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Anyone discontinue Copaxone?

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    #16
    I'm with Michella

    just stared drinking Kefir, I juice regularly-2x a day. Following the GAPS diet. Lots of fresh-ripe fruit and veggies, meats, animal organs, soups, stews and casseroles.

    I stopped Copaxone when I heard they were petitioning the FDA to block Tecfidera from being released.

    Also tasking high vitamin with probiotics & protandim.
    I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

    Bill Hicks

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      #17
      I've had an on/off relationship with Copaxone for 12 years. I honestly think I got a "bad" box last time because every shot gave me a weird reaction. I have a doctor friend who has MS and is on Copaxone and she and I have talked about this before. She has no problem with people stopping the shots.
      Marti




      The only cure for insomnia is to get more sleep.

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        #18
        Originally posted by Jade Divine View Post
        I started juicing fresh vegetables daily and it has increased my energy, mood and decreased my pain. I removed dairy and gluten from my diet for about 2 months as well and I felt fantastic - it truly felt miraculous. I had also reduced my copaxone to every other day with MS approval.
        Just curious Jade why you decided to continue on the copaxone. I hate it! I've been on it for a year and I'm scarred all over and the injection site reactions have been so painful and last for days..let alone that stupid heart attack feeling thing has happened three time...I went through hell for 8 years with rebif before that. I feel like these DMD are robbing me of healthy years Your post is the reason I came in here and I don't quite understand if you feel so good with the diet changes why you chose to continue treatment. Can you explain...I am so scared to stop because "what if" but I don't know how much longer I can continue this...your diet is exactly what I am doing no processed foods..no dairy...no gluten...only wild meats and fish or organic chicken once in a while...help?

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          #19
          Wish I had seen the last post sooner!

          I discontinued Copaxone because I had drenching night sweats every night. I was waking up 2-3 times a night, covered in sweat, freezing and shaking. I would have to change my clothes, change sheets.

          It was a nightmare. The neurologists told me it wasn't a side effect of copaxone. When I stopped taking copaxone, the night sweats went away.

          It has been about almost a year now. I've had one new lesion in that time, no relapses requiring hospitalizations. The neuro wasn't that concerned about this new lesion. She said she agrees that I am doing better without the copaxone.

          I just cannot trust any of the drug companies now. I'd prefer to try and stay as healthy as possible and hold off on medication until I have to take it.

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            #20
            Can I get name of your doc? Looking for doc that routinely prescribes IVIG for RRMS

            Hi. I am searching for a doc that uses IVIG regularly for RRMS. I am willing to travel. Thanks.


            Originally posted by sgrammied View Post
            I stopped Copaxone. But I stopped because I became allergic to it.
            I do IViG every two weeks. Was doing that even before using C.

            I feel no different now than when I was on it.

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              #21
              Originally posted by Jade Divine View Post
              I'm planning to stop taking Copaxone soon. I have started eating healthier - working from the OMS diet.
              Jade

              What is the OMS Diet

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                #22
                overcomingmultiplesclerosis google George Jelinek in Australia- ER doc has MS, mother had MS. highly motivated to do research- holistic - lower stress, meditate, diet intervention, exercise along with DMD

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                  #23
                  copaxone and herbal alternatives

                  I started on copaxone. I had too many severe reactions.
                  Started Avonex. Couldn't take always feeling flu symptoms. Now going to talk to my doctor about herbal treatments. Appointment tomorrow.

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                    #24
                    15 years

                    After 15 years of daily injections, with frequent nasty injection-site reactions, I sometimes take a day off. Maybe once every 2 weeks or so, I feel like I am entitled to one day without that dam burning, itching pain.

                    However, when I was first dx'd, the neuro pinned the Primary Progressive label on me, and said I wouldn't benefit from any of the ABC drugs, as they were called.

                    My MS was one relapse after another, with maybe a few weeks in between events. It looked bad.

                    I fired him, and got a new neuro, who went back over my history and changed my DX to R/R, since it not only fit my disease activity better, but would allow my insurer, Kaiser Permanente, to authorize a prescription for one of the available drugs.
                    This was 2000, before some of the new ones were available.
                    I had to mix the medicine myself, and the needles were a lot bigger than the new pre-mixed injections.

                    It was a major effort to do the injection, and I had horrible reactions. But over the years, something else happened.....
                    My relapses became less frequent, and the severity was way less. By the 3rd year of Copaxone, I wasn't having much disease activity and my life got back to almost normal.

                    I went back to work...taking only a handful of days off each year due to MS, and then, retired in '14.

                    I have to think it is the Copaxone that made the difference between having a life, and going down the tubes.

                    In a year or so, I will lose my 100% coverage, and will have to pay 25% of the cost, which right now would be about 1200 each month. Our combined income is adequate to cover the cost, but I am seriously conflicted. It seems like a crime to pay so much, for a drug that should cost less. Now that there is a generic it should be a LOT less, but no, it isn't. Glatopa is priced about 15% less than Copaxone, so that doesn't help much.

                    I am now in the grasp of a relapse, or so it seems, and it is reminding me of how awful MS is. It takes no prisoners, it just kills you on the installment plan.
                    Jim S.

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                      #25
                      Never Again

                      I started Copaxone shortly after my DX 4 years ago and continued for one month since they said it can take some time to get used to it. Other than having trouble with my vision and not being able to find out an answer until they did the MRI/spinal tap, I had absolutely no clue that my vision trouble would be attributed to MS. So I was scared and immediately jumped into the Copaxone route. Wow, what a mistake. I went from not feeling any symptoms (other than the vision) to sitting on the couch like a zombie for the entire month of shots. It was so bad that my husband had to escort me to the restroom and to bed. Needless to say, at the end of that first month, I discontinued it and chose to never use any other drug.

                      Now we eat Paleo and if you didn't know me, you'd have no idea that I have MS. I eat right and exercise almost everyday with absolutely no problems. I'm all about healing ourselves with food/supplements over ANY drug that the FDA decides they want to shove down our throats. I may be in the minority, but with my past experience, my body just doesn't like drugs.

                      I wish you the best of luck and hope you can get the same experience through healthy-living as I have!

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                        #26
                        Copaxone

                        I was on copaxone for about 2 years. I had reactions every time I did it, from site reactions to severe reactions.. My Neurologist said severe reactions only happen every 1/100,000 injections. So a couple a month was enough for me. The reactions included body heat, feeling like I couldnt breathe, rapid heart rate.
                        Went on to try Avonex but I had flu symptoms for 3 says a week after each injection.
                        I am not on any treatments and I am always looking into more nutritional options.

                        I found on the internet about vitamin k in parsley, this is what I found:

                        Vitamin K
                        Two tablespoons of parsley have a whopping 153% of the RDA of vitamin K, which is necessary for the synthesis of osteocalcin, a protein that strengthens the composition of our bones. Vitamin K also prevents calcium build-up in our tissue that can lead to atherosclerosis, cardiovascular disease and stroke.

                        Finally, the vitamin K found in parsley is essential for synthesizing sphingolipid, the fat needed to maintain the myelin sheath around our nerves, and therefore our nervous system as a whole.

                        I am not a doctor and This is only posted as information.
                        This is not posted for anyone to take this as an alternative to stop their therapies. Please talk to your doctor before you stop or start any meds.



                        QUOTE=Jade Divine;1390895]I'm planning to stop taking Copaxone soon. I have started eating healthier - working from the OMS diet.

                        I am hoping to read some stories about people who have stopped taking copaxone and started healing MS with nutrition. Good nutrition is making me feel better than any medication has & there are too many side effects from the DMDs. Plus, I'm sick of feeling sick from the DMD's.

                        Thanks.

                        Jade[/QUOTE]

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