i've decided not to take the meds... I have a ?

[sunshine008]

hi so after really thinking long and hard, looking at all the side effects common ones with each med category and looking at my 12 year old daughter i decided no meds for me, not right now at least.

I"m a little nervous about my decision, it was a hard one to make. Yet I want quality of life, and if i'm sick from injections and can't be there for my daughter, myself and my family what good am I? I know this decision differs for alot of diff. people. I respect all, and am not anti meds at all. I just had to weigh the risks and benefits for myself.

So, I have the avonex coming in the mail after speaking to the company and drug rep.

My question is do you think my neurologist will stay onboard without me taking medication? has anyone kept their neuro while handling it thru supplements, yoga, dietery changes?

I still want mri's done at certain intervals to check on that brain of mine and see what it's doing, and want the neuro exams.

Yet i noticed since i've been doing my yoga twice a day my last neuro exam i was able to touch my nose, my leg pain has decreased, and my balance is a little better.

i pray i am doing the right thing. so hard isn't it in the beginning, middle and end so to speak?? sorry just my usual twisted humor

[Kimba22]

Sunshine008,

This is your decision, not your neuros. Ultimately, it's your body, so you need to decide what does/ doesn't go into it and what consequences you are willing to live with. There are no guarantees one way or the other, anyway. Your neuro probably won't be happy, but he/she still must respect you and your wishes. It's just the best they have to offer right now.

Glad to hear you still plan on getting your MRIs and following your disease with a neuro. Very good idea . You can always revisit the idea of a DMD later. If you find this neuro won't respect your wishes, then good riddance, find one that will.

My goal when I was dx was to do whatever I could to keep my disease at bay so I could continue to be there for my then 2 yr. old daughter and 9 yr. old son. I took my Avonex shot on Friday night, knowing my DH or the grandparents could watch the kids over the weekend. Saturdays were yucky for a few months, but my body did adjust to it. I don't regret trying it, even though that medicine didn't help me very much.

Glad to hear you're feeling better. Keep up with your MRIs though, since disease activity can be "silent".

Wishing you well,

[sunshine008]

it's a toss up i know, i was first saying i'll do meds because i have kids. than i said wait no one can watch her if i get sick from med, no family nearby or close friends than how will i do for her... round and round i went.

so it isn't insane to ask him to still be my neuro while i try this route for a little while?? soo new at this.

and in all honesty i fight the ms junk each day, i dont' really have flare ups anymore its' an everyday event for me. so i get up do the yoga that gets me thru the day than i do the same at night or sleep will not happen like tonight. i got aggrivated with my husband tongiht we argued i didnt do yoga so here i lay in pain.

i've always thought it odd that i just have it each day now. it used to be every 4 mos than down to 3 than 2 and than it went into 1 time a mos almost perfectly than got closer at every 2 weeks than i went to everyday. i keep waiting for it to let up yet it doesn't. so i just keep pushing the yoga and eating differently gluten free which during the day keeps me going. nights are my worst. leg pain is like giving birth thru my legs lol.

i'm sorry avonex didn't work for you.

[maximumlite]

Hey Sunshine,
Usually not this blunt but are you out of your mind? Do you really think that the 3 or 4 days that you have looked up the meds on the internet is long enough to quailify as "I thought long and hard" to make a proper decision? I try to respect everyones decision that they make.

I have not been on this site long but it seems like the only one I've read about is SNOOPY who does not use meds and has had a from what I can see is escaping the bullet, if I was SNOOPY I would play the Lotto I pray you take no offense SNOOPY but you are very fortunate and probally are a super strong person that many of us are not.

I also remember someone saying that no one talks about the good experiences they are having only the bad. Take some time to think about these words.

What if I took meds, If only I would of taken the meds, Maybe I would'nt have had the same effects as someone else, Could I have kept walking,Who will be here for me? and so many more I can think of, remember you can not turn back time and what damage is done, is done no do overs.

I'm sure there will be people that will be mad at me for my way of thinking but I asked myself these questions, on the other hand how many people are here in Limbo Land would love to have the oppurtunity to be able to take some of these meds even if they do not have a doctors DX.

I'm not sure how bad your MS is, I have been very lucky with mine and am sure there are people here that would love to be in my place, I've had one real bad flare, to me it was bad but after reading what other people have gone thru and are going thru I will take a chance and take my meds because quite frankly I do not wish to be in the place of many on this board.

My kids are grown up 22-29 and if I had young ones at home I would probally go for the most aggressive there is so I could grow with them not grow feeble with them. Maybe you should go back and read your past posts.

For the ones who don't agree with me go ahead and slap me around, but I feel like I have been offered a second chance at a longer life, a better life with meds, I would put my kids first and chance what the meds would do to me so I can grow old with them especially seeing as I started at 18 being a dad.

[MrsBones]

Yet i noticed since i've been doing my yoga twice a day my last neuro exam i was able to touch my nose, my leg pain has decreased, and my balance is a little better.

Ignoring my opinions on your choice, as they don't matter, I do feel compelled to reply to this.

Regular exercise can combat some symptoms of MS, meds or not. Yoga is a good choice as it's gentle, effective for main areas of concern and less likely to overheat you, than say, aerobics. That's one of the reasons you so frequently see yoga classes organized, sponsored and given by the NMSS. Pilates,too.

The exercise is not doing anything but helping symptoms, it does nothing for the actual disease. If symptom management and general exercise benefits are what you expect from yoga, then great....ignore me.

I just wanted to be absolutely sure that you did realize yoga can be an important part of keeping anyone healthy (being good exercise) and manage some symptoms, but doesn't act in any special way against MS itself.

Please do try to cancel the Avonex,though, if you really don't want to take it. It's a very expensive med, as you know. If you can stop it from being mailed, someone else who needs it can take it. Once it's in the mail, if you don't take it, it's wasted. There's no legal way to give it to someone else or return it. Also, if you change your mind later will they still pay for your Avonex if you cancel now? Will you have to reapply?

IDK if the neuro will drop you. They should respect your choice, but they can choose to not see you just like you can choose not to see them. There are plenty of people who don't use DMDs and see their neuro, but I can't speak for yours.

Hope your treatment choice works out for you.

[KoKo]

Sunshine008

Want to read some more opinions on whether to medicate or not? If so, this is a recent thread on that topic:

http://www.msworld.org/forum/showthread.php?t=110677

Take care,
KoKo

[4giraffes2]

I've been told Hear something 3 x from 3 diff. peeps, it's worth paying attention to.

As gently as possible (gently, yes-lengthy, yes) I need to respond to Sunshine.

Did you know that no one really knows what is being seen on MRIs: the present, the past and/or the future?
As your neurologist.

Following is a bit of my story, offered to share maybe a different perspective for your consideration.

Around the time I was dx'd (1989), Viagra became FDA approved and was available by rx from one's doctor.
At the same time BetaSeron (or whatever it's name was) became available for MS.
This, however, was available by entry in a lottery.
Can you even believe that?!?!?!?

I absolutely refused to be involved. What kind of cr_p was that!! I was gonna figure this thing out, and fix it all by myself.

I got busy reading, talking with and listening to 'specialiats', learning about and incorporating nutrition, acupuncture, psychotherapy, massage therapy, gardening -I was just fine and would stay that way daggomit!

All along the way I become aware of the thing that "helps" MS.

As time went on I learned to ask "Helps. in what way?"

Symptom management is critical, absolutely. Stress mucks everything up so anything to reduce it helps a lot (read Yoga).
While symptom relief is great (a priority for me) it has absolutely nothing to do with the 'condition of multiple sclerosis' which marches merrily on of it's own accord.

I've learned that there are things I can do, eat, feel (for example) that can have me feeling either really good or not so much.

But this thing does progress whether I like it or not.

Despite my tenacity, an emotionally turbulent event kind of forced the issue of my taking injectables.
I started with Avonex. It didn't sit well with me at all so I stopped.
A year or so later I stared Copaxone. That was approx. 7 years ago. Until then I had exacerbations every spring, fall and sometimes in between.
After the first month I was able to enjoy the Spring. It was hard to trust that MS wouldn't flare but it didn't and has remained fairly 'stable' since.

Just one exacerbation in the last 7 years.

I strongly agree with everything Mrs. Bones and Maximumlite said.

A friend with MS keeps talking about 'where's the cure, I want it now.'

Let me just say that if someone handed me a cure right now it would help in that it wouldn't get worse but it would do nothing to get me back all that I've lost.

There's no time to waste. You've got your whole life and your kids.
This thing just isn't kidding around.

Thank heavens, Sunshine, that we have this awesome website.

[Bob698]

Sunshine, I could tell you about what it was like to fight for eight years to get a diagnosis and treatment. I could tell you about what I lost while I was waiting. I could tell you about what MS really is and what its doing to you.
I have a feeling that won't make a difference so instead I'll just pray for you because you're going to need it.

[Kimba22]

Sunshine008,

I didn't realize your symptoms were increasing and are now daily. Sounds to me like the MS is pretty active. When did your symptoms start?

My daughter is 11 now, and she is quite self-sufficient. My son is 19, in college, working, and in his "own" world. My husband "escapes" with work and (imo too much) TV. It has been really hard on all of us, but more so when the kids were younger. My daughter has grown up with a mom with active and progressive MS. As you can see, I've been through the wringer with meds. If my daughter, son, or husband had their choice, they'd rather I was out of commission for a day/ week/ month/year/ whatever, as long as I didn't get worse and maybe even got better. My kids want and expect me to be around for many, many more years. I'm not going to steal that hope from them or myself by refusing DMDs.

Your family will survive, and better to learn a little at a time while you adjust to Avonex, rather than cold turkey if/ when you are totally out of commission and end up in the hospital and rehab unexpectedly for a few months from a flare, come home, and still aren't up to snuff for months after.

Since it doesn't sound like you can cancel the Avonex, I would recommend saving it by storing it in your refrigerator and thinking about it for awhile before you discard it. You can store it for several months there, and the expiration date is on the box. You might just need a little longer to adjust to the idea. Every time you see it there, re access your decision whether or not to try it. You might possibly be one of the lucky ones with very few side effects. It seems foreboding at first, but it gets easier, especially when you remind yourself "why" you are taking a DMD. To hopefully safeguard your tomorrows.

There is no way to go back and undo the damage once it's been done (not yet, maybe someday before I die). Some people stay stable w/o a DMD, some stay stable or slow their progression because of a DMD, and some of us progress, regardless. There is just no way to predict what will happen with your disease course. I don't regret "trying" and I know my kids know I didn't "give-in" or "give-up" without a fight. The only "if" I will ever have, is what "if" I had been dx sooner so I could have started meds sooner .

Ultimately, this is your decision, though. And you need to be compliant if you expect a DMD to work. For me, the hope of slowing down the MS far outweighed the risks of not trying various DMDs. I'd rather die from a cancer brought on by the Cytoxan, than live another 40 years with no QOL, confined to a bed. I don't mean to scare anyone, but those days are unfortunately getting closer for me. A girlfriend of mine is already there . I have another girlfriend who is doing very well (on Avonex with no intentions of ever stopping it) .

There is no crystal ball with MS and your disease course or which, if any, of the DMDs will work for you. Regardless of what you decide about Avonex, keep up with the yoga and any other form of excercise you can tolerate (swim therapy is one of the best for MS). You will lose "it" if you don't use "it". Eating well is good for everyone.

Whatever you do, keep up with your MRIs and visits with a neuro. Even if you decide to try the Avonex, it may not work well for you, and you might have to try another DMD. Remember, the neuros who treat MS will always know someone who is doing worse than you. That's why they recommend their patients go on a DMD, they have seen how bad it can get. Once, when I was at the MS Specialist's office, a bedridden patient was brought in via an ambulance. Then it dawned on me, the busy neuros aren't going to make house calls!

Best wishes in whatever you decide. Just realize, MS and the meds are like russian roulette. You really need to think about all the possibilites.

Wishing you only the best,

[Johooper]

If I was you I would give them a go, who says you will get side effects. I started on Avonex and was on that for 18 months and I NEVER and I mean NEVER had any side effects, never got the flu like symptoms. Never felt sick. Business as usual. I switched to copaxone and took that for 18 months and again apart from some mild bumps and itches and the occasional bruise to it never bothered me two hoots, took me all of 30 seconds to do (I dont pre medicate, heat or cool just load and go no alcho wipe before either). I then had Tysabri for 2 months which did knock me about, had a flare and ended up with shingles so stopped it and have gone back to copaxone. If I had a choice I would prefer Avonex for the convenience of only once a week but it wasn't working for me. Copaxone has been great and kept things at bay. I was a young mum and I thank my luck stars for that every day. I am 41 (dx at 37) and my kids are 21, 20 and 16, but if your kids are still young they need you to be as mobile as possible for as long as possible.

Consider at least giving them a go for 3 months as I hear the side effects diminish.

Jo

[0485c10]

Please do try to cancel the Avonex,though, if you really don't want to take it. It's a very expensive med, as you know. If you can stop it from being mailed, someone else who needs it can take it. Once it's in the mail, if you don't take it, it's wasted. There's no legal way to give it to someone else or return it. Also, if you change your mind later will they still pay for your Avonex if you cancel now? Will you have to reapply?

IDK if the neuro will drop you. They should respect your choice, but they can choose to not see you just like you can choose not to see them.

Mine did that when i refused a med. said he did not want to treat me. its his choice. i was like flip a finger at him and went my own way for 8 months was it?

then my drivers license came up for a normal renewal and i was very visibly unsteady, dl have to be renewed in person in this state and the dmv refused to renew my dl without a physicians signature, a physician legally licensed by the state to practice medicine in the state....

well there was no way i was gonna get a new doc to sign it & the dmv wanted me to physically surrender my dl, hand it over to them. i felt i was gonna get better they just needed to give me some time--but they wanted me to "surrender my dl" that was too painful to do.

so i called the doc office and asked to speak to the nurse, said i had a form i needed the doc to sign & i would drop it off and pick it up after he signed it. i was really trying to avoid seeing him after our last difference of opinion.

i dropped the form off at his office. within a day i got a call from the nurse that the doc would like to see me, that he doesn't sign forms from the dmv outside of the presence of the patient.

so i had an appointment within the week, they were nice about scheduling that.

the doc looked at the form, then looked at me. then wrote on the form "now stable on betaseron" then looked at me straight in the eye and asked me if i wanted him to sign the form?

i have to kind of chuckle at the memory of the situation. that man is good, if he wasn't a doc he could have been a corporate buyer. i think i would like to take him with me to go buy my next car.

well i said YES, I want you to sign it, i want to keep my dl & not have to surrender it.

so he signed it, i kept my dl with restriction for 2-3 years and then the restrictions were removed after i started tysabri.

i started betaseron & the funny thing was I didn't have any side affects from it--although all i had read about the side affects made me refuse it at first---a person never knows how they will react until they try it.

i hear avonnex is tougher for side affects, if the side affects cause a QoL issue for you just switch to a different one.....that point about not being able to get rid of a very expensive unused med after it has been shipped is very real, happened to me when i switched to tysabri, i had a whole unused box of betaseron when i did--if i would have known i would have had to throw out this very expensive box of a med,i would have planned the switch to when i was out of betaseron...

probably it is best to decide how much time you will give avonnex and then after your decision is not affected by unrealized fears-of self injecting,side affects--you will know you are making a rational decision about treating your MS & with what med you will use to treat your MS...now your decision is just based on fear.

the doc's are pretty flexible about which med & you may need a state licensed doc to sign something in the future so don't burn you bridges yet. doc's really do have a choice of which patients they treat as long as its not an acute life threatening situation. if its imminently life threatening they are required by law totreat, but otherwise they are not required to do so.

and they don't have to sign forms at any time that they don't want to.


btw there is more to my story of refusing meds, it can be longer. first i asked to delay starting meds, until i completed a semester at school so the side affects didn't affect my semester. then betaseron was shipped incorrectly without the med and a nurse scheuled to teach me how to self inject with out any meds to self inject--what was i suppose to use tap water? that's when i got to the point of outright refusing. the dmv made me reconsider my decision.

[Sequoia]

Hi Sunshine,

I have to say that MrsBones makes an excellent point about the difference between symptom management and disease modification. Yoga is wonderful stuff, but there's no evidence (that I know of) that it can slow progression. The same is true for many of the supplements people take; there's little to no proof that they do anything more than treat symptoms.

Eliminating gluten may be beneficial for symptom relief, but if you're not going to take a DMD you'll have to take dietary change more seriously than that. There is considerable anecdotal evidence (which is not the same as research studies) that scrupulously following the Best Bet Diet or its American cousin, the MS Recovery Diet, may slow progression. If I were you, I wouldn't even consider going without a DMD unless I was fully committed to following one of these diets.

Mind you, I'm not encouraging you to take the alternative route! IMHO you do need to be on the Avonex. But if you stick to your decision, please understand that you're going to have to fight hard to control your MS, using all the evidence-based tools available to you.

I wish you well whatever path you take.

[rdmc]

I just want to echo what Jo said...you might not get side effects...and you can always stop the med if you want.

I didn't take a med for similar reasons to yours. When I was diagnosed my kid was in his teens, but not old enough to drive, so many mornings I had to drive him to class. Plus my MIL was living with us, and I told the neuro I just couldn't afford to be sick from the meds...but my MS was flaring a lot. so once my son turned 16 and could drive I started on Betaseron, and to my surprise I had no side effects for years, now I tend to get a dull morning after headache which passes quickly.

Has my MS progressed...not significantly on my MRIs, but there has been increased symptoms, mobility and spasticity problems being the most restricting (have a pump now...thankfully.). Was the MS held at bay by the Beta, anyone's guess because the disease and meds are a crap shoot. But the son who I waited to turn 16 and could drive before I started meds is 23 year old man and I was able to dance with him at his wedding.

Would that have happened if I didn't try a DMD...possibly, but if I had progressed rapidly and hadn't tried anything, I know I'd have what ifs. My best advice would be don't make a forever decision, be flexible...don't be afraid to start and don't be afraid to stop any med

[lemstar]

First thing is to find a good neuro who specializes in MS to follow you, and yes, there are docs who will continue to be your doc despite your decision. Mine did...
I am not on meds, but my story is a bit different than yours. I have had MS for 31 years, and was not on any meds for 29 years, until formal diagnosis two years ago. My first "episode" was when I was around 24, 31 years ago. Symptoms eventually remitted mostly, and did not resurface until two years ago. In retrospect, I see many symptoms throughout the years that I just did not recognize.
However, upon diagnosis two years ago, despite my severe injection phobia, I decided to follow standard medical protocol for MS--when RRMS is diagnosed, start CRABs. I, too, have kids (still have one at home), and felt obliged to try the meds. The face of MS has changed dramatically since the introduction of the meds.
The side effects were not awful, and the injections were bareable, but other factors influenced my decision to stop taking meds. (I had a bout of diverticulitis that wouldn't heal, and I suspected immunosuppression might be playing a role; I wound up with a temporary colostomy, and serious surgeries).
My MS specialist has now agreed with my decision to hold off on meds. Since my diagnosis two years ago, as of my last MRI in Sept, there have been no changes. I am having another MRI in July, and if there are still no changes, I will remain off meds. If there are changes, I think I will be doing Copaxone.
My bottom line? If you are young(ish), and just diagnosed, I would try the meds. You can stop if it is too bad for you. You may have no side effects, and it may keeep you out of a wheel chair.
When I was on meds, I thought anyone with MS who wasn't on meds was crazy. My history of 29 years wtihout exacerbations lends credence to the idea of not taking meds, and my neuro agrees....for now.
In any event, as another poster said, you can always change your mind either way.

[SNOOPY]

I have not been on this site long but it seems like the only one I've read about is SNOOPY who does not use meds and has had a from what I can see is escaping the bullet, if I was SNOOPY I would play the Lotto I pray you take no offense SNOOPY but you are very fortunate and probally are a super strong person that many of us are not.

Hello maximumlite,

Such a nice complement...thank you

I take no offense at anything you wrote

I feel it's important to understand that MS is a progressive disease regardless of what any of us do...you can do everything the Neurologist, Physical Therapists, ect tell you and you still have the possibility of progression.

I have not escaped the bullet . This disease can change at anytime for any of us, that's why MS is called unpredictable.

I feel very fortunate in many ways but this disease is not one of them. I will, however, agree that I am a strong person

Just to let you know maximumlite, those of us on MSWorld do not believe in slapping people around. However, in the past, duct tape was used quite often

sunshine008, as usual, I agree with MrsBones on many of her points.

Exercise, in any form has benefits but it does not slow disease activity. Exercise can help in many ways --- for myself, exercise has helped improve my mobility and what I believe has kept me walking for as long as I have. It has been helpful for spasticity, pain and a general feeling of well being.