advice on DMD dilemma
 

I think I know the answer (and right decision) but I need some confirmation? reassurance? support that I am making the right choice.

I've been on copaxone for 6 1/2 weeks. It is making me feel like crap. I'm on anti-nausea meds they normally give to chemo patients to help with the extreme nausea. I'm taking prescription naproxen for muscle aches and flu-like feelings. The drug makes me fatigued. I am only half functioning in my life right now. It's all I can to do to get up in the morning.

I don't think I can take it anymore. I have toughed it out for what I think is a good while. I have an appt. on June 5 with the big MS clinic in my city. Every week that goes by, I keep telling myself, just hang on until then. You can talk to the new neurologist about what to do, what the choices are etc. Each week I say, maybe you will feel better if you last one more week. But I just don't think I can take it anymore.

If I go off the drug I feel like I am a failure or I am letting my DH down or letting the current neuro down. I think I am conflicted about what to do too because the C. people and the neuro seemed so surprised I feel this way -- of course, everyone says that C. is not supposed to cause flu-like side effects etc.

It it terrible to stop the drug? Should I keep hanging on? It seems a "quality of life v. possible benefit" question to some degree. I guess I just want someone to tell me that it is not the end of the world if I decide to stop the drug....that there are other options.

Ironic, that I just told someone else hours ago that they shouldn't beat themselves up about not tolerating meds but I can't seem to believe it for myself. :)

Thanks all.

Natalie8

You are your own best advocate. If something's not working and is causing more harm then potential good, let it go.

I have also tried A, C, and R and was miserable on the A & R for 6 months each, nearly a decade apart. The site reactions and dents C created made it unbearable too.

Trust yourself. Your decision is just that yours. No failures on our part, it's failure on the drug companies part.

:hug:

There is no Failing when it comes to taking care of yourself, whether that means staying on a drug and pushing through, or whether that means going off the drug cause it is to difficult to manage the day to day.

You have to take care of you first and foremost. Quality of life is the most important thing, and if a drug is impacting that more than the disease, I don't see how stopping it can be considered a "failure."

Have you started any other meds around the same time? Is it possible it is anything other than the copaxone. Make sure you make an informed decision, and discuss it with the docs. Then do what you need to do for you. YOU are what matters through all of this!

Natlaie, Go back and read what you said to me.:p I definitely understand what you are saying. I stayed on copaxone for 4 1/2 months until my neuro said "enough." But I was miserable during that time period and all I thought about was whether or not I could stand to give myslf the next injection. I experienced 5 serious IPIR's during that the 4 1/2 months (two in the last 10 days) and all of usual injection site problems that made walking more difficult. I spent almost every afternoon on the couch with a blanket around me freezing once I had given myself an injection. So I would also suggest that you listen to your body.

Take care, Barb

I have some allergies to meds, but my biggest problem with most of them is sensitivities and side-effects. I have tried many, and there ARE a handful that I have no difficulty with, but they are few and far between. That's one of the big main reasons I have never even tried the CRABs.

I give you credit for trying, and for waiting long enough to know when enough is enuff. You went in with an open mind, and it hasn't worked out. What more can you do?

If you feel confident in yourself that you will look back at this and know you gave it YOUR personal best shot (I know I gave it mine too, even though I never tried them ;)), then it's time to move on.

Cherie

Natalie

Someone said here that you are not failing the drugs, they are failing you. I tried Copaxone and suffered from fatigue so bad that I could not even get out of bed for days. Listen to what your body is telling you, not what others are trying to convince you! Stop the madness. It's ok to stop.

There are many people with MS who don't use any of the current DMT's on the market (me for one) and just treat the symptoms. Think about this, up until 1995, there weren't any of these drugs on the market for us. It was all about symptom management.

You have to do what's best for YOU. It's your body, your decision. :hug:

Natalie,

You are dealing with the age old question: DMD vs QoL:confused:

If the DMD is failing you then please quit the DMD. (It is failing you, you are NOT the one failing.)

Why give up your Quality of Life (QoL)?

If this happened to me (and maybe it is and I just don't know it yet) I would drop the DMD immmmmmmmediately.

Just tell your husband the absolute facts: the DMD is causing additional problems and in order to address the issue you are going to consult your neurologist. And, that it is a COMMON PROBLEM for DMD's to fail people which is why people switch to something else.

If Tysabri fails me then I will throw it out the window in an instant, regardless of how well it is working for others...

Your Quality of Life is much more important.

-Vic

i agree natalie.
if a med makes us feel worse then it's just not working the way it's supposed to. if it's any help it can take 8-10 mos for copaxone to start working in the body.

there are other meds and tx's available. you can talk to your dr about them.
and it's also your choice to not take anything. altho IMHO it's best to be on something if you can tolerate it and it's helping.

and, look at it this way. if you stop before your dr appt and feel better you'll have your answer.

i agree with all the above advice.
good luck. keep us posted.

Natalie
It's always a tough decision to make..But if your quality of life is such that you're miserable all the time, the drug is not working for you, it's working against you. I quit Rebif and Copaxone for that reason (and I had nowhere near the bad side effects from C that you're experiencing). It's always a crapshoot as far as this disease is concerned, you need to go with what you feel is right. :hug:

Listen to me and everyone else Natalie: It Is Not Your Fault!! C and the interferons failed me. My quality of life was in the toilet, I dropped the drugs like hot potatoes! I'm on Ty right now, so far so good. BUT like Vic said I'll stop it in a heartbeat if it fails me too. Everyone is different, don't blame yourself sweetie :).

I agree with everyone else, Natalie. You are not failing the med; it's failing you. :hug:

Quality of Life is very important, especially when considering how long we are on the meds. We're not all the same. What may work for me might not work for you.

Since I'm very sensitive to medications and had my share of rare reactions, 2-4 weeks for a bad side effect like nausea would be all I would allow before I was yelling at the doc. If they had to give me as powerful as an anti-nausea pill that you are on, I would've told the doc I was stopping all my recent meds one at a time to find the trouble maker. But that's just me. ;)

Take care of yourself, natalie. :hug:

You guys are the best!
 

Hi all,

I just wanted to say thanks for the kind and supportive words regarding my "dilemma" about quality of life v. the DMDs. I took the last C. shot on Friday night (now it's late Sun. night, or early Mon. morn. depending upon how you view it!) and I am already feeling a million times better. :Excited: I feel good about my decision and it's largely because of your support. Not to mention the fact that I almost feel like I could take a jog around the block and eat a large cheeseburger without wanting to barf. Whoohoo!

I have to say to all of you on this forum that :You-Rock:

Natalie

Good for you Natalie. I am glad you are feeling better!

I know when I stopped C, it took about 3 or 4 days for it to clear my system and I felt 100% better. I had the rare extreme fatigue reaction to it. SS and their entire staff told me it wasn't the C but I didn't have all the fatigue before it and the only time I have the debilitating fatigue is when I have a relapse. It does happen in less than 1% of the people who take it and I am in that category!

I hope you find something that works for you. Not everything works for everyone. That's why we have choices! Thank goodness!

Glad you are feeling better. I did too when I went off Beta this year. Within 2 days I was full of energy and felt like my old self again. I stopped getting sick every 6 weeks, and blah , blah, you can imagine.

My family was glad to have "me" back again. I was thinking about staying off DMD like so many do, unfortunately, I may have found a good reason to try something new.

Yes, I already feel like the real "me" is coming back. Glad you felt that way too. The quality of life v. treatment choices is a hard thing to grapple with I am beginning to learn. I have an appt. with a new neuro at a MS clinic in a couple of weeks. I wonder what they will suggest. Maybe Tysabri?

By the way Starfish, are you new on Neurotalk? :welcome_sign:[