Want to STOP all meds!

[catmama]

Hi all,
Been lurking and posting since 2006. Been thru the DMDs and have been taking Gilenya for over 2 years. I have primary progressive with relapsing tendencies, and, yes I know that there is no proof that Gilenya has not been proven for anything other than RRMS. I think I am just so fed up with everything, meds and doc wise.

I have had a chronic headache, low heart rate, gi distress and several other side effects related to Gilenya, and I continue to progress. My neuro just continues to prescribe more meds to combat those side effects, well, you get the gist, right?

I also take a double dose of Prozac daily and suffer the side effects presented from that also, all the while my depression seems to be worsening. Now we have added Abilify to improve the prozac. And now I have more side effects to deal with.

I am 50 years old, and really have no one to be accountable to, and no desire to live til' I'm 80. I've been trying to follow a "clean" diet, exercise regularly, and give up smoking. Realistically, I feel just a crappy as I did before I started all of this a year ago.

So here's my thoughts, stop all the meds except the synthroid and Vitamin D, eat what I want within reason, puff a cigarette now and then, still exercise to my ability and just go out "AND ENJOY THE LIFE I HAVE LEFT" without all of this other BS. Get on my harley and just gooooooooo!!!!

What do you think?

[tommylee]

Hi all,
Been lurking and posting since 2006. Been thru the DMDs and have been taking Gilenya for over 2 years. I have primary progressive with relapsing tendencies, and, yes I know that there is no proof that Gilenya has not been proven for anything other than RRMS. I think I am just so fed up with everything, meds and doc wise.

I have had a chronic headache, low heart rate, gi distress and several other side effects related to Gilenya, and I continue to progress. My neuro just continues to prescribe more meds to combat those side effects, well, you get the gist, right?

I also take a double dose of Prozac daily and suffer the side effects presented from that also, all the while my depression seems to be worsening. Now we have added Abilify to improve the prozac. And now I have more side effects to deal with.

I am 50 years old, and really have no one to be accountable to, and no desire to live til' I'm 80. I've been trying to follow a "clean" diet, exercise regularly, and give up smoking. Realistically, I feel just a crappy as I did before I started all of this a year ago.

So here's my thoughts, stop all the meds except the synthroid and Vitamin D, eat what I want within reason, puff a cigarette now and then, still exercise to my ability and just go out "AND ENJOY THE LIFE I HAVE LEFT" without all of this other BS. Get on my harley and just gooooooooo!!!!

What do you think?

I think you should dump the meds but keep the healthy lifestyle for three months first.
The meds may be making you feel lame.

If you still don't feel any better after three months... Party like a rock star! or have a smoke or whatever makes you feel better.

I am a 49 yo man. Been on a clean diet/exercise plan for years only because it helps.
I take almost no meds...but I use mmj daily.

[Zuzus11z]

I'm inclined to agree with tommylee.

I'm PPMS. I gave up tobacco and booze once Dx. Modified my diet. Take LDN and a buttload of cool supplements and vitamins. I feel fine and hoping to stay that way. I may revisit mmj fs symptoms warrant. We'll see.

Good luck to you.

[SNOOPY]

Hi catmama,

So here's my thoughts, stop all the meds except the synthroid and Vitamin D, eat what I want within reason, puff a cigarette now and then, still exercise to my ability and just go out "AND ENJOY THE LIFE I HAVE LEFT" without all of this other BS. Get on my harley and just gooooooooo!!!!

What do you think?

Sounds good to me minus cigarettes simply for health reason which go beyond MS.

If you don't want to do medications that is your choice. You can always restart treatment again if you so choose.

Take time to think about what you want and what you feel is best for you and your health.

Take care.

[misslux]

I think if the DMDs aren't useful, then ditch them.

I will say, try a different anti-depressent before you ditch those completely. There are many newer meds that are better than Prozac.

I agree with the others to do what you can to stay healthy. Honestly, it probably isn't going to stop progression if that is what your MS wants to do, but it WILL help to prevent other issues which make life a lot harder for those with MS.

[Fed Up]

Please do not just stop your medications, some need to be weaned off, of. To prevent a serious depression with. I'd ask your doc to help you stop taking those pills and reduce the dose.

The anti-depressants (SSRI's) will dull the high effect of mmj and I personally DID use medical marijuana to get off many of the same medications. It takes time tempered with caution, to avoid any effects of withdrawal.

By your post, it is obvious you are depressed. I used mmj to stop my meds and it seemed like it was almost a crime, to feel so good.

IDK about the Gilenya and I'd definitely ask your doc. If you are in a legal mmj state, maybe go to a mmj doc and have him help you get off those meds.

Regardless, the fact you seem to want off is a good reason to get off and wait. Then restart on something else, if nothing is working.

Definitely worth a discussion with your doc.
http://www.msworld.org/forum/showthr...=126585&page=8

Good luck to you and I sure hope you are able to quit those meds. I was 55 when I got off so many prescription meds.
fed

[BigA]

Yes, wean yourself off with a friendly doc. But quit the smoking. I saw a guy who wasn't doing well for years do a lot better after losing weight, hitting the gym and lifting weights.

Smoking is the anti-med, somehow it's been shown to worsen your MS, so it's a very expensive addiction. Try to quit, even changing to a vape pen will be better.

Good luck

[catmama]

Thanks for the suggestions!

It took me a minute to figure out was mmj was/is, duh! I have researched prozac discontinutation, it has a half-life of 5 to 6 weeks, and is used quite frequently to wean off of other SSRIs, several sites state that there should be no problems with worsening depression if it is stopped cold turkey with no weaning/tapering plan. Still plan to run it past my doc though.

As far as the e-cigs to replace the real thing, I have recently stocked up on some of those, but I have found that using one kind of makes me really crave a full blown cigarette. So I shall see, maybe give the Chantix another try.

I'm just feeling very frustrated with all of the drugs and their side-effects, and of course, tired of feeling, "sick and tired."

I am definitely considering stopping most of the meds, especially Gilenya, but won't make any drastic decisions w/o discussing it with my neuro.

Keep the suggestions coming!
Thanks, Cat

[Katje]

I have been invited to go to Chicago for a stem cell transplant. No more MS. You should look in to it. It's very hard to get in, but if you stil have inflammation and RRMS They will consider you.

It's not an easy treatment, however well worth being MS free.

I am going to take Tecfidera until I go to CHicago which is a month or two away, just waiting for my number to come up.