I just wrapped up 41 weeks of treatment (VX prove 1 participant) and I was on lexapro (which didn't work) and then effexor. I didn't think the effexor worked really either, it certainly wasn't all rainbows and chirping birds anyway. But as I tried to withdraw from the effexor I dropped down from 2 pills a day to 1 pill a day for 10 days, and then 1 pill a day for 10 days, and then 1 pill every other day for 7 days, and then 1 pill every 3 days for 7 days, and then finally 1 pill every 4 days. I thought for sure that would be a good long taper and my side effects after stopping should be next to nothing. I was wrong. I experienced everything you mention above, plus this weird "helium head" lightheadeness thing. It was so bad I actually started taking it again, except this time I broke the pills in half and took 1/2 pill every 4 days for maybe another 12 days. I definitely felt better after going back on it, even only with 1/2 pill every 4 days (37.5mg pills, btw). But then I ran out of pills, and I decided to just do it cold turkey. Again it sucked with the side effects, but they weren't quite as bad as the first time. After a few weeks I was feeling better, overall I think I'm over it now.
If it's bothering you that much and you're really driving your wife nuts, then try a super long taper like I did, including the half pill routine. Then if you still think you need another A/D maybe see a psych about getting a script for another type of A/D, I was thinking about trying prozac or maybe paxil. But After all the BS I went through with the lexapro and then the effexor, I decided not to risk it. I've come to believe that it's appropriate for human beings to be miserable at one point or another in our lives. It's not natural to be shielded from all emotional suffering and down time - within reason of course, and everyone is different. But based on my experience with A/D's (and obsering others who also use them for more serious forms of depression), one thing's for sure they're no panacea or cure all that's for certain.
Hope you're feeling better soon, hang in there!
PS>> Oh yeah, the muscle mass comes back after stopping. I'm still not there, but my leg and arm muscles puffed up pretty quick as soon as my hemoglobin rebounded (within 2 weeks of stopping the riba) and I was able to start running around doing chores (including light logging/sawing wood which really helped get back on my feet). There is light at the end of the tunnel, believe it or not.
thanks for the input. I did do a taper similar to yours. In fact my experience was almost exactly as yours. I restarted and then stopped again. This is sure miserable stuff and I won't use it again.
"I've come to believe that it's appropriate for human beings to be miserable at one point or another in our lives." I am reminded of Jack Nicholson in as good as it gets - LOL.
I don't have any advice for you but just wanted to let you know that you're not alone. I had a total meltdown this AM and considered stopping the trial. The last few weeks have been a nightmare. I am taking Prozac and have no problem with it but they decided to give me an Rx for Xanax as my temper was getting out of control. I took it one day after I lost it with an employee but hated the way it made me feel....basically like a zombie. It made me so tired I could hardly function. I was thrilled to get the news that I had passed the 12 week criteria to continue and that helped for a couple days. Then I developed a BAD bout of asthma. They don't allow oral or IV steroids on this treatment so I am only able to do the inhaled steroids and a rescue inhaler.
I also had hoped to feel better after the 12 week mark but so far nothing has changed. I missed 2 days of work last week and I'm not sure I'll be ready to go back on Tuesday. If today is any indication...I won't be. I am also having a lot of trouble with my BP. It keeps dropping very low. The last few days it has run about 85/60. I have taken meds for high BP for over 20 years but I discontinued taking it this weekend. It still hasn't risen so that may become another issue.
Then lets not forget the anemia :-)
I feel like I'm OD'ing on some bad drugs.........
have you tried tranquilizers? ask Goldyn and some others, they really helped a lot of people get through treatment, ativan is supposed to be the easiest on the liver (or so the lit says) I really hope you can help yourself in any way possible, you sure have been nothing but decent on this board, I'm sure the people in your life realize youre on some strong drugs, take care and be well Andiamo!
My daughter was on effexor, and during withdrawal she complained of cabbage head. It was a long drawn out process. My mother switched directly from Effexor to Lexapro without complaint. What side effects are you having that stopping them now during treatment is your only option. It seems like a double whammy.
I broke down and started prozac just before my move. Prior to that I'd been trying therapy. The prozac is great, really calms me down, but it does seem to increase my appetite and clouds my thinking.
I'm trying to wean myself off it, now, from 20mg a day to 10 and after a week or so down to 5.
Without the prozac I wouldn't have survived the moving stress.Good luck,
This may help you in determining whether you switched to a placebo for the Group D Arm, or whether you have remained in the Group B Arm.
Telaprevir - thin layers of the drug melt away on your tongue as the saliva adds moisture to the tablet. The layers are dissolved as a subtle chemical reaction occurs similar to the carbonation of an alka seltzer tablet. The after taste in the mouth is slightly metallic in nature. The telaprevir is extremely hygroscopic in that it readily absorbs moisture from its surrounding environment, thus the reason that the pills must be protected in the blister packs.
Placebo - bland, no taste, no chemical reaction when contact is made with tongue and saliva.
Andi - yanno ---- I've been meaning to tell you - for 67 --- dang --- yer looking pretty darned good!
Anyhow - don't worry - if you're not noticing a difference in the placebo/not placebo - then you probably were getting the real thing. (Right?)
I don't know if this will help - but XANAX and Lorazepam (ativan or valium) worked well for me during situations that I needed them... Not an every day thing - but enough to keep me mellow when I was hitting boiling points.
I think age has a lot to do with this disease and the way treatment affects each person.
Just my 2 cents on that.
But you've got a great attitude for one who has been through so much - so keep your head high - and keep keeping on... I mean - sheesh --- check out that boat... Check out your life --- You look like you've always taken the bull by the horns ---- so this too shall pass.
And Just remember --- on the days you aren't screaming at everyone ---- REMEMBER TO TELL THEM YOU LOVE THEM... Make up for it as you can...
And as far as your wife:
Special love notes left in hidden places... Rose petals on the bed... Night time massages (without expecting anything in return...) coupons for household chores.... A red ribbon wrapped around you like a towel.... A romantic getaway... A picnic in the park... A walk on the beach after dark... with a little makeout session in front of the firepit...
Just because you've passed 50 doesn't mean you can't be freaking goofy romantic with her...
Anyhow --- here's hoping for you!
I have been taking effexor xr 75 mg daily for 2+ years and have no thoughts of soon discountining it however; I know many that have come off of it and have a really hard time..I would advise you to ask the dr. to help you wean off of it...luck :) shelly
Sorry to hear you are going through all this. You will overcome this! The fact that you have the awareness and you are not in denial is a big advantage.
dmhrdh: I am sorry you are having problems as well. I find that when I am taking effexor, I can barely move. I don't care if I even get out of bed for an entire day. I can't stand the feeling of no highs as well as no lows. We certainly are taking some bad drugs, that hopefully are doing some good things as well.
Forseegood: I just returned from the medical center with a prescription for lorazipam. I hope it helps. You take care as well.
katerika: It is a double whammy, but I just can't stand effexor any longer. Ciao!
wyntre9: Thanks for the support. I tried Prozac, but it also had bad side effects for me.
GoingForward: Those of us in Prove 3 have signed a consent form that prevents us from discussing the placebo in public forums. I don't want to get kicked out of the trial. Thanks for the tip though!
Meki: Thanks for your support and humor. I love reading your posts. Besides that, I love getting compliments from attractive young ladies even though I am happily married. Still vain at 67! Do you live near Anchorage? My cousin was a judge in Anchorage for many years; he retired a couple of years ago. He traveled around the state to remote sites to hold trials.
Shelly: Doc advised Lorazipam as a way to help. I will report back after I try it.
fingirl: Always good to hear from you and thanks for the support. Post a profile so we can see more about you.
all: The most difficult aspect of this for me is to be in a trial while the CEO of the company repeatedly makes statements to boost the stock price that have quite an impact on those of us in the trial. I do not like to hear that 24 weeks is the optimal treatment while there is a chance that I will have to take the drugs for 48 weeks and perhaps suffer permanent damage because of that. I think Vertex now has a moral responsibility to provide us with enough information to decided for ourselves to stay for 48 or terminate at 24.
I know we agreed to a trial, and owe Vertex something, but Vertex owes us as well and the CEO should have kept his mouth shut if he expected us to blindly stay in the trial without taking our own health into account. These drugs have serious side effects as you all know.
I agree, Vertex has a responsibility to patients (that for the good of all mentality can only go so far, there are human beings in the mix and they count too!) just at this board, and with a very crude tally, there seem to be more way more then a few who are getting past the 3 month mark still cleared on Vertex (which has a very high percentage of ultimate svr) all I can say is do what's best for yourself as well as the trial....
faccia che cosa è il la cosa migliore per lei!
hey, I feel it's perfectly okay to give each other compliments as to we feel others are attractive, etc...being married doesn't mean we're dead to all that is around us, ha ha!
Kodiak --- But both Anchortown and Kodiak are superbly wonderful places to be.
Hey - in the industry that I'm in - I'm thinkin' I probably know your cousin. LOL!
Ahhh - well you should be getting compliments - so there... Nanner nanner boo boo... LOL!
His name is William F--d. Don't want to spell it out, but you will be able to fill in the blanks if you know him.
I love your ability to joke. I have not been able to tell a joke since I started treatment and particularly since I stopped effexor. I did take Lorazipam last night and had a decent night's sleep. Perhaps that will be the answer for me.
My wife was born in Italy and came to the US when she was a young girl. She can speak Italian with a perfect accent and speak English with no accent unless she gets drunk or angry! Luckily for me, that is not very often.
Do you speak fluent Italian? That was a complex sentence in your post. I started using Rosetta Stone to learn Italian and was doing reasonably well before I started TX. Now , I don't use it. I will start again once I am off the drugs.
Ayuh - probably do... LOL!
Joking is the only thing that kept me sane during some of the rough times --- it kept me on track, kept me from feeling like an idiot - and kept my mood light when all else failed.
Laughter was my medicine.
Still is - and hopefully will be til the end of my days. I'd like to go out with a smile on my face.
I love your attitude. I am a serious person that can laugh even at myself, but I am a long way from being as humorous as you.
If you run across BIll, tell him I said hello - LOL.
I have taken lorazipam for two days now and slept well. I feel much better now.
I caution anyone on effexor or thinking about taking it to pay attention to the problems of withdrawal. It is really tough!!!!!!!!!!!!!!