I did Rebif for2 years, 2 tries of Novantrone with vomiting, a try of 4-AP. No huge side effects, some nausea, etc., but nothing helped. As a PPMSer, neuros didn't expect them to. Back when I believed I took my Rebif religiously but said to DH, why should I feel cruddy everyday on off chance it MIGHT help me? Now that I'm in a chair 24/7 (could not be stopped) I kick myself for wasting time when I could still walk around by taking drugs that made me feel yucky and wasted time. Honestly, they impeded me more than the chair. Now I take no drugs but am in a chair, neuro and I both know. nothing would have helped. I am still interested in fighting, want to try Fingolimod, it's for RRs, will try to get anyway. It's something for each of us to make decisions on. We are all so different. Drugs are great for some, not for me.

You have my empathy, for sure.

I'm struggling with that issue, also, and add into the mix a personality that constantly asks "what if? what if?" Especially, "what if I make the wrong choice and REALLY screw up my life??"

I still say it's a crap shoot, mainly because the disease IS so unpredictable and individualized.

My Dad had MS over 40 years, never took an MS drug, never ended up in a wheel chair. BUT! I grew up under "Tomorrow might be the day your father wakes up and can't get out of bed." I think of that stupid tv ad for some drug, the one where the stretcher follows the guy around, waiting for him to have another heart attack.

Copaxone was (apparently) causing me debilitating anxiety (and yeast infections--I'm sure it wasn't a coincidence). I took an "unauthorized" break, and my neuro wants me to try again, see what happens, re-evaluate in three months.

I look at those stinkin' needles, and I either see a miracle that I should be accepting, or a snake ready to strike. I keep telling myself, just give it a try. Then: cluck cluck cluck. I get anxiety thinking about the anxiety.

Dej, I can't believe you have stayed on copaxone this long, with the problems you have been experiencing. I think we were dx about the same time and you started copaxone a few months before me. You have certainly given it the "old college try." Maybe, you should give your body a break for a few months without the meds and then consider trying the new oral med once it is approved this Fall.

Dej, I had to stop the Copaxone too. Too many unwanted, unprovoked by me problems, and internal infections. A few Neuro's tried to tell me to keep trying it, sure--it wasn't their body being torn to pieces and miserable.

Then the GYN dr. got involved, and major yeastie beasties took over my body. 6 months and many medication tries to fix the Copaxone problems to no avail.

Finally GYN dr. gave up and he sent me to an Oncologist, to be sure, due to swelling and an untreatable infection, even thrush. The Oncologist was a scientist with his own staff and medical team, with testing right there in his lab/hospital.

He said after a few visits, looks and testing, he would try an oral shot gun of drug treatments all at once, and that it was the Copaxone that caused all my troubles. He had no big Pharma gain, so he was not reluctant to say that the Copaxone was my problem. He studied the "C" drug upon my first visit. It's chemcial make-up and structure.

I took his shot-gun, last try medication, after many months of other doctors medication, from Neuro, PCP, to my GYN dr.

So when the Oncologist tested all fluids under microscope and took biopsy of many skin areas, in and out, he made a medication combo, and it cured the problem with no side effects to me in two to three days. (yippee)

He said stop the "C", it is your problem. I wanted to kiss him on the last visit. I was so miserable and sick prior to seeing him. It wasn't cancer, just what "C" did to me over 3 1/2 years on it. Even the insert says it doesn't know how the "C" works, but people wanted a MS drug. I did too, after the Avonex flu.

Now maybe others don't have problems with it, or don't know it is involved with some of their other problems. Who knows, if it works or not? 32 percent is not worth my body becoming full body septic.

I just was very happy to stop the day he said, STOP the "C". I never looked bad or regretted it. This was not even counting the site reactions that made me not be able to wear anything but loose pants and tops and be in pain with redness and huge swellings of the skin. I took pictures and showed the doctors, redness, swelling and the huge hives, I had still, at the two week old sites.

My Neuro said he had a few people with the same problems I had. Duh! Why didn't you mention that before to me? He is not my Neuro anymore. My new Neuro of three years understands and agrees.

This is just my story. Many people on "C" or the interferons are afraid to stop for fear of progression. I had this MS disease since symptoms in 1978, that drs could see, to my dx in 1981. Long before any DMD's were around, like Tom said too.

Perhaps these drugs cause more problems than we realize, and the side effects we go through are self inflicted by taking these expensive shots.

I think everyone should be their own advocate and make their own decisions, the Neuro's don't take these shots, don't have MS, so they can really only guide us, not tell us what to do, unless it is an emergency situation.

Stepping down off the soap box now.
{{{{{ Dej }}}}}}

If I'd had the same problems I'd likely do the same thing Dej. I hope they'll find something that will work for you. What about the upcoming oral meds?

i think you're making the right decision.
it's the deciding that's the hardest part. after that you'll find a big release and that it's ok.

almost like the struggle i had over giving up my nursing career. i was in agony trying to make that decision. i was up against the wall. then i finally quit. when i came out the other side i found it was the biggest best thing i could have ever done for myself.

good luck. let us know how you feel.

lets see. I have


visual issues
Dry eyes
Dry mouth
Huge liver
pancreatitis
pancreatic issues
liver enzymes up and down
horrible skin issues
dry skin
exzema
psoraisis
lithotripsy (BIG dents down to the muscle)
bumps, and scar pads from the injections
cant sleep.
wild vivid dreams
increased heart rate
decreased blood pressure
confused conversation, cant find the right words, or use the wrong words.
changes in my voice
balance issues
im exhausted!
my hair is falling out!
stomach has quit working,
and I have stomatitis
After injecting, I now get chest pains.

Everyone one of these things can be read on the side effects sheet that comes with the meds. When I mention it to the MD, he tells me how rare those side effects are, and maybe I would have one or two, but not 12!


Is that enough? why am I punishing myself?

Good Question. Stop now, why wait until your Doc can talk you out of it again.

I think this comes close to what I am trying to say. I think I would rather be IN a chair or dragging a leg, or really have it apparent that I have MS, and still have all my facilites about me. Sure 90% of the time, you can look at me and never guess I have something wrong, but ...at what price?

Its a horrible thing to say, but I believe that I would rather be chair/scooter bound and still have my ability to think, my energy, my personality, my sense of self, vs being able bodied and dead in the head.

Thanks for all the support!

yes, Barb and I were dx about the same time, and I remember the issues she had. horrible! I will end up with about 3 months of Copaxone in the fridge. I wonder where it will end up? I am blessed in that my insurance covers all but $6 per month for me. I would hate to throw it away. I wish I could gift it to someone here who pays an arm and a leg for it.

I will continue to struggle till Friday when is MY deadline to make a choice. I am just so tired.