To take treatment or not?
 

I know this is a personal question I must answer for myself, but somehow, someway, I am hoping, praying that I can know what I should do.

I have been allergic to many medications, I have failed on tysabri and gilenya. My neuro will not allow me to try Beta or Rebif, do to my allergic reactions. Avonex, probably not because of my seizures and seizure meds.

That leaves me with Copaxone and Novantrone. I left my neuro's office today with instructions to go research the two and let him know which one I want to try.

Well, I looked up the Novantrone, and well no thanks...that is not for me.

So it is Copaxone or nothing at all......and right now, the nothing at all seems very good to me. I will probably have an allergic reaction to the Copaxone anyhow.

That leads to my initial question.....How many here have just decided on no DMD's? and Why?

I am riding bareback thru the world of MS. here is my story.

After chasing a dx I was told many things. migraine syndrome, anxiety, faking...I noticed that no matter what, after each flare I got better, and normally went pretty much back to the midline. no real damage done. it was a royal pain during the flare, but if I recovered, perhaps I dont really have ms? no?? Years later switched states and the local guy sorta freaked me out. "I think you have MS! how could your old MD not have seen this?" so, off to the MRI while he pulled old records. The old MRI and the new MRI showed clearly I DO have MS and I was given the whole "you must act now!" speach.

Went on Betaseron after being given a dozen books, and videos, DVDs, free pens, free bags, and calls from drug reps asking if I had any questions about the medicines. I chose Betaseron because its what ViSeeU takes, and she was on it a long time, no troubles, and it didnt need a refrig and I travel...several reasons. 3 months in my blood work was thru the roof! I had set a clinic record for LFTs and scared the poor nurses to peices. They yanked me off the stuff and tried to put me in the hospital. I refused. I did naturpathic stuff and washed off Beta. I refused other meds till my LFTs returned to normal. Which it did.

I was told ALL interferons were off the table for me. To pick TYsabri or Copaxone. Well, TY scares me to peices, so I picked Copaxone even tho it was a daily shot. It took more than a year for it to show it was working on me, but once it did, no real troubles till the 2nd year started to round out. I felt AWFUL! I was confused, I had dents forming big pockets in my arms, and legs and tummy, and I was exhausted. I thought...it isnt worth it! I still had the same amount of flares that I had while off the stuff, but now I was having damage that stayed after the attack was over. My vision stays fuzzy. My left foot has this thing that I cant pick up my big toe, and I drag it alot. I never did that before. I had bad psoraisis, and itchy skin. I would sweat, and bloat and the night sweats were unbelievable. I was in short...miserable!

I did a bunch of research because my MDs were saying I MUST MUST MUST pick a drug. I thought of taking the Sally way and choosing LDN, but I am on narcotics that I am not willing to give up, so I started to research TY. STill scared me! Galyna or whatever had just as many side effects as the shots did at a larger price. It seemed to me that there were no great options.

I found out that Avonex, Betaseron, Rebif and Copaxone have about a 33% chance of preventing the next relapse, and IF you have the next relapse it has about a 10% chance of making that relapse less severe. huh?? :confused: You mean to tell me that I am taking stuff that has about a one in three shot of stopping that next relapse, but it has a 1 in 1 shot of making me miserable, itchy, swollen, bruised, battered and emotionally stunted to the point that I cannot be part of my life? Ty has about a 39% chance of preventing the next relapse. Galina has the same effectivness as the injectables.

Armed with my newly found info, I confronted my MD and told him NO MORE! I am tired of the side effects. I showed him a diary of what I go thru everyday! and told him I would rather be in a wheelchair and be able to participate in my own life, than take this med and stay as miserable as I am. (i had begged for a year to be dismissed from this med) He looked at me and said "ok. you are done" FINALLY! He heard me! He told me I had done my research I was not making my choice off of one or two bad days, and that I was making a choice based on me and what was best for me. He really wanted me to consider taking another med and gave me one last lecture.

its been more than a year now that I have been DMD free, and I gotta tell ya. I feel SO much better! I am cooking again, I am cleaning again. I am walking each morning. I am eating better and using my nutrition as my pharmacy. I am healthier than I have been in years. Do I still have MS? you betcha! Will I probably have another flare? you betcha, but I was gonna have flares with or without the drugs.

Now, this is MY choice. I made it after a ton of research, and prayer, and thoughtful consideration. It is not the right choice for everyone, but I wanted to show you that it CAN be done, and you will be surprised how many of us choose it.

Good luck with whatever you choose. :hug:

thank you so much for taking the time to write such a detailed reason for why you stopped. I really appreciate it more than you know.

I do have a question though....I thought, like you said that the ABC-R had a 30% effective rate, however, I had read that TY and Gilenya were really high like 65%??? Is that wrong?

Hi Dejibo

I am so impressed with your attitude, and I am starting to think the same way. Is it better the devil you know, rather than the long term effects of these super powerful drugs that we are told we 'have' to have?

I am coming up to 3 years on Ty, after 8 years on Beta. I have barely relapsed during this time, but who knows - maybe I wouldn't have if I hadn't taken all the drugs either.

I wish I knew what I am doing to my body in the long term.

Lyn

Copaxone less than 1 year. I have very mild MS (sensory symptoms), so for me stabbing myself with a needle daily to remind myself I had MS wasn't a way of 'living'. Add to that I began to have muscle spams in my arms when injecting (so I was told to double inject my stomach and skip a shot - yes, let's still make sure she's paying LOTS of money to us by moving around shot locations! Durrrr :wink: ).

I did some thinking, reading.... while on C, I had already gone almost Swank MS diet anyways (cut red meat and less than 15 g Saturated Fat daily - no Trans Fat) and thought,

"You know what Laura? The DMDs are at most a 30% chance of slowing progression... no one can tell you if they're working, where's that 30% number coming from anyway? Oh right, we only put RRMS on C - funny my neuro even said the logic behind not putting other types of MS on C is because it would skew the success of the numbers potentially, thus causing financial harm to the pharmas *gag* - $1,600 a mo in 2009 for C, is this really worth it?"

Not to mention the side effects. Who likes nightmares of their families dying, or peeing the bed at age 30+? Goodbye Copaxone.

Just my own personal story... Copaxone may help some, so for them I'm truly happy. It was not for me. I eat well and exercise, and that's what keeps me happy and healthy. Not a needle every day with side effects that, for me, were intolerable.

I also am not on any dmd's. I have not been since spring 2008. I was dx in March 2007. I first tried betaseron, but has an allergic reaction when increasing the dose from 25 to 50%. So the doctors are in agreement, I can not take any interferons.

Next I tried copaxone. I was on it for 4 1/2 months and had 6 IPIR's within that time -- the last two coming within a week of each other. In addition to the classic IPIR reaction, I would also get high fevers and shake for hours about an hour after each IPIR. So then I moved on to tysabri. I had five infusions and three infusion/allergic reactions. After the fourth infusion, they decided to test for antibodies and I did test positive. So based on the instructions from the drug company during the fifth infusion, they gave my an iv of bendryl prior to the actual infusion and slowed down the infusion time. 45 minutes into it I went into shock and had to be given more bendryl and oxygen. So that was the end of my tysabri story.:rolleyes:

Several months later I decided to try copaxone again. I had one injection. I did not experience an IPIR, but about three hours after the injection my temperature shot up to 103.2 and I spent several hours shaking. Representatives from copaxone said that was not a normal reaction:rolleyes:.

I have not had any new lesions since May 2008 and my symptoms appear to be stable so my neuro is comfortable with the fact I am not on any meds. We discussed gylenia, but he is not comfortable with prescribing it to me at this point unless I really want to try it. AND I DON'T:D

Good luck with making the decision. I know it is a tough one.:hug: One other thing I want to mention is that I was dx when I was 50 and I am now 54. If I younger I would probably still be trying to find something that I could tolerate.

I was diagnosed in 2005, did Copaxone for about 5 years with no big problems, then developed severe anxiety-like symptoms which went away when I took a break from the Copaxone. That isn't a typical side effect of C, as I understand, and my neuro suggested it was unrelated and I should try again.

After a long period of chickening out, I tried again, and after a few days developed the same symptoms. I'm now trying to decide what to do.

It's pretty much a roll of the dice either way, isn't it? I'm basically scared to take the drugs, and scared not to. As Barb mentioned, if I were younger, I would almost surely take whatever might prevent disability, even if a relatively low percentage rate. I've had little change in over ten years, and I'm 61. I'm really tempted to take the chance of not taking DMD's, but all the while recognizing that it is indeed a CHANCE. A risk.

I used to feel that not taking any medication that was specifically for MS was a sign of giving up....giving in to the disease. But not anymore. Once I did my research, started taking LDN regularly, and made some drastic changes in my diet I'm more of the opinion that we can do more to help ourselves than any doctor who sees us once every 6 months for 15 minutes can. For me that 30% chance of maybe reducing the possibility of a relapse is just not good enough.

I had my first flare 11 years ago but wasn't diagnosed. Second flare 5 years ago and MS diagnosis. Both flares were sensory with spasticity for added "fun". I researched all of the medications and decided that my MS didn't warrant treatment at that time. I have very mild MS and as long as it stays that way, I'm not taking any DMD's. I did start LDN two years ago; it got rid of my heat intolerance, which was my worst symptom. I'm doing very well.

I've never been pressured to be on a DMD and wouldn't listen anyway! I make my own decisions.

My mother has had MS since she was 22. She'll be 83 at the end of this month - she walks with a walker and has some incontinence - never took any MS drugs.

You have to make the decisions that you can live with. If doing nothing will nag at you, maybe you should take a DMD. If taking DMD's will make you miserable, maybe you shouldn't. I have no doubt that I'm doing what's right for me. If circumstances change, I'll research and reconsider.

I hope you're able to come to a conclusion that brings you peace of mind.

thank you all soooo much!

boy do I wish I had a crystal ball!

I go back and forth, and think maybe, I should just try the copaxone, then I truly know I did all that I could....but then I think about the daily injections and all the side effects I have read about, and I really just don't want to deal with it!

Also, I am trying to get disability, and wonder if it will make a difference if I am not on a DMD?

Really feel like I am having a pity party right now... sorry guys!