Effexor Weaning

[morgan617]

My son is starting to show some POTS signs, on top of everything else.

We were trying to get SSI for him, and he was being seen by a few people. I was told, in no uncertain terms, I was not to become involved in the process. (Fry me a river, I have taken care of him for 26 years now and no one knows him like me...he is as passive as a rock and very stoic) Needless to say, he got rejected as they felt psych notes were not needed, except by a person he had seen once, as opposed to the therapist that had seen him for 5 years. Nor were medical records older than 6 months needed. I was appalled of course, but to no avail. Well, it turns out, this psych nurse guy gave him Effexor without discussing it with his primary, and took him off his celexa, which helped him tremendously.

He was told not tell me anything. aarrgghh.....So now he's off celexa, which helped, and on a drug that is making him so sick he wants to die. He is trying to wean, and then I read that some people can never get off effexor because of serotonin syndrome. His primary had no idea any of this had been done (because I wasn't involved) hates effexor and is very angry. The psych person told Jake he hadn't spoken to him because of privacy laws. Excuse me, if he is a health care worker, he should be reviewing meds with a primary he expects to be doling them out, as he is quitting this job. And since Jake takes over 30 pills a day, you'd think there might be some discussion between them.

So now Jake is really ill on it and even sicker, trying to get off it. We can't get a weaning plan for this drug from the guy that ordered it, because he won't return calls, and nothing to help with the side eefects of weaning from his primary, because he's angry about all of it.

I sent the primary a letter of apology, because I don't blame him for being angry, and he's been a great doctor for Jake. I called vocational rehab and had a letter the next day, with his counselor of 5 years saying she did not believe he could work at this point. I called the psych person and called him a dumb***. That felt good.

Meanwhile Jake can't get this dose lowered. So if there is anyone out there who's had experience with Efexor XR and weaning, I'd appreciate your input. The literature states it is just about the hardest drug to wean off ever and you can have effects for months. Great.......If and when he does get off it, he will have nothing on board, and then we will be dealing with anxiety, panic and agoraphobia. Gee, I wonder why everything wrong with me is flaring........ Thanks for letting me vent and for any help or input.....morganzilla

[flop]

Hi Morgan,

((((((((hugs)))))))) for an angry momma!!

I'm sorry I don't know anything specific about effexor but I do have a friend who had to wean off Paroxetine - which is supposed to be the hardest SSRI to come off. The trick for her was to reduce the dose by tiny tiny amounts and come off over many weeks/months. To help her get smaller steps in the dose reduction she switched to using liquid paroxetine (cutting dose by half a tablet every other day was too much of a change) and a measuring syringe.

I had to gradually come off prednisolone last year and would alternate doses, like 7.5mg/7mg alternate days for a week, then 7mg daily for a week, then 7mg/6.5mg for a week - it takes ages but by using such small steps your body doesn't really notice that the dose if getting smaller.

Good luck for Jake and his Mom!

Flop

[cmtaylor5]

Morgan,

So sorry to hear about this. It's bad enough having health problems yourself, but when it's your kid, it's magnified about 10 fold. (My 14 year old son just had his diagnosis tweaked from orthostatic intolerance to POTS, so I know what it's like!).

My husband was recently on Effexor XR for a few weeks. He had a terrible reaction to it (many horrible side effects, it was a true nightmare), but I do know many people that find it really works. Oddly enough, the one side effect my husband had that made me think this drug would be very bad for many POTSies was orthostatic intolerance. He even had blood pooling in his legs and lots of dizziness and greying out when standing. One of the components in this medication can over do the vaso-dialating thing.

My husband did titer down on it for a period of two weeks to get off of it, but I don't think it would be helpful to tell you the amounts because of possible differences between height, weight, and time on the drug. He also simultaneously started gradually on Cymbalta. It wasn't pleasant, but he did survive it and after gradually weaning off, he stopped having "withdrawal side-effects" after about 10 days following finally stopping. He did have some anxiety and also migraines (for the first time in his life) which the doctor again attributed to the vaso-dilating.

He had no problem with the Cymbalta.

In my opinion, there are too many people prescribing anti-depressants that are not qualified to do so. If you can't get any weaning info for your son from the people who have treated him in the past, maybe he could just go to a walk-in clinic and speak to the physician there about properly weaning. Especially if he is having such a horrible reaction to this drug. He certainly deserves some relief!

From our experience, if he gradually titers down, and even better if he could begin the Cellexa again, I think he will be fine. My husband had a few really bad days, but they are definitely over now.

Best wishes to you and your son!

Carolyn

[ajw4790]

Hi,

I wonder if a well educated pharmacist could help you out? They wouldn't know the entire situation, but they should know the meds.

Just a thought.

I wish you luck!

[Mrs. Burschman]

That's really stupid. Why would a doctor go change something that works?

I think the people who have the most problems weaning are those who have been on it the longest. My advice is just do it s-l-o-w-l-y. I reduced my Paxil dosage by 5 mg. per month last year when I tried to get off of it. Of course, that's when I found out how much it helps my POTS. So I went back on.

I think asking a pharmacist is a good idea. They're really knowledgeable and an underused resource, I think.

Amy

[dsdmom]

Morgan,

I'm sorry your son is going through this. I just wanted to let you know that I have come off Effexor - I actually wasn't on it all that long but had awful side effects so had to come off. I just wanted to let you know it's possible! I was not on a high dose so did not have to wean...but someone else made the suggestion of talking to a pharmacist and that might be the way to go. Although quite frankly, his primary should buck up and act like a doctor, not a child, and start caring for his patient. Just my 2 cents.

[pastordari]

I'm sorry to hear of your son's difficulties.

I was on Effexor for about 5 years. It worked great for me however, I continuiously read on here the struggles others have with this medication. I can tell you how my doctor weaned me off the med; but I don't have any idea that this would work for your son. Please try to get a physician to oversee any changes you make in your son's medications. Given the number of meds he is on it is a challenging process.

I was simultaneously going on Celebrex so is a different situation. However, I was taking 300mg of Effexor XR. The first taper we decreased by 75mg to 225mg. I did this dose for a week. Then, we went down to 150mg for a week. Then, I took a 75mg pill and a 37.5mg for a week. The following week was 75mg. The last week was 37.5mg. You will also need a physician to lead you through this so you can get the appropriate doses of the medication given it is a capsule and you can't just split tablets.

I didn't have any problems, but it was a slow decrease and I wasn't having any issues with the medication. I haven't had any side effects or problems from Effexor XR since.

I hope your son can get back to a place with medications that you and he are comfortable.

Good luck.

[morgan617]

Thanks so much for all your replies and support. He just dreads taking it, because he knows it's going to make him sick, and if he doesn't he's going to get sick. Talk about a rock and a hard place! I actually am slowly weaning him. He's taken it for less than two months...I can't believe the trouble he's having.

Anyway, we decided to try 37.5 cuts once a week. He is now taking a 75 and a 37.5. And an anti nausea med we found in the cupboard that he takes for migraines. Hopefully he has learned his lesson and will discuss this with his primary or me in the future. Especially his primary, even though he is being a little on the petulant side, he has been a great doctor for Jake. Thanks again! Oh, I did call around to the local pharmacies, but they would not commit to anything, except stop it slowly. morgan

[ellen]

Morgan- for the future, you can ask jake to sign a paper with his providers giving him/her permission to discuss Jake's case with you.

That privacy law is real pain when caring for adult children!

[Sophia3]

Hope you get better communication Morgan. I know mental stress can set off our symptoms in a HUGE way and almost make us catatonic and totally overwhelmed.

FYI

These privacy laws STINK for dealing with an elderly parent who is temporarily dementia due to dehydration and medicine as well. &^%$#@!!!^

I have also seen them create huge stress in parents dealing with kids...especially in therapy...can backfire..especially once the kids turns 18. No doubt, Morgan is experiencing this.

IDIOTS who invented HIPPA law.

[pastordari]

Wondering how the weaning is going?

How is your son?

How are you holding up?

[doctorguest]

Many times the doctors would temporarily use a small dose of benzodiazepines during the periods of starting or stopping SSRIs. This may be an option that your son can discuss with his doctors.

[deucykub]

Oh, Effexor is awful, awful, AWFUL stuff.

My PCP in Florida must have had a contract with those folks, because he prescribed it for me for Fibromyalgia and my husband for depression. It was horrible while we were both on it, and going off of it was terrible! We both went "cold turkey" because we are stubborn, and I must admit a tad stupid, ha ha.

Thankfully, we didn't stop at the same time, or I doubt we'd still be together. Our emotions were all over the place. I've blocked out the specific symptoms of withdrawal from my memory banks. My husband refuses to take any kind of SSRI or SNRI now because he was so horrified by withdrawal.

How is your son doing? That therapist sounds like an idiot who deserves a good (at least verbal) thrashing!!!!!

[morgan617]

Thanks for all the input. His primary is seeing him Monday, although it was on the condition that he no longer see the psych person. Jake's last visit with him is today, and boy would I like to go to that meeting....We have discussed this thoroughly and I told Jake he can't be the only person that's been left high and dry by this guy. If he doesn't stand up to to him, he will try and force him to stay on it. Jake is just so passive, he is unable to say no to anyone.

He has been taking anti nausea drugs and so far is holding his own at the one drop. He will see his primary before he drops any more. I was reading about the anti anxiety drugs Doctorguest and since Jake already has such a horrible time with this kind of stuff, I am really hoping he will give him something short term, till the effexor is out of his system and he can get started on something different. He even says he is not able to go without anything and that is really the truth. He has been horrifically agoraphobic in the past from anxiety.

Benzo's are certainly helpful, but he needs an SSRI for the long term. I appreciate everyone's concern. By the way, this psych and the social worker are the only medical people that don't talk to me about Jake. He has signed releases. They are so fired...... I did let him know he could continue to see him as long as he wishes, but he will be paying the co pays, and as he is unable to work and dependent on us for the little he gets, he has decided not to go anymore. I guess that sounds awful, but what a mess, because they thought they could undo all the "emotional" damage I have done to him his whole life, by making sure he got decent care. (They deduced this in one visit)

I want him as independent as possible, but I would rather people didn't try to kill him off without letting me or his primary know.....stillangrymorgan

p.s. his pulse has not been under 100 since he started it.....

[calypso]

Morgan -

I had to wean myself off this drug before. The best way is to do it very slowly by opening up the capsules and throwing away some of the granules every day. It's not an exact science, but it works. For example, to get from 75 to 37.5, I'd open up a 75 capsule and shake out a bit of the granules every day, more and more, until it looked like there were about half in there. Then I'd switch to the 37.5 and do the same.

I did not like Effexor at all. I can't remember why, but I certainly remember it make me feel even more revved up.

Good luck. He can shake these on his yogurt, cereal, etc., or just cap the capsule back up and swallow.

Amy

[morgan617]

Thanks Amy, we have cut him down to 75 mg as of yesterday. If he takes a compazine, it seems to help. It may well be the sedative properties in it I think. I can see he is having more depression and hate to see him not on anything, but hate to think what would happen mixing it up. I am glad he has his doctor's appt in a couple of days. He is doing better (knock on wood) than when he first started to wean. Going down 37.5 each week. I suppose when we get to the 37.5, we may have to dole out of the capsule. Or go every other day after a week. Although they say the main problem is such a short half life...ayyiyi

Scored tablets would sure be nice right now....morgan