My copaxone free life.
 

its been three months now since I quit cold turkey taking my copaxone. I have had several ask me if I notice a change. Lets review shall we. I was on Copaxone for 3 years after failing off betaseron after 3 month and a huge increase in Liver Studies. 3 years is a long time to stick yourself with needles.

On C I had bouts of pancreatitis, gastroparesis, severe constipation, severly dry eyes (had punctal plugs), fatigue and cog fog so bad most days I was out of bed by 9 and back in my PJs by noon. excema, psoraisis, nausea, severe anxiety, chest pressure, racy heart, cog fog so bad I was not able to drive, and many other things. This is just the highlight reel.

3 months out. I am up at 7am and stay up most days till 7pm. I occasionally lay down to watch TV for an hour or so mid afternoon. My skin has cleared up. my chest pressure is gone. my anxiety is back to my normal levels. I have enough moisture to blink my eyes. I dont require tablets to keep my mouth moist. I have not had a bout of pancreatitis since. I am driving! I am not perfect everyday, and I am certainly not where I was pre MS, but I am MUCH MUCH better without Copaxone in my life. I truly feel I was having horrible side effects to this med, and the MS center worked really hard to keep me on this med because I failed off the rest.

I am NOT Reccomending this for everyone. I am just so happy that after more than a year of research, trial error, and sickness that I laid down the needles. it has made a dramatic difference in my life. Yes, I worry about not having anything to fight this with, but for decades folks went without and faced it just fine. I would rather be in a wheelchair with my wits about me, than sitting in a kitchen chair and not be able to be part of my own life.

The dents remain. I massive dents in my thighs, arms, bum, and tummy. Those will never be fixed without plastic surgery. I still have some constipation but not on the same level as before. I still have some right sided rib pain, but 1/10 of what it was before. The night sweats remained, but a bit of estrogen seems to have fixed me right up.

Thank you for all the support you guys gave while I was riding that fence, trying to chose what to do. My DH was terrified, and i was a bit more than worried, but so far, its the best thing I have done since being dx with MS. I also will not be taking the new pill thats out. I will not be taking TY or LDN (would have to give up my MS contin) for now...im bareback.

I dont miss that daily dred that led up to being poked. I used to get massive anxiety attacks after each injection. Racy heart, sweaty, chest pressure, and burning. it was awful. I think I am ready to throw out the remains that are in my fridge. I just wish I knew someone who needed it. 6k worth of drugs down the drain doesnt make me happy.

I'm taking my four boxes of C to a prescription "take-back" at a local pharmacy tomorrow. But, my four boxes are over a year old and are all expired now (I quit in June of 2009)

I dont think I would have given it to anyone else back before it expired either. Too worried that if they had some weird problem with the C, they'd come after me because I'd given it to them....they could claim that I didnt store it right or something.

I think I'm quitting a lot of my medications. I tried Lyrica for a couple of weeks and am not happy with the results, so the samples are either going back to my neuro, or I might just add them to the stash of C I'm dumping at the Rx take-back tomorrow. (not giving the Lyrica away either. It's a controlled substance according to the pharmacist I talked to last night)

The only med that I'm planning on continuing to take regularly is Baclofen. But that's because I really dont like spasticity and it seems to have helped that and hasnt made me question it's effectiveness.

I've had more problems with a lot of medications in the past few years than I'm comfortable with. Stuff that I felt was causing me more problems than it was worth. The C is the only MS drug that I've tried, but I've had a few medications to treat the symptoms that didnt seem to help me and actually apparently caused me more problems.

I'm less than impressed with medicine right now.

I heard back from my MD. There is a local girl who takes the stuff and was considering quitting because she cant afford it. I am happy to take her the 3 full boxes and one half box that I have here. I spoke to her on the phone and she was tearful to think that she would avoid her huge copay for the next few months. Hurray!

That's cool that she wont have to pay for her C for a little bit. Hopefully it's working for her.

I'm glad you were able to find someone who could use your Copaxone. I did the same thing with Rebif way back when I had to stop taking it due to bad side effects. I also found a home for other expensive meds when I had to stop them. They might throw me in prison but I'll be kicking and screaming all the way there, lol.

I'm really glad you're feeling so much better now. :hug: You must have had some sort of allergy to it.

dej,

i am soooo very glad that you are feeling so much better.
you made the right decision.

Glad you're feeling so much better, Dej...and able to be in your life once again...

I am glad you're feeling so much better! I'm another who stopped taking meds. For 2-1/2 years my poison of choice was Avonex and the difference on vs. off was like night and day. On Avonex I had tons of pain and some days I could barely walk across the room. Hubby and I just thought the MS was getting worse. I skipped one weekly shot and wow, I was back to my old self - not pre-MS but still much better than on Avonex. I never looked back. I've been bareback (I love that!) since 2004 and so far, so good.

While I wouldn't recommend doing what we did to everyone, I think we made the right choice for us. :)

So glad you're feeling better Dej. I have been off the needles for almost 4years and feel so much better. For me the meds were worse than the MS symptoms.So far for me, no flairs or no new lesions. Hope all goes well for you.

Years ago I brought my unused Avonex to the Neuro, and then three + years later the Copaxone found a home.

My MS specialist said he had people in the clinic who could use the med (Avonex) and to bring it in at the next appointment, that one was eons ago.

Do you realize what just one needle filled with Avonex costs? Wow! 4 needles per box at what cost now?:eek: You could buy a new car every year for that kind of money spent yearly on these drugs. :eek:

I delivered the meds to my nurse from the local MD. I did NOT want to be the direct one to hand over the meds. I too like Erin worry that if this girl has the IPIR she will blame the way I stored the meds. They arrived cold, and immediatly went into the fridge and havent come out. When I used it, I would pull out ONE needle at a time. I double checked the packaging and exp date before I turned it over. Now, if something goes wrong, she will have to call shared solutions or the nurse, and not me. isnt that silly? I too was happy to pass it on, instead of throwing out more than 12k worth of drugs. Thats just silly. This girl is paying $340 per month or 10% of what the drug costs as a co pay! eeeek!

Thanks for all the support. :grouphug:

I was on C for 3 years. Have been off for about 8 years. I stopped because of the tissue damage at the injection sites. I'm not sure there is any difference in my MS on or off Copaxone.

I'm in the "I quit C" club! :D

Eating healthy, exercising and sleeping 7-8 hours a night is greater than $2k~ a month stabbing myself at a 30% chance of success.

Instead, I'll eat a diet aimed at reducing inflammation. Doctors don't like healthy eating and lifestyle changes like this by the way, it's not profitable for them!

:wink::rolleyes:

I'm sooooooooooo relieved and happy that you're feeling much better off Copaxone and don't regret your feeling. I'm also so happy that YOU made this decision, and went with your gut feeling. Way to go Dej, you rule! :hug:

My MD is pushing the new pill that is coming out, and I will be refusing it as well. I feel so much better since becoming a quitter. I dont feel like pre MS, but I certainly dont feel like the drugged up zombie I had become. My stomach still hasnt recovered. :(

Amen! Even if you don't have a condition like MS this lifestyle can only show improvement.

Since I have been eating healthier, drink only purified water, no HFCS or sugar, no poultry or beef that has antibiotics or hormones added the difference is night and day. Of course, I'm taking my LDN religiously and my vitamin supplements.

I realize while this is working great for me it might not produce the same results for everyone and I respect that. If some folks have found that a DMD makes them feel better and can afford it then more power to them. For me, this seems to be the magic ticket.