ElishaCo~Mod: DepressionModerator: Heart & Cardiovascular Diseasehttp://www.healingwell.com/donate
I am sorry about the copaxone reactions. We do have a couple of people here that are on tysabri. I am sure they will be along shortly to give you their input. We had one member that had a bad allergic reaction to it and had to stop treatment. We have a couple of others that are just on it and they seem to be doing fine. Hang in there, they will be along soon.
Hi Elisha, nice to see you again!
I have had 5 infusions of Tysabri, and it's going well. For me, it feels soooooo much better than Betaseron!! I won't go back to an interferon either. Tysabri has helped me think more clearly, feel stronger, and have more energy. I look forward to my infusion every month!
On the downside, for me, which doesnt seem to be very common for most, is infections. I've had quite a few that have interrupted my schedule. However I had the same thing with Betaseron, so it could just be that I'm more susceptible.
I have very sensitive skin, so the monthly infusion has been so great in that regard too! No more red itchy mountains or bruises.
If I can help with anything else, feel free to ask, or you can email me too. I know its a big decision.
Thank you everyone for your posts
I saw my neurologist yesterday and I am glad I did as he was able to see that I am in an active flare. However, my treatment options are not good. My last MRI was done in Aug 05 right before I got my pacemaker as I also have an autonomic disorder (much like parkinsons) which lowers my blood pressure and heart rate.
My neuro is very good and I like him greatly but since my dx of the autonomic disorder he has been leary to do too much with the MS. He said that they would need to have a base line MRI inorder to start Tysabri due to the 1% chance of severe infection. I guess my older MRI's are not going to work. He wants to sent me to the MS clinic in St. Louis for a second opinion on this. Which I am fine with. I am just worried I may of exhaused all my treatment choices out there and now due to my pacemaker I will be prohibited from newer options.
It has been scary not knowing if my MS is spreading or not. Apparently the Copaxone wasnt working as it should if I was having flares while on it then having an allergic reaction too it. I dont know what to do and just feel lost here I guess.
I am sorry you are flaring! That sucks. But do remember, the copaxone just slows things down. Unfortunately there are NO meds out there that stops MS. At best, the meds can reduce the progressiong 20 - 40 percent. Many people opt not to take anything because all the meds have significant side effects and this disease marches on despite the meds. I hope the MS clinic has some positive strategies for you. I hope you are feeling better real soon.
I had a huge flare 7 months after starting copaxone. I was convinced the meds were not working and was all set for a med change. My MS specialist from UCLA said that it was working just fine. We have to hope and pray for something new to come along that resembles a real treatment.
I always thought that the injections that were out for MS where to slow progression and not to help with daily symptoms. But my neurologist said yesterday that with being on the Copaxone for 3 years it should of helped to slow down the number of flares I have been having. This is my second one this year. My PCP will not let me do steroid treatments (sol-medrol) since I get hives and some terrible side effects while doing it. My last flare lasted 2 and half months.
I shouldnt complain there are many who are much worse off then I.
I have seen an MS specialist who is at St. John's Hospital in St. Louis Dr. Green, I like her very well. It is also a 150 mile drive for me. I did spend some time in Barnes Hosp. after my pacer implant. I needed to have a lead revision done and I was sent by ambulance to St. Louis for it. I ended up there for 5 days and did see a MS specialist also...I think her name was Dr. Becky Parks?
You are right, the meds are for progression. I am not a big fan of the solumedrol either. I hated the side effects. That is a long time for a flare to last!!! Man that must have been miserable. I hope you feel better soon. You have a lot going on with the hear condition as well. Keep us posted as to what you decide and let us know how you are feeling.