Anyone else stop meds?

[msdoesntruleme]

Okay, so I have to ask...Does anyone else here admit to stopping their meds because they really aren't sure if they are working, or if the benefits are worth the pain?

I was dx'd 3 1/2 yrs ago. I was put on Copaxone, but after a year and a half, I found that started missing doses. Then I just quit altogether. I have been a bad girl, and have not taken my meds in almost two years. I have not had a flair since April of 2007, shortly after I was dxd, and my MRI's show they are stable, not changes.

So, I am frustrated that my doc harps on me continuing to take my meds, when nothing has changed, and taking the meds, makes me sore and lumpy, as well as breaking the bank every time I have them filled.

[poohb3ar]

bad girl? it's your body and your decision. your doctor can recommend and advise, but should respect your decision.

i faithfully took 1st avonex for about 5 yrs then copaxone for 2 something. after hitting medicare donut hole for the 2nd time at $4000, had to stop taking them in may. it was pay taxes or buy meds! dr. couldn't argue with that. did get the lecture that 'we don't know for sure if you'd be doing worse if you'd not been taking them, blah, blah' but for those 8 or so yrs. i'd averaged relapse every 9 mos. don't see much benefit in that!
the 2 last year resulted in total paralysis that put me in a wc for over 3 months and the other shrunk my vocal chords and deadened my skin even more. had surgery this spring to restore my voice (but not totally)
so i don't feel at all like a 'bad girl' for going off meds.
MS is such a strange disease that NOONE can say for sure what helps and what doesn't
it's your body, and only you know what works best for you. it's your decision that you've got to live with.
i pray that you find what helps you best.
take care and God bless you!

[knuckle]

I don't take the meds anymore, though over the past 12 years I pretty much took them all (Avonex, Rebif, Copaxone, Novantrone, Tysabri). For me at least, they didn't help much and I still developed what appears to be lasting damage to my spinal cord.

Alot of people will say this or that drug is working great for them, or they have a great neuro, etc., but the reality is you will not know for sure how effective these drugs are, for you, until you have lived with the disease for over a decade. If you asked me if I thought Avonex was working during the first three years I would have said yes, but I think the nature of the disease obscured the truth.

The reality is, for most of us, that MS comes and goes in the early years. The reality is, the MS drugs were tested for only two years, on a disease that comes and goes, and found to be only 1/3 effective. The reality is, at ten years there is no meaningful data on efficacy, and what little there is suspect to pharma marketing.

Finally, the assumption for which all the MS drugs have been developed is immune-suppression (with the exception of Copaxone). This assumption is now over two decades old and open to criticism. However, the market for MS immuno-suppressant drugs is over $10 billion a year and nobody wants to upset the golden goose. Just keep taking your meds and paying your insurance premiums.

I currently take Low Dose Naltrexone (LDN) for my MS under prescription from my neuro. He agrees it may be just as effective, maybe more effective, than other DMD treatments. The bar for efficacy is only 33% at two years. Someday maybe there will be a double-blind, placebo-controlled, clinical trial for LDN, but I won't hold my breath. The user experiences are good enough for me.

I also take 10,000iu vitamin D daily and Alpha Lipoic Acid (ALA) and Curcumin. Like LDN, vitamin D helps regulate the immune system. ALA inhibits t-cell migration across the blood-brain barrier (like Tysabri). Curcumin has been shown to halt and reverse MS in the mouse model and is a colon and melanoma anti-cancer agent. All told, I spend about $50 a month on my MS and seem to be doing at least as well as when I was taking the expensive DMDs.

So, in my opinion, I don't think anyone here can give you legitimate advice that the established meds "are worth the pain" unless they have taken them for over a decade. For me they were a waste of time and money.

I think immuno-suppressant DMDs only mask the underlying problem, which is an immune system out-of-balance. If I was to go back to when I was first diagnosed, I would try to correct this problem by the least toxic therapy first, LDN and vitamin D. See how you do for 6-9 months and see how you feel.

www.LDNaware.org

[onlyairfare]

I stopped Copaxone a couple years ago mainly because of the expense - my insurance required a co-pay of 25% of the list price of the drug, which was $800 per month or $9,600 per year. I decided it wasn't worth it.

Happily, I recently got a new neurologist, an MS specialist, and he ordered a new MRI, first one I had in over 2 years, and it showed no changes since the last one, and for that matter no changes since the first MRI n 2002. He said he does not think I need to take DMD's! I was surprised to hear a neurologist say that, as every other one I have had has pushed meds, with the usual "who knows what would have happened...?"

The reality is, I've obviously had MS since the mid-1970's and my attacks had been very infrequent since the 1990's, save for the one in 2002 that prompted the "official" diagnosis. It would be difficult to show that any medication lessened relapses under those circumstances. I still don't think it's worth the trouble and expense, so for now, I am skipping the DMD's and putting the last kid through college with the money saved. Also working a little less and traveling and having fun a bit more, while I still can.

[BrendaG]

I've wondered about stopping the meds just because it seems that MS has a mind of it's own with or without meds.
My doctor seems to understand the financial aspect and lets
me make my decisions and works with me on issues I might have rather than lecture me.

[lchoppel]

I would be too afraid to stop my DMD, so no I have not intentionally stopped taking that medication. I've been on Copaxone, Avonex and now am taking Tysabri. I have however stopped taking other meds, such as pain pills to see if they really are as effective as they should be. And I learned that I will never stop those meds again!

[webbles 989898]

I was dxd 11 years ago and about 4 years I stopped betaseron. Just started again a few months ago because I am starting to have some problems. I still don't know if they work or not but I will try to be a pin coushion again for awhile. For me, yes it is very hard to stick myself every other day when I do not know if they are doing any good.

[skeptic]

re: anyone else stopped meds

Good to see this message - I was beginning to feel like the only person who stopped taking the MS drugs. Over the past 8 years I have taken them all and every one of them gave me terrible side effects. I started with Avonex and I took that for two years despite the horrible headache that I got about six hours after every shot. I kept hoping all the side effects would go away with time. I lost a day and a half every time I took it but I kept on because I thought it was good for me. Next came Copaxone and I got a horrible painful welt every time I took the shot. That misery lasted 6 months till I quit.The shot area pain lasted for days. Next it was Rebif - I could barely walk with that one. Tysabri was next - but then were two cases of PML and I did not want to run that risk. Then Betaseron - pain every time about 4 hours after the shot. My neuro is not happy but he's run out of drugs that I am willing to try based on my track record of getting side effects. I have no idea if the drugs did what they were supposed to do - slow disability, etc but the side effects I was getting were more than I could tolerate. There were times that a friend with MS that was not on the DMT drugs felt better than I did. I went from using nothing to using a roller walker in 8 years. I use a wheelchair for things that require a lot of walking because I just can't do it. I'll never know if my lot in life is my MS or if I would have been better off not using the DMTs. There are no answers to my questions - I just know I felt miserable on all the DMTs.

[heartsandskulls]

I stopped taking the DMD and some other drugs because I was tired of the cost and not feeling any better.

Who wants to have the flu every day? Whenever you feel better you have to give yourself a painful injection and start the whole process over. I lost months of my life just being sick.

Now all I'm trying to do is get my pain management under control so I can walk like a petite 30 year old woman and not an 80 year old.

I had to go to the ER on Saturday due to a relapse, I average one to two every 6-9 months. They were shocked of course when I said I wasn't taking a DMD but I think that people who don't have to deal with this every day will never know about the choices that we have to make. In some ways it's short sighted of me but I believe in informed consent and if I choose to live out the next few years of my life AWAKE (as opposed to sedated from various anti depressant based pain meds), without the flu and side effects from DMD, and all the other issues that we face, at least we're lucky enough to be able to make those decisions.

[rubberlegs]

I know of lot of people who stop their meds, and not all of them have MS, it's a personal decision.

The worst thing I have seem happen is when a friend stoped taking their meds for a mental disorder and nearly was killed and than instutited. But that was their personal decision and they repeated it many times. I dont feel any need to judge.

Some I know have quit taking life saving meds when they are ready to pass.

The MS dmd's dont work like an antiacd or antiflamitory and I dont know of anyone who has quick or instant relief from MS symtomes from taking the expenscive stuff.

I think most of us MS'ers would agree the shoots are not a fun adventure, But we take them in hopes our MS stays at bay.

and now we also have a non shoot dmd! good on that!

[Jake4]

Exactly what I was looking for ....

This morning I said to myself, self, lets see what others have to say about stopping the madness.

I was dx late 90's and started copaxone for a couple of years, HATED the shots, so much that i stopped untill recently about 6 months ago after listening to my neuro and PCP harping on me about going back on them, mind you, i have had numerous MRI's and not once have they showed any active, or new lesions. I have a pretty big lesion in my cervical spine from c3-c6 and some "spots" on my empty brain. Pain is a big problem for me, weakness in my legs, numbness arms, legs ect, all stuff i have learned to live with since being dx, BUT all have gotten worse since i started back on copaxone. My neuro even is having me tested for a disease that it worse than MS if you can believe that one, when she brought up this other disease her comment was..."maybe we can stop the copaxone', which led me to think, even she doesn't know about these meds. I have two small girls and its one of the main if not only reason i went back on them ,because of the guilt that if something happened i would feel guilty for depriving them of the Daddy they know...if that makes any sense, these are very very expensive and oddly, i feel like im wasting the insurance companies money....im rambling and will probably wait ti ll my next appt before i stop. But I am in agreement, who really knows if any of them work, about 10 years with out them and i was not any worse for the wear, since i started again, i feel worse.......

[rieshl]

I have been contemplating going off my drug (Avonex) for the last month or so. After reading about the study in Britain (Boggild et al 2009) that compared 3000 MS patients who had started receiving CRAB drugs in 2002 versus the established natural progression of untreated patients. The findings noted that there was not a statistically significantly difference between the two groups. That's when I first questioning my meds. I was first put on Tysabri, but then pulled off for 6 months, then when I returned for a follow up visit with my neuro, he change his mind and put me on Avonex. I have not noticed any changes for the better, but I now get burning sensations (like they are on fire) in my legs from time to time. I see my doctor next week for a check up, and I was debating about discussing going off the drugs with her. Reading all these posts I think I will. I am also on a wait list to see if my veins are blocked. Anybody else contemplating the angioplasty? Sorry for going on and on. Thanks in advance for your replies.

[tellnhelen]

I quit Avonex

I really did not feel that Avonex had "slowed" anything. In fact I felt very betrayed by the drug after taking it for 10 years. I had a major flare in 3/09 from which I'm still fighting to recover. Lost my balance, strength and stamina, feeling in my fingertips and more. Started LDN in 10/09 but have since lost confidence in that too. Will start tysabri ithis month because I feeling desparate to "slow" the progression. I really want to at least regain some balance...Just let me have a few more reasonably good years.

[Sandi721]

I was on Tysabri for 30 treatments. In October of last year I was diagnosed with breast cancer and of course had to stop that immediately. Suprisingly, 2 more people from my Tysabri group were diagosed with breast cancer. I wonder many times if Tysabri contributed to my breast cancer.

[MyGirlsMom]

My DMDs are for my family...my DH and DDs!

I was dxd in 2009 and started immediately (three weeks later) on Copaxone. I too go through periods wondering if the meds are working, what if I stopped, what if I shot every other day. The other week ago I had my first bout of ON. And now, I am not thinking about stopping at all! LOL!!

I am in my late 40s with two young daughters both in elementary school. I do the shots for them...the chance that it will help mitigate the risks of this disease so I will have the best opportunities to actively raise my daughters with my husband. If my DH and I didn't have kids, my (our) decision would perhaps be different. Everyone has to find their own path in managing MS.....

During this past year since DX, I have been working on living in the present....be present each day, the best I can to be a good wife, mother and employee. I just keep trying...and I keeping hoping and praying the Copaxone is working!