Kicking Effexor (venlafaxine) to the curb

ReneeinOH

How have others who have been on this drug been able to get off it?

I am stopping ovarian suppression, which means I won't be dealing with hot flashes from chemical menopause, and thus won't need Effexor. This drug was very helpful to me (well, that and Ambien)--I was a wreck because I was so sleep-deprived (for months). But it is so physically addicting (that is, I don't crave it, but my body certainly knows when I have missed a dose), I want to be done with it as soon as possible.

Please share any experiences--on the drug, getting off the drug, etc. Thanks! Renee

wintersocks

Renee,

I have been on Venlafaxine, non stop since 2009, which was pre my bc dx. I do not want to come off it and neither does my GP want me to. I think I would be bonkers without it! I admit I need a chemical cosh as I think I am just too fragile without it. I still am at the hospital every other week...

I had an oophrectomy (Ovaries removed) 2013 (I think) so many hospital appointment.surgeries that I forget. I was hoping that the flashes would decrease following that, but no they are the same.

If I do not take the Ven (we don't call it Effexor here) Like you I notice it! My mood gets low and the hot flashes increase. I am glad I can take it and the biggest problem for me is it is just so bitter and the taste stays for ages. My GP won't rx the more easily swallow one because of the expense - apparently.

Are you just concerned about addiction to it?

vlnrph

As a pharmacist, let me assure you that venlaxafine (Effexor is the brand name) is NOT "addicting"! It is not a controlled substance like narcotic pain pills, anti-anxiety or sleep medications.

That being said, you must taper prior to stopping. Don't go off suddenly or 'cold turkey': have the prescriber devise a plan for you so it can be discontinued in a safe manner.

When you miss a dose, the brain chemicals norepinephrine & serotonin begin to trend out of balance. That's why you notice a physical effect. However, long term use is fine for those who need it.

ReneeinOH

I have gained 25 pounds since I went on these drugs, I have constant mild constipation (no matter what my diet), and given that the reason I was on it was to control hot flashes, I no longer have a reason to take it. From what I have read, getting off it is really difficult, which makes me want off it even more. Before BC, I didn't take any drugs, and while I will still be taking tamoxifen, I'd like to get off drugs as much as possible.

vlnrph

An excellent goal, just be careful. Love your purple hair avatar/wig & mask by the way...

I have a theory about weight gain after menopause or losing our ovarian estrogen production. Our bodies crave it so much, they hang onto every ounce of fat already present and create additional storage areas in order to maximize the substrate where aromatase enzyme action can take place to produce our favorite female hormone.

So, it may not be the drugs alone tipping the scale and making it hard to lose those extra pounds, even with diet & exercise. That thought is depressing enough to put some of us back on psych meds (just kidding!)

ReneeinOH

PatRN10

I weaned off last summer (before BC dx) very slowly just to see how I would feel as I had been on it for a few years. If I forgot a dose during the wean , I was miserable. I stayed off for about 6 months, saw no difference in weight but my mood was worse and hot flashes came back. My family recommended I "revisit" taking it again. LOL. I am back on now and feel much better. Wean very slowly and you should be fine.

glennie19

Vin, I love your theory on weight gain. It makes total sense to me.

Renee:  I'm also a pharmacist and agree with Vin.  Wean slowly. It may take a few weeks to get off of it, but you can do it. My ex-hubby was on it, and everytime he missed a dose, he felt ill, like he was getting the flu.  His body knew that he had missed a dose. Have you asked your doctor for a taper schedule?  I would start there.

ReneeinOH

The way my oncologist has handled everything is to do one thing at a time, which for me right now is adjusting to being off Zoladex (ovarian suppression) shots. I am researching the 'net to see how others have gotten off the medication; a taper schedule seems to be how many approach this, but it is concerning that even after getting to the lowest dose (37.5 mg), people still have horrendous side effects. Some discussion is out there about bridging with Prozac, and use of supplements such as fish oil and B vitamins to lessen the effects from coming off it.

glennie19

are you on the XR capsule now? 

ReneeinOH

Yes.

glennie19

ok, when you get down to the 37.5 mg cap, here's what one of my friends did. She just could not get off of it.  Everyday, she would open the capsule and take out a few pellets. Everyday, she took out a few more pellets. She kept track. 10, today, 12, the next day, then 14, etc etc.   That is one thing you could do.  I am not necessarily recommending it, but that's what my friend did and it worked for her.

Alternate:  there are 25mg tablets,, they are not time-released however. You could get an RX for that, try half a tab in the AM and PM,, and then 1/4 tab in the AM & PM,, and then just 1/4 tab in the AM,, until you can taper off. 

And YOU might not have trouble weaning. Not everyone does.  This are just  worst-case options.

ReneeinOH

Yeah, that is what I had read has worked for others too.

PatRN10

I also opened my capsules to wean as well. The wean took me about 2 months. I went very slowly.

AmyfromMI

Hi Renee,

I believe that stopping ovarian suppression does not necessarily mean your hot flashes will stop unless you are post menopausal. Especially if you are going to continue with tamoxifen. Please someone correct me if I'm wrong. I've never done OS but am on tamoxifen and I never had hot flashes until starting it. That's one of the SEs for me. Talk with your onc to verify or maybe someone will jump in....

wintersocks

AmyfromMI

As I said previously, having had an oophrectomy (post Men ovary removal), I still have horrible and frequent hot flushes. I am on Letrozole, so I cannot comment on Tamoxifen. Being on Venlafaxine certainly reduces them a little but it does not stop them,

Post menopausal does not mean hot flashes will stop, for some women they do for many they continue. Unfortunately, I am one of them!

ReneeinOH

I guess I am assuming my hot flashes will not be as severe now that I am off OS. Given my experience missing a shot and having breakthrough bleeding, I guess I am also assuming my period will eventually return. I would like to get off Effexor and see if I can get my weight down, and get my brain back. So many times I struggle with putting two sentences together--it is taking a toll with my work, in particular. I understand that all of this may not disappear because I will still be on tamoxifen, but given how Effexor works, and the side effects experienced by so many on it, I need to get off this drug and see if I can get my weight down, my brain back, and something I haven't mentioned up to this point -- and be able to orgasm again!

AmyfromMI

Wow! Wintersocks, I had no idea hot flashes could continue after menopause. Hopefully, I'll be one of the lucky ones. Sigh...

ReneeinOH

Is there an "after" menopause?

glennie19

One of my friends continue to have hot flashes 8 years post natural menopause.  **sigh**

sas-schatzi

Old stat..approximately ten percent of woman will continue to experience hot flashes permanently. Lol, maybe it was one percent. Memory issues.  

Cowgirl13

Ladies, you must be very careful about stopping. Get a schedule from your physician. I think it may be that it just takes quite a while to taper off...not that its terrible to get off of...only terrible if you do not have a taper schedule and some sensitive people will need a longer taper schedule.

ReneeinOH

I don't know about that Cowgirl. I have been doing a lot of research, and it seems there are a lot of folks (men and women) who taper down, but still deal with nasty withdrawal once they are completely off.

sas-schatzi

Reneee that's because they didn't taper long enough. Folks that describe counting beads can be an effective approach. Successful for many. The switching to Prozac can be an effective approach. With Prozac, it is available in much smaller doses. For example, getting down to the 37.5(25) mg dose and then tapering on lower doses of Prozac for many weeks.

The approach should be months versus weeks.

Dh was on Zoloft 50 mg. His MO told him to stop it. I said no way he had to taper. Even 10 mg per week was too fast. He was adamant that his doc knew best, not his brilliant wife. He couldn't be convinced that he was an oncologist and Zoloft was not in his repertoire(scope). He weaned in 8 days with me fighting him the whole time. I was furious. Within 24 hours of last dose he developed total numbness, but no other signs of Serotonin Syndrome. I mention that b/c glennies and vllnrp's eyes are going to go wide.

The neuro testing showed that he might likely get feeling back in his muscles, but that he would never get feeling back in his skin. MO tried to blame chemo. Last dose was six weeks earlier. No untoward response since last dose. The change came 24( <36hrs?) hours after last dose of Zoloft.

Dh had lymphoma dx'd 3 months after my BC. He passed in 2010. On the day he died, he said "I can see myself petting Schatzi, but I can't feel anything."

Messing with brain chemistry is not done without consequence. If you have control, always take the long haul weaning process.

ReneeinOH

Have you weaned off Effexor sas-schatzi?

sas-schatzi

Nope, I don't respect the drug. Never did. I'm an old nurse. Worked on the Hot Flash Forum in the first 25 pages with kayb. Further convinced me the drug was trouble. I'm biased. Way Biased. I think word got out in the doc community that biased them that Effexor was the best drug for hot flashes.

sas-schatzi

I've weaned off several other drugs. Fentanyl, Savella, Valium, Ativan, Ultram. oxy. At this moment Life is GOOD

Only drug before BC was Valium. It was used for neck and TMJ. Still is.

glennie19

Renee, when are you going to start the taper?  Will be here to be supportive. 

Mascarecrow

Took me about three months to get rid of it if memory serves. Its been a while so I don't remember the dose I was on other than the reference at some point to it being the max clinical dose and we'll have to try something else if this continues to not work. I took it for depression in like 1995.

Basically I halfed the dose weekly till I was taking just a sliver of a pill. I think once or twice it wasn't a true 'halfing' and I had to add a little back to keep from feeling it. At the end, when I started to get the vertigo I'd take a sliver and when I finally decided I couldn't put it off any more and I was taking as little as I possibly could I planned a weekend of staying at home and knowing it would suck and then just stopped taking it. After about 24 hours I could walk without assistance and at about 48 as long as I didn't move too terribly fast the world stopped with me and at about 72 hours seems to me it was pretty much gone and I was done with it. Effects for me were basically horrid vertigo and I think there was some 'car sick' type nausea from the world spinning so much. Sometimes my head would "buzz" and feel like I'd taken a hit of lightening or an electrical shock that would arch around and turn the vertigo into a turbo spin. Low grade flu symptoms minus the fever but I mostly remember the vertigo and not really anything about physical pain. Hind sight being what it is, I bet if I'd taken something to sleep through the worst of the first 24 hours it would have felt smoother, and if your on a twice daily I'd take the am dose, skip the pm dose and then sleep thru as much of the start of it as you can. I've been thru worse but kicking that stuff is most certainly on my list of unpleasant life experiences.

Personal side rant: I call 'bullshit' on the industry's instance that its not addictive. Being addicted to something is not necessarily a bad thing and something that you *need* in order to feel normal is an addiction... Just cause the word is assumed to be bad by the general public does not necessarily mean its a bad thing. lol /end rant.

Keep us posted on how your doing getting off of it and how you end up doing it. You'll be in my thoughts.

Smile and maintain eye contact!

ReneeinOH

Mascarecrow, thank you for sharing your experience. I know when I have missed a dose, I have had similar reaction as you, and the more I have read others' experience on this drug, I realize that those things are attributable to, and likely caused by, Effexor. Our brain certainly had become dependent on it. In researching this, it has to do with the short half-life of it in our system:

"Effexor for some reason seems to have an incidence of withdrawal symptoms, and severity of withdrawal symptoms, that is more severe than would be expected from its moderate serum half-life. The reason for this is unclear, but it is postulated to be related to the reuptake inhibition of both serotonin and norepinephrine as opposed to the primarily serotonin reuptake inhibition of most of the other SSRIs. This dual receptor inhibition seems to allow Effexor to be effective as an antidepressant for many patients who fail to respond to single reuptake inhibition drugs, but the dual reuptake inhibition may be also in part to blame for the higher incidence and severity of Effexor withdrawal symptoms." effexorwithdrawal.com

I've come across many suggestions on how to weather coming off Effexor, in addition to tapering. "Bridging" with Prozac, hydration, taking Ambien for sleep, taking Dramamine for nausea; fish oil, magnesium, B vitamins to help the brain recover/deal with the absence of Effexor.

I guess I am shocked to have been put on a drug that is so hard to get off of. It did its trick with me--really mitigated the hot flashes--but this is a big price to pay. I was not using it as an antidepressant, so I am curious if that may make it easier to get off this drug, or if I messed up my brain chemistry in such a way that it will take a long time to recover. What I do know is that the effects of this drug has not been studied enough (to my satisfaction at least), and thus, there is no official protocol to get off the drug. So I've seen people advised by their dr. to go cold turkey, and that it was all in their heads if the symptoms did not subside within a couple of weeks; others told to take their med every other day, which is not tapering, and so on. Yikes!

Given what would work best for me in my life I decided to go cold turkey, and this is day 4 for me. This is a good time of year for me to take off work and/or be less productive at work (my late fall and winter is my busiest work time), and I have a supportive work and staff.

glennie19

Mascarecrow:  there is a difference between "addiction" and physical dependence.  Most people use the word addiction incorrectly.  You did not crave the Effexor, you were not mentally hooked on it,,, your body had become physically dependent on it. That physical dependence happens with a lot of drugs and Effexor is not the only drug out there that will cause physical symptoms when it is stopped.   Glad you were able to get off of it. I've heard many stories of how difficult it is for some people, but many doctors are not aware of the problem. (even when the pharmacist calls and says,, hey, don't you think you should taper the patient off of this drug?)

 

Renee: you stopped the Effexor cold turkey?  It's been 4 days?  How are you feeling?