Do SSRIs ever have *lasting* ill effects, even after stopping taking?

[Wombat140]

I've had OCD for several years and, after trying all kinds of things without success, I'm considering taking SSRIs, but there's one question I feel I need an honest answer to first.

 

Are they ever known to make OCD symptoms worse permanently, or otherwise cause lasting problems that continue after you've stopped taking them? If so, how rare is this?

I know SSRIs sometimes make symptoms worse at first, and that if you're unlucky and they don't suit you they sometimes just make symptoms worse and stay worse until you stop taking them. If that was all, well, they say you can survive three weeks without food and three days without water. (I'm not being facetious; not long ago there was a period when my OCD actually prevented me from eating.) But if it might not necessarily clear up when I stopped taking them, then that's rather different - I don't really feel I can risk that, my OCD's so severe at the moment that any more might become unlivable. Does anyone here know whether that ever happens? If so, how rare is it?

Many thanks in advance,

Wombat140

[MomWithOCDSon]

It's been our experience that SSRI's, in the right dosages and at the right titration schedule, can be helpful. And we've not seen any lasting ill effects due to taking "the wrong one" or even the wrong dosage.

 

However, I would be very careful and wary of starting off at any dose greater than, say, 1/2 the normally recommended dosage; for whatever reason, PANDAS/PANs folks tend to be more sensitive to SSRI dosages than non-P/P folks, and few prescribing doctors or psychs truly understand that.

 

Secondly, we know from some bad experiences, both with P/P and non-P/P, that the titration schedules frequently recommended by these docs -- both up and down on dosages -- are far, FAR too rapid. And that can really mess with your brain. Both my P/P son and my non-P/P relative experienced "zaps," activation and wide, crazed mood-swings when going up or attempting to come off these SSRI's. Honestly, I don't know where psychs get their "recommended schedule" . . . the Big Pharma companies, maybe? But they are patently inappropriate, and almost any patient who's experienced the disturbing results of moving too fast in either direction will tell you the same thing. Apparently, though, because few of these patients have medical degrees hanging on their walls, their experiences are deemed "merely anecdotal" and not taken into proper account.

 

I will say, however, that despite some bad weeks when increasing or decreasing these doses too rapidly completely screwed with my loved ones, there were no "lasting" bad effects in the end. Just harsh and painful learning experiences, which I attempt at every opportunity to share with others so that they can avoid falling into the same trap. In the end, the SSRI at the right, steady dosage has been tremendously helpful for both my family members.

 

Sorry to say, I just don't think you can entirely trust the doctors entirely on this one, even the most well-meaning and/or experienced one(s). Unless they suffer from a similar condition themselves and take these medications, also, they have no true experiential information to bring to the process. So, I would say again, halve the dosage, and titrate up at half the speed they recommend, at most. And if you decide you don't like how it makes you feel, or if even at a standard dose, it's not helping sufficiently, then you must titrate down and off again, very slowly.

 

And don't forget to give it at least four weeks at the "ideal" dosage before you throw in the towel and deem it ineffective. Most doctors will tell you it can take up to 6 weeks for an SSRI to become fully effective, and that is likely true; however, in every case (and we've had lots -- years --- of experience with a multitude of them), the positive impacts were in full force by about week 4.

 

All the best to you!

[nicklemama]

Eloquent Nancy. Back when my son started with OCD and anxiety, PANDAS was not widely heard of. He did very poorly on standard dose SSRI. He only lasted 6 weeks on them. Now they are a recognized part of treatment and it is generally understood by some PANDAS docs to start with a very low dose, well under the recommended levels by pharma. I don't think any activation or side effects are permanent.

[Wombat140]

Thanks very much, glad I asked, good to know about the dose thing in advance!

 

As for the "lasting effects" thing, I'm a bit worried because I came across a posting on the SANE forums from somebody who says the side effects DID continue for months after stopping taking them, and there was a reply saying "oh yes, I've known other people find that". http://www.sane.org.uk/support_forum/viewtopic.php?f=6&t=619

 

Don't really know who to ask about this. I feel as if I might not get an honest answer from a psychiatrist, even once I got to see one (bit of a waiting list here), because they'd see what a bad state I was in and gloss over any possible problems so as not to put me off. That's been the problem on some OCD forums I've used, certainly. They don't want people 'spreading alarm and despondency' - bit paternalistic - the culture is that SSRIs and CBT are The Answer for OCD and encouraging people to take them up takes priority over everything else.

Edited May 20, 2015 by Wombat140

[MomWithOCDSon]

Well, I know that not all SSRI's are created equal. Some of the earlier, or "first generation" ones, I think, many stay away from. I've heard about some issues with Paxil and Wellbutrin but again, those stories were typically affiliated with trying to wean off the drug and doing it at a schedule that wasn't appropriate (too fast).

 

You might want to do some personal research into some of the specific SSRI's that you might consider or that your doctor has suggested. For instance, Dr. Storch and SFU have published a number of studies with regard to Zoloft and OCD, and that's ultimately the SSRI we've landed on . . . and stayed with . . . for about 6 years now.

[Wombat140]

Hi thanks very much. Afraid brain not working well atm, can you suggest me where to conduct research? Who are SFU and Dr Storch=h? Suppose doesn't help that I've been relying on Open University online library as universal way of finding journal articles and now my degree's finished I've no longer access.

 

Rang pharmacist (can do that for free here) but no good, hadn't even heard that SSRIs can make OCD symptoms worse if unlucky and was inclined to think my friends with OCD who'd had that must have been imagining it.

[MomWithOCDSon]

If you PM me an email address, I can send you the research I have on the topic.

 

USF is University of South Florida, and Dr. Eric Storch is a colleague of Dr. Tanya Murphy, one of the leading pediatric PANDAs docs here in the states. Dr. Storch is on the research/psychiatry side of things and has delivered a lot of lectures and panel presentations at the International Obsessive Compulsive Foundation conferences. Because of USF's generally pediatric focus, much (though not all) of his research is based on child subjects; however, he's very knowledgeable with regard to OCD and general pharmacology in the treatment of OCD, irrespective of age group.

[Chemar]

My son was severely harmed by SSRI Luvox. Some things never really returned to "normal" after it

[Wombat140]

Nancy thanks very much for e-mail, those papers a huge help! Chemar, looked up your other postings, what a shocking story - you'd think that someone might have realised what was happening! but since he was already reacting so badly to the Haldol, can you really tell whether the Luvox made any difference?

[Chemar]

Yes, we were able to document specific changes that took place with Luvox that were very different from what he suffered on Haldol.

The luvox came into the mix some months after he started Haldol

[Wombat140]

Ah ****. What were the changes, in particular, please? And after how long/to what extent did they go away after stopping taking? And how long was he on it before stopping?

 

Also has your son ever had the 23andMe DNA test done? I'm hoping very much that that could be a way I could get early warning of whether I might be one of the ones who react badly to SSRIs.

Edited June 2, 2015 by Wombat140

[lfran]

www.genomind.com offers a saliva spit test that will test for your likely response to SSRIS. At least, it did in the past.

 

Also, after battling this for years for my son, trying just about everything that was offered, I can say that the very best response was from a clinical study at UCLA that, of all things, is a 4-week attention retraining program. The hypothesis is that OCD is at least partly based on paying too much attention to your triggers.

 

The UCLA program is/was based on research in San Diego (http://nas.psy.sdsu.edu/index.php) by Dr. Najmi that showed this was an effective protocol for adults, and UCLA wanted to study it in kids. Totally noninvasive -- you make a list of trigger words and then you do a computer task (sort of game-like, but not really) that actually trains your brain to pay less attention to the triggers. I saw a huge decrease in symptoms a couple of weeks after he finished the program. It can be done at home with a computer and the proper setup. (The UCLA program requires weekly visits, but they said they might be changing that).

 

The CUTA people used to offer this program for sale/rent where you could use their technique in your own home. I can't find that reference any more, but if you called them (USA: 619-229-3740) they might be able to tell you more.

 

Wishing you the best.

[EAMom]

Probably not the kind of thing you were thinking of, but I do have some concern re SSRI's and growth retardation. I wonder if this happened with dd. She is only 5 foot 1/2 inch. I'm 5'5" and dh is 5'10".

 

She was on Prozac from 2nd to 7th grade (got her period in 6th grade). So, she was on it during a time when she should have been growing a lot.

[dcmom]

Thanks Eamom!

 

Can you share any info on prozac and growth retardation?

 

My younger dd is Teeny tiny naturally (I am only 5-3, my mom 5). She has been on 5mg prozac for a year. I think it has helped with mood, and helped with constipation- but she needs every inch she can get, and next couple of years are key.

 

Prozac hasn't stopped pandas flares. She had strep a few months ago.

[MomWithOCDSon]

We've not use Prozac for any notable period, so can't speak to it specifically. But DS was first taking low-dose Lexapro and more recently Zoloft. At 18 he stands 6 feet tall, and I suspect he's still growing. So in terms of quantified growth height-wise, I haven't seen any ill effects.

 

That being said, despite research to the contrary and denial responses from the two psychs we've had since DS's began taking SSRIs, I do think they've contributed to weight gain. Now whether that's merely because they've assisted him in "chilling out" or because there's an actual link to metabolic function, I don't know. But he was a "pipsqueak," not underweight, but just on the fringe, before SSRIs, and he's had to work hard at portion control and sufficient exercise to keep his weight in check in the last few years while on the medication.