I'm wondering if anyone has experience going off Copaxone. If it can be stopped immediately or if I will need to taper off? I could call Shared Solutions (SS), but don't think I'll get a positive answer since I'm wanting to end this treatment. I will be calling my neurologist on Monday, I'm just not sure I can do another injection.
I am having terrible ISRs that are increasingly getting worse the longer I'm on Copaxone.
I am left with huge welts that are approximately 1/2" deep and 3" around, they are red, hot, painful, and are lasting longer as time goes on. I still have a nodule approximately 1.5" in diameter from an injection 8 days ago, it is still hot, red, and painful. The autoinjector terrified me, so I have only done manual injections. I take approximately 30-40 minutes of "me" time to go through the process of warming the injection site area, swabbing with alcohol, allowing it to dry completely, injecting slowly (usually to a count of 20), holding a cotton ball on the IS for a full minute, if not 2, and 20 minutes of cold therapy.
I have been told by SS to gain weight because I don't have enough body fat.
I'm trying but not getting very far since I'm on a modified diet. I'm also a runner. My neurologist has offered Rebif as an alternative, but refuse to use interferon. I am depressed, which is extremely unusual for me. Tearfulness is increasing daily. I dread even thinking about doing my injection each day and it is becoming harder and harder to convince myself that I am "blessed" that there is a treatment such as Copaxone available to me.
I had surgery on my foot in early December and was assured that the Copaxone would not effect my ability to heal. And while the surgery site healed well, I have not been well for 3 weeks, alternating from a chest cold, to a migraine lasting 7 days, and back to a chest and head cold.
So, today I've been reviewing my dietary and supplement options. My two exacerbations were 5 years apart and the results, though scary and frustrating, were relatively minimal. My brother is currently on the Swank Diet to manage his MS and I'm REALLY leaning that way. I have never done well with traditional medicine and have most often turned to alternative medicine to treat my ailments (FMS, migraines, loss of appetite, etc) and since being on the Copaxone I feel like I don't know my own body anymore.
Sorry for such a long post, just wanted to clarify where I'm at with things.