When to wean off SSRI?

[saidie10]

Any thoughts or experience with weaning off SSRI? My son has been on a low dose of Zoloft (25mg) for 1 year. In April before we confirmed PANDAS, we tried to take DS7 off and the symptoms came back very quickly so we resumed the 25mg. After our appt. with Dr. R in Dallas and the confirmation of immune deficiency and PANDAS, we all talked about trying to wean off Zoloft again. We lowered his does to 12.5mg about a week and a half ago. OCB's are quickly creeping back in. DH thinks we should just keep him on the 25mg until he is fully treated. What do you guys think? When would you, or did you take your child off an SSRI if they were on one once you found out it was PANDAS and that you were just putting a bandaid on the problem instead of fixing the root cause. Now that we know and are hopefully successful at some point in fixing the root of the problem, when do you take them off the SSRI?

[Phasmid]

If I had it to do over again, this is how I would wean off:

 

take the normal dose and using a cheese grater, scrape of a little of the pill. Not kidding. Next day, take off another bit (like two scrapings). Next day three scrapings, and so on until you are done. That is how slowly weaning off needs to be.

[peglem]

I've been told zoloft is a tough one to wean. I like the cheese grater idea, but I think I'd actually maintain new dose for a week at a time- give the body/brain a good adjustment period. As for when? I'd want to wait until PANDAS recovery has been stable for awhile....maybe 3 or 4 months.

 

The 1st three months of 2010, my daughter was doing very well and I decided to start a wean of her Lamictal. She was on 250mg/day. I began by cutting 25mg from her evening dose, and stayed at that dose until I saw a full week of stability- then I'd cut another 25. I did not take it back up if she floundered. By the time she started a new exacerbation, she was down to 150mg/day. I've kept her there, but as she continues to make progress, I will start reducing again, as long as she stays stable.

[MomWithOCDSon]

I was just considering starting a post on this topic, so glad to see it appear here this morning!

 

Our DS13 has been taking one SSRI or another since he was 7, believe it or not! We didn't know we were dealing with PANDAS until this past October, and by that time we'd tried about 4 different SSRI's and a host of other psych meds. We came to PANDAS because the SSRI's had ceased to be of any assistance to him, regardless of which one we tried or at what dosage.

 

About the time we discovered PANDAS, he'd been put on Luvox, and the dosage was up to 200 mg.; our understanding is that Luvox dosage "tops out" at 300 mg., so DS was on a fairly high dose. Once we tapped into this forum, we were introduced to other family's negative experiences regarding SSRIs and their PANDAS kids, and someone provided the Storch research paper, as well. Meanwhile, DS continued to improve on abx, so we left the SSRI in place, feeling it was neither helping nor hurting him at that point, but relunctant to change too many things at once.

 

This summer, however, with more free time on his hands and a looser schedule and routine, DS's OCD seemed to ramp up a bit again. So we decided to try stepping down the SSRI and see if, since the abx was helping him recover, maybe now some of that SSRI was becoming "redundant" and activating rather than assisting him. We stepped down from the 200 mg. to 150 mg. and held that for 3 full weeks. In just the first couple of days, he seemed to improve in terms of general anxiety level and emotional lability, but over the 3 weeks, his OCD behaviors seemed to ramp back up a bit to where we were considering going back up on the SSRI, however reluctantly.

 

But then, because we were already on a "reduction trajectory," and we could always go back up again if we needed to, I talked DH into trying lowering yet again and see what happened. It's still pretty new, but 6 days ago we lowered the Luvox yet again, to 100 mg. The positive impact appeared within 48 hours! It's like I have my old kid back! He's more positive, more upbeat. He still stresses some at transitions and decision-making, but it is shorter-lived than before, and it doesn't get him down for hours like it used to; he bounces back much more quickly. I'm knocking on wood, but I am 95% convinced this is all the result of reducing that SSRI dosage.

 

So, now I'm a true believer in reducing, if not weaning off entirely. The Storch study DID find some benefit to introduction of an extremely low SSRI dose, but it was almost infinitesimally small as compared to the doses some of our kids have been on. But I would take it slowly, as sometimes what you think might be an increase in behaviors is really more of a withdrawal symptom, especially with regard to some of the tougher SSRI's to curtail. I, too, have heard that Zoloft is a tough one to cease, though I don't have personal experience with it (our DS also tried Zoloft at one point, but I think we only gave it a couple of weeks at a fairly low dose before we concluded that it wasn't helping him, and dropped it).

[jayjay]

Any thoughts or experience with weaning off SSRI? My son has been on a low dose of Zoloft (25mg) for 1 year. In April before we confirmed PANDAS, we tried to take DS7 off and the symptoms came back very quickly so we resumed the 25mg. After our appt. with Dr. R in Dallas and the confirmation of immune deficiency and PANDAS, we all talked about trying to wean off Zoloft again. We lowered his does to 12.5mg about a week and a half ago. OCB's are quickly creeping back in. DH thinks we should just keep him on the 25mg until he is fully treated. What do you guys think? When would you, or did you take your child off an SSRI if they were on one once you found out it was PANDAS and that you were just putting a bandaid on the problem instead of fixing the root cause. Now that we know and are hopefully successful at some point in fixing the root of the problem, when do you take them off the SSRI?

My son was on 100mgs of zoloft before we had a PANDAS diagnosis. We weaned him off over a two month period. We knew we were moving toward IVIG and I wanted him to be off of it before he had it. We did see a ramp up of OCD and anxiety while were were tapering but we "rode it out" knowing that I did not want the zoloft to be a factor after the IVIG treatment. We are about 5 weeks out from IVIG and waiting for it it "kick in" but very glad he is off zoloft!

[EAMom]

SSRI #1 May 2008: Weaning off Lexapro (short half life--so this is a TOUGH one to wean) resulted in @#$%^&. This was b-4 PANDAS was controlled (hadn't discovered Advil/Azith. yet) but we wanted to d/c b/c of serotonin syndrome (akathesia, aggression) from the SSRI. MAJOR headaches, flu-like symptoms, and the return of Anorexia Nervosa in FULL-force (2 pieces of bread in a 24 hour period). Instead of weaning off, we ended up transitioning to Prozac.

 

SSRI #2 Nov/Dec 2009: Tried to wean off Prozac (on 10mg/day--which is considered a low dose), about 3 mo. after first IVIG. Prozac has a long 1/2 life so it is supposedly self-weaning (unlike Lexapro which has a reputation of being difficult to wean)...nevertheless, we decided to drop to zero slowly over a 4 week period, vs. going "cold-turkey". She had a significant increase in lashing out, irritibility, aggression, social anxiety, anxiety, concern about being late, and defiance correlating with the decrease in Prozac. Note: We didn't really see an increase in OCD. So, after 1 mo. we couldn't stand it anymore and we put her back on the prozac. I don't know if the mood changes were:

1) a by product of the withdrawal (which is suprising, giving that Prozac is supposed to be self-weaning, and we didn't go cold turkey)

2) the low dose SSRI actually was doing something good to her brain chemistry

3) the anti-inflammatory effect of the Prozac (this is my favorite theory) was helping dd http://www.sciencedaily.com/releases/2010/...00225082441.htm

 

At this point I'm not in a rush to mess around with things now. dd had her 2nd IVIG at the end of May. Her mood is great. She is happy, cooperative, mature, kind to her sister... and her only remaing symptom is a "measurement ritual" (happens when she eats). I'm not willing to change any variables now!

Edited July 1, 2010 by EAMom

[peglem]

SSRI #1 May 2008: Weaning off Lexapro (short half life--so this is a TOUGH one to wean) resulted in @#$%^&. This was b-4 PANDAS was controlled (hadn't discovered Advil/Azith. yet) but we wanted to d/c b/c of serotonin syndrome (akathesia, aggression) from the SSRI. MAJOR headaches, flu-like symptoms, and the return of Anorexia Nervosa in FULL-force (2 pieces of bread in a 24 hour period). Instead of weaning off, we ended up transitioning to Prozac.

 

SSRI #2 Nov/Dec 2009: Tried to wean off Prozac (on 10mg/day--which is considered a low dose), about 3 mo. after first IVIG. Prozac has a long 1/2 life so it is supposedly self-weaning (unlike Lexapro which has a reputation of being difficult to wean)...nevertheless, we decided to drop to zero slowly over a 4 week period, vs. going "cold-turkey". She had a significant increase in lashing out, irritibility, aggression, social anxiety, anxiety, concern about being late, and defiance correlating with the decrease in Prozac. Note: We didn't really see an increase in OCD. So, after 1 mo. we couldn't stand it anymore and we put her back on the prozac. I don't know if the mood changes were:

1) a by product of the withdrawal (which is suprising, giving that Prozac is supposed to be self-weaning, and we didn't go cold turkey)

2) the low dose SSRI actually was doing something good to her brain chemistry

3) the anti-inflammatory effect of the Prozac (this is my favorite theory) was helping dd http://www.sciencedaily.com/releases/2010/...00225082441.htm

 

At this point I'm not in a rush to mess around with things now. dd had her 2nd IVIG at the end of May. Her mood is great. She is happy, cooperative, mature, kind to her sister... and her only remaing symptom is a "measurement ritual" (happens when she eats). I'm not willing to change any variables now!

So glad to hear your daughter is doing good! I've been wondering how things were going for you guys.

[EAMom]

Thanks Peg...I hate to jinx things, but so far so good.