more likely than not, I would be blocking the receptors the morphine needs to do its job.

I have noticed lately I have a huge increase in sx. I have been having bigger, and fatter hot sweats at night. my skin and exzema has gone crazy. I have had a large increase in fatigue, and have been really struggling with dry eyes, dry skin, and weight gain. I havent changed my diet in years, and yet in the past 2 months, I put on 10 pounds. I have had my thyroid checked, and all levels are normal. We are putting it down to the meds. So, maybe my body is trying to tell me its time to stop this mess.

its scary to ride bareback through the MS world. not sure if I am ready for that.

[SandyC]

When Jim took Copax years ago that was a side effect that may or may not go away. He came off of it due to site reactions, not denting. I'd just call and ask the Copax people about it and see what they say.

[braingonebad]

Jeez, I can see why you don't want to do the LDN then. Sometimes all the choices just suck.

[Kitty]

That's too bad, Dej. I'd do the same thing, though, if I had pain that was under control. You don't want to try to fix what's not broken!

[FaithS]

Originally Posted by Dejibo

. . . It's scary to ride bareback through the MS world. not sure if I am ready for that.

I don't have an lot of answers for you, Dej, but I'd be scared, too. Beta was not effective for me, so the other interferons would also likely not be.

I've had a lot of BAD site reactions with Copaxone, and was relieved when my MS Specialists allowed me to decrease my frequency and number of sites used, because I was also worried about what other options might be, if Copaxone didn't work out.

I do know, though, that she mentioned some drugs that are currently being studied as options at one point. I wasn't real interested in those, because of the possibility of being on a placebo, and getting nothing at all.

However, if the ABCR's were not an option, (and, I agree, I'm also afraid of Ty), I'd probably look into a med that's being researched.

~ Faith

[Dejibo]

my husband and I talked about going into a trial with some of the oral meds, but that would mean taking a chance on a placebo, or having to travel far away to even get into a trial.

I am trying to grab new areas, and do other things to protect the fat. lets see if that works.

I go on the 13th for my MRI and specialist visit. either they kick me off, or they tell me to stay on. Either way, I will be ok. Bareback is scary though.

[dmplaura]

Dej, I hope you get into a trial and it's a benefit for you. I'm tempted to ask my neurologist about oral medication trials in our area.

[Becca44]

Originally Posted by Dejibo

Would this force them to pull me off this drug? I have failed out on the interferons, as they make my liver VERY unhappy. I think I have wanted to come off copaxone for a long time now, but somehow, I dont want to quit. If I am going to come off, I would be a lil scared, as I have nothing left to fight with. I am NOT a candidate for LDN, and I am too afraid of Ty. So, I would have to stick with my diet, and exercise, and suppliments.

Has anyone been pulled off Copaxone for dents? They do seem to be deeper, and larger by the week.

Advice?

I went off of Copaxone primarily becuase of the dents in 2007.
My thinking was this: I haven't had an exacerbation (that I know of) since initial diagnosis in 2001, I can take a break from Copaxone - see how it goes - and maybe get back on the some sort of therapy when the 'next drug' makes it way through the pipeline.

I didn't want to keep denting myself without knowing for sure it was helping me and deterring the course of this disease (because it sure was altering the shape of my body!).

I haven't had any additional exacerbations so, do not regret the choice to stop Copaxone. My doctors were in support of the decision actually, so long as I indicated to them I'd be willing to revisit the drug discussion should my health take a turn for the worse. They agreed that each of the drugs available now exact a cost on our bodies and the big picture (i.e. my sense of well being and day to day experience) was most important for me. And again, you can always go back.

Does that make sense?