[PunkDizzle]

man i have had it with these MS meds.. i can't take copaxone because i am allergic.. rebif is now tossing me into a wild depression.. (not suicidal) just like i don't care or want to do anything anymore and nothing makes me happy.. i just want to lay in be all day and do nothing... i refuse to try TY because i feel it is not worth the risk for me..

i swear i feel 100 times better off meds then i do on them... antidepressants are not an option for me at all because they make me suicidal.. so they are out of the question.. and i hate the idea of putting a band-aid over the real problem.

i just don't know whats is a good idea to do anymore...

but i know what i want to do.... i want to stop my injections and just take my chances.. at least my quality of life will be back to normal for me.. its really a crap shoot either way.. since i have had a few relapses on the rebif anyway..


as odd as i sounds i am seriously thinking about asking my neuro about what she thinks about me trying *cough* Medical MJ.. to help with sx because from past experiences.. i know i will only feel crazy for a few hours and not depressed... unlike with rebif where i am a dang lump on a log 24/7 anymore..

i don't know its late i am tired and talking out of frustration... but i do know for sure i want off the rebif..

i know of a few ppl in my support group with RRMS that take nothing and have been fine for a long time and just take IVSM when needed ... i like that idea...


i guess this is more of a rant then a question... but i have no one else to talk to but you all on here that really understand..


ugh.. i am just gonna go sleep on it maybe ill think different about it in the morning... but i doubt it..

[Twinkletoes]

Aaacckkk! Sorry about all that, Punk.

I was on C for 10 months, but quit in January. I feel so much better, but feel like I'm playing Russian Roulette with my health. I want to be proactive, but tired of shots and not ready for Tysabri.

I've been seriously looking into going on LDN (Low Dose Naltrexone). You just take a capsule every night at bedtime. There are a few here on NT that take it with good results. Even a thread, if you want to check it out.

Good luck, Punk. Hope you find something that works for you.

[Kitty]

I can relate, Punk. I've been seriously considering stopping the Betaseron I'm on. I still have relapses while taking it and I'm tired of the shots. Plus, the consensus is what...30% reduction in flares while on a DMD. Those stats are not blowing me away so I might just give it a try. If nothing else, it will give my body a break and if I want to I can resume the meds at a later date. I have not spoken with my Neuro about it - I already know what he will say. He was pushing me to go on Ty and I wasn't even having any trouble with what I was on (as far as adverse side effects). But, it's our bodies.....we should be able to decide what we want to do.

Taking a break from the Rebif doesn't mean you can't go back on it later. Taking a break might be a good thing.

If I do decide to stop I will tell - not ask - my Neuro about it. If he gives me a hard time well, maybe it's time for a new Neuro.

[kicker]

I did Rebif for 2 years, went on a vacation, asked the doctor, he said I could stop for that week. When I came home, we both agreed I could go off it, really we both knew I was PPMS and it wasn't helping. But for RRs, it is Russian Roulette. As I told DH, it was reducing my quality of life, would rather feel good while I could still do stuff, no guarantee it would make it better when I was older. But knowing I was really PP made it easy to stop. Sometimes now I wish I could be more pro-active with this, do something. Read about on RRMSer who did HyCy and sailed through it, another MSer got all kinds of complications. It's really hard being sick with all this conflicting info. Do what is best for you and won't be haunted later, no matter what your decision.

[NaeNae]

I had horrible side effects from the Rebif...went bald....flu like symptoms all the time fevers all the time, depressed etc. I went on Ty despite the side effects and it was wonderful, I felt great had more energy, had less weakness in my arms and legs, and less "nerve" symptoms..ie pain and spasms. The first infusion I was really nauseated after and had some abd pain, after that no problemo!

[lady_express_44]

I've used LDN the last 3+ out of 18+ years, and never tried anything else. I doubt I am worse for wear then those who've used the mainstream meds.

Personally, I'd rather have 'quality of life' for as long as I can. It's the luck of the draw whether they are working for us too.

Cherie

[MSacorn]

Punk
You are the best judge of what is working or not for you. Trust your insticts. I tried A, R (6 mo each) in between years, C with Imuran, for a couple years until my triceps caved in, literally.

After stopping C, I stayed on Imuran, no s/e. After moving out West and stopping Imuran I had the worst MS year ever. I begged my new doc to put me on it. He did eventually because he was out of ideas. I'm back to status quo.

There are other chemo type meds, ex: Methotrexate, once a week small tablet. Imuran is 1 tablet 3x day. Talk to your doctor. I've been trying to get my doc to okay trying LDN.

I wish you lots of luck and hope you feel less crummy soon. Keeping you in my thoughts.

's

[Twinkletoes]

I know this is Punk's thread, not mine, but appreciate hearing what's worked for each of you and what hasn't, so I found myself "thanking" you all!

Kelly, I feel like my old neuro was pushing Ty on me. The new neuro wouldn't prescribe it! Guess which one has his own Tysabri infusion clinic???

Pursuing LDN. Cheap and can't find any side effects, other than crazy dreams and sleep disturbances. Got those already, Lol!

[starfish]

I am not on anything right now. I tried Beteaseron. I went up in dose very slowly. However, I got so sick, so frequently, had trouble sleeping and then had bad anxiety, etc. I went off and I felt so much better.

I am not so quick to go back on anything else. I believe quality of life is important and I don't want to be miserable everyday of my life on a medication that might slow things down.

If you can tolerate a medication I think go for it. I could not.

I exercise to stay strong as well as reducing stress, and eat well. We all have to do what we feel is best at the moment.

[SallyC]

I hear you, Punk. I hated the side effects of the interferons and the quality of life was so much more important to me.

LDN for five+ years and feel great (most of the time)