giving up

[opie74]

Do any of you ever just think of dumping ALL the meds and doctors out the window? I know that I can't,  but there age days that I truly consider it.

[opie74]

I have been on Gilenya for 3.5 years. I have had a dramatic drop in the number or relapses. I am almost 40 and my medicine sorter looks like that of a 90 year old man. :-).  That's ok. I sometimes feel guilty about the expense and how it affects my children. The meds also mess with sleep and irratability.  
I usually am positive and upbeat. This week I found out that I have GAVE.  It is not actively bleeding so no treatment is needed. However, I did pause at the "not one more thing" funky mode for a few days. I am back to normal ( as normal as I will ever be).

[Lulu54]

Opie, it's fun to indulge in that fantasy, isn't it.  I'm glad you realize that taking these drugs are you best bet.  I would disagree that they are toxic - the DMDs are not poisoning us.  There are plenty of stories out there that want to tell us how bad these drugs are, but for now they are the best shot we have at slowing or halting the MS.

True, they don't cure us or often even stop the disease but if it slows the number of relapses or the severity, it's worth it to me to stick with my treatment.  I will take all the help I can gather to fight this one.

hugs, Laura

[BOK2Bjan]

Definitely! And I often have. When first DX with Systemic Sclerosis, I was put on methotrexate. I took it quite a while and went into menopause and lost half my hair. Didn't help the disease much so I quit.

When DX with MS, I tried Copaxone for quite a while but couldn't handle the side effects. Then tried the stronger stuff but couldn't handle that either. I had severe local reactions. And I mean extremely severe.

I've been on just Nexium, thyroid, and antispasmodics as well as pain meds for years. From everything I've researched, which is a lot, the ultimate outcome is not changed by the meds. It can reduce flairs but not your ultimate debility. So I figured it didn't really matter. The drugs are toxic and the end result has not been found to be altered in study after study. I don't think its worth it for me(due to the severity of my reactions to the meds).

Of course that's my opinion but the research is real and you can back it up through your own research. If you're suffering terribly from multiple flairs that are worse than the meds - then take them. But if not, there's really no point.

Now I'm withdrawing from the narcotics which is tough but essential. They don't help anymore and I'm not going to increase my dose so...

For those weighing the pros and con's, just remember that everyone is different but that the research shows that although the DMARDS can reduce the # of flairs - the disease marches on anyway and your ultimate disability is what its going to be. Some have very minor disability and others major. It hasn't been found to correlate with the use of meds (at this time).

Please listen to your doctor but also do your own research and weigh the cost/benefit ratio. Blessings to you all.

[HVAC]

When you have a chronic illness wanting to give up on treatment is normal. No one wants to have an illness they have to treat all the time.

Alex

[SarahL2491]

Opie, I think I reach this point about once a year!  Nice I am not alone!

[kwarendorf]

I surely have days when I'd really rather not deal with MS. Given its constant presence, it would be nice for it to take a vacation, Hawaii maybe. But it doesn't so I can't.

My fedupness is usually pointed at the disease, ratgher than my med regimine.

Kyle

[opie74]

It has been 6.5 years for me.  I did get off of meds in order go have a baby.  It was 12 months total.  In that time I had enough solumedrol to kill an elephant.

[MelissaW33]

When I was first diagnosed 10 years ago, I faithfully took all meds prescribed by my Neuro, including Copaxone daily, I did that for 2 years straight, then I did just that dumped the meds.
In 2009 I had a follow up MRI, showed lesions but Neuro said I was stable.

I ended up getting pregnant, having a baby, breastfeeding etc. So continued to stay off all meds and shots.

2 weeks ago I had a MRI since it's been 5 years. I contacted the Neuro office for the results. My ARNP that I see is on vacation for 2 weeks so hasnt had a chance to review my results but the lady told me it did show New MS activity and I should be back on Copaxone.

Time for me to get out of denial and start taking the meds again. It was nice to ignore the disease all those years and feel somewhat normal, but now I'm left wondering what damage I've allowed by not taking my meds.