Over the summer I lost my insurance and couldn't continue my Avonex treatments due to the cost. After a month without the stuff, I decided to just NOT get back on it because I felt SO much better. I also started taking half a grain of thyroid every day around that time.
I know I'm playing with fire by not going back to a neuro and not continuing my meds, but I really can't face it again when I'm feeling so very normal.
Hi Lisa,
I have an appointment with my neuro tomorrow and im going to tell them that I dont want to take Avonex anymore. Ive been on it for 7 months so ive given it a fair crack but its made me feel so much worse. To put things in context, I dont have any problems between relapses still after 13 years. I have my bad times during relapses but in between I feel pretty good. From when I first started avonex in March I have basically felt fluey two days a week every week and I also developed anxiety and panic attacks. I've had enough of feeling rough and anxious now but have fears about whether stopping is right or not. My gut instincts tell me that whatever the consequences, stopping avonex is the right decision for me. Plus I'm 35 and so my partner and I will want to try and have a child in the next couple of years if were lucky enough for that to happen. My partner totally agrees with my decision.
I found it really reassuring to hear that you feel better since you stopped Avonex. Keep me posted on the site on how things are going for you and i'll do the same. All the best to you mate.
Cheers
Rach
Rach -- I decided that if the Avonex was stealing almost 30% of my life, the stratistics for it's effectiveness just didn't warrant such a loss of my LIFE! And here it is nearly a year later and I'm feeling better than ever. As well, my episodes were 1991/92 and 2002. I can live with the chance that I'm not "due" for another one for several years.
I'm so glad to hear others are just like me and have my same thoughts. I took Avonex only 2 times and I just felt like sh1t! I know I just started it, but i've read so many people who were taking it said they were so tired, and just didnt feel good, and that the side effects did'nt go away that much. I agree with Lisa thats it no win situation. It helps with 30% of a normal life(maybe) but takes away 30% too because your spending it in bed. And now with the new news that Avonex users should have your blood checked every month for liver damage scares me. I just got diagnosed 2 months ago. I have a lot of research to do before I jump into any more treatments soon. Good luck to us all.
---Moon
Wow, :bouncing: I'm so happy to read that it's not just me...as my neurologist would have me believe. I took avonex for about a year and a half and it was hell in an injection. I, too, though, 'heck, I'll take my chances with this disease 'cause avonex not only didn't help, it made everything so much worse. Following an injection, it felt like every joint in my body was literally going to break; and I had ALL the typical flu symptoms. When I complained to the doc, she said 'Have you tried taking a Tylenol prior to the shot?' Needless to say, I thought ugly thoughts about her and her reply (not enough to change docs, though, 'cause I'm too lazy to go through the hell a change requires...heck, I barely go as it is ;) ). Most people I know (myself for sure) DO EVERYTHING HUMANELY POSSIBLE before going to the doc...it just seems so condescending...like if they downplay the symptoms we won't feel them as much.
Now, she wants me to take the daily shot...I'd say never, but that's a long time and things can always change. I really wonder if the ms world (docs/organizations/etc) has been so desperate for any breakthroughs (medications) that ANYTHING is better than nothing. Well, if any are listening: That's so not true. I felt so much worse on Avonex then I had at any time...and I've had ms about 16 years.
Also, my doc never sold avonex to me as any kind of cure; she maintained that it was a long-term thing...that it'd benefit me in the long run. What she failed to realize (and I failed to communicate...I'm so not a drama queen that I'm just happy to be able to walk) is that quality of life is every bit (if not more so) as important as any long-term stuff. I'd gladly take 10 years of non-avonex with my regular, painful symptoms to 20 years of avonex with less of my regular, painful symptoms…it’s that bad.
Hi Moon,
The thing with MS is that the immune system is over eager to attack what it wrongly perceives as an enemy, which in MS is a component of myelin in the central nervous system.
The idea of the CRABs is to suppress the immune system, thereby decreasing the chance of the immune system going into attack mode against the myelin.
By keeping the immune system supercharged you may be setting yourself up for an attack. That's the theory, anyway.
In the situation of the Tysabri and Avonex together, many people speculate that the immune system became too suppressed, allowing the PML to get a foothold in the body. Perhaps the Tysabri alone will work out okay.
Before going on your own regimen of supplements, you may want to consult a naturopath familiar with treating MS.
One other thought is that you might want to read about the Swank diet, which some people have said helped them manage their MS.
My daughter has been diagnosed for 5 years now, though we are pretty sure it was active in her for several years before that. She was 19 when diagnosed.
She has had every single symptoms listed for MS including blindness, hearing loss, vertigo, fatigue, all of the sensory stuff, total paralysis, neurogenic bowel and bladder problems, speech problems, cognitive issues. You name it, she's had it. Her doctor says she has aggressive relapsing remitting MS, possibly secondary progressive as she is starting to have a slight decline even in her remission times.
She has a four year old daughter who was recently diagnosed with a disability on the autism spectrum, but who is an absolute sweetie and a perfect fit for her momma.
I'm sorry about your diagnosis. No matter what age you are when you get it, or what type of MS you have, MS throws a curve ball into a person's life. You will adjust to it though - it eventually becomes just one part of your life that you have to deal with to varying degress, but otherwise you learn to live life anyway. At least both my mom and daughter view it this way.
I just wanted to add that I take the daily Copaxone injection and the only side effect I suffer is the burning sensation immediately following the injection for a few minutes. It is somewhat like a bee sting. Copaxone does not cause the adverse side affects that AVONEX does. :)
HI-Lisa, I understand what you mean about your Avonex. I am on Beta-Seron and my insurance is about to lapse because my husband is in the hospital.....longer story. I have noticed that if I don't take it I feel better. It gives me flu-like symptoms, I cannnot sleep etc. I ahave 3 shots left and I don't know if I am going to take those. Everyone is different, so good luck in whatever you decide to do. You know MS is like a bandit-it comes and goes......Kahlia
