I am dented
 

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?

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! :eek: And I've got plenty of padding in any area I chose to shoot in! :o

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! :p :rolleyes:

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.

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.

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

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! ;)

A friend here in town, took Copaxone for 10 years and had to get off of it because of the dents getting worse. The Doc said that there was a possibility of infection if the dents would crack and that there was a possibility of that happening......sooooo, off she came..

:hug::hug:

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.

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.

copax sounds awful. i hope you work your way through this. i've no doubt that you will. :hug:

Every time I see title of this thread, I think cans.

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?

My mind swings rapidly from pillar to post on this one. Today, I want to fight tooth and nail to save the Copaxone as my DMD. Tomorrow I am fed up, had enough, and simply think its too high a price to pay for a 33% effectiveness rating on a drug and may or may not be stopping that next relapse.

My DH has been in a mood lately, and when I sat him down last night, and cornered him, he admitted he is afraid that they will pull me off the copaxone, and I will have relapse after relapse, and then life will go down hill rapidly. He feels like all those old sx will return. I had to back him up and explain that Copaxone doesnt do anything for the sx of today...you all know the story. He sounded relieved, and understood a whole lot better once I exlpained a bit more about this med to him.

I need to figure out what I am going to do to save or dismiss this med.

I totally get the quandry you're in and really appreciate the pilar to post comment. I wanted to stay on Copaxone too; in fact, I told the Shared Solutions people I'd go back on it in a heartbeat if they got it into pill form. There wasn't anything about the drug - aside from the dents - that I didn't like.

Hang in there, keep weighing it out. It's okay not to jump toward one answer or another, especially if your perspective changes from day to day. I mean, You don't want to quit taking it and then give yourself a harder time by second guessing yourself. Whatever decision you make will be the right one, don't doubt that. :)

I am not a doc, but I did get a bad nights sleep last night... With that said, keep in mind that the primary reason why they pick the 7 areas for injections is that those are areas where we typically carry the most subcutaneous fat in our body. But for many of us, those are not the ONLY areas we have such fat. So check with your doc, but I would suggest making use of other areas where more widespread fat is present more often and use the places where the dents are getting bad less frequently.

Hope you get things figured out soon... :hug: that mental torture is crazy, going back and forth, I'm doing it right now as I try to figure out what I should be doing for myself right now.