Coming off setraline

[sunburntfizz]

Without going into detail here DD (17) will be coming off setraline. We will be reducing dosage by 25mg every 2 weeks. On the way down we may hit the dose that is right but right now 100mg hasn't suited. The advantages don't outweigh the disadvantages for her right now. There's not enough improvements and the anxiety and feeling on edge is still there. She has ASD so we don't know what is ASD and what is the depression or the medication. She also has extreme tiredness.

What are your experiences and learnings of a good way of coming off this.

How is your DD doing OP?

I was on 50mg and doc advised to go down to 25mg for two weeks.

Experiences so far

Day one
Generally fine, serotonin spikes, bit flat/spaced in evening

Day two
Felt like I was coming down with cold or having allergic reaction. Eczema flares up. Itchy everywhere.

Day three
Helped by fact it was Friday, bit out of sorts. Ingrown hair becomes infected-the pain.

Day four
No focus. Skipped gym as felt I might get cold. Ate really healthy low histamine food. Pain in lower abdomen, bloating, hot, sweats, nausea. Also ovulation time of month.

Day five
Woke in night thinking I might be sick. More pain in abdomen. Stuck to water only which helped. Sweats all day. Epsom salt bath helped. Also using lavender products and listening to calming music.

Day six
Anxiety about the week. More sweats. Some anxious thoughts but use techniques to help. Afternoon nap helps. Early night.

Day seven
Now in luteal phase. Less sweats. Morning OK. Anxious in afternoon- calming herbal tea helped. Fine in evening. Early night.

Similar pattern to day seven today.

If you can ride it out it does get better.

Keep the positive thoughts / behaviours going too.

I only realised on day five this was withdrawal- I thought it was something I ate!

It seems to magnify things but does level out!

Thanks @LiveandBreathe for posting. It is helpful to have another persons experience.

DD went from 100 to 75 over 2 weeks and generally didn't feel worse at all. In the 2nd week felt less jittery and on edge and able to do more before getting tired.

She has now gone from 75 to 50 and we are only 6 days in but this is completely different. She has felt very spaced out and felt as she was disassociating. She seems to feel hot and cold and her bones ache. Definitely feels weird. she also feels completely exhausted. I am really hoping by next week it will get better.

I have read achey bones can be a thing. I need nine hours sleep or I can't function- I was okay on seven and a half before. Light daily exercise helps- mix of cardio and strength. Also eating lots of greens. I also use a weighted anti gravity blanket sometimes - sleep like a log.

I was okay on 50 but did still need to eat and sleep well or I could feel awful. I could have stayed there but it had been six months and I had everything positive in place to come off.

You might find reducing 25mg every month is better-it fits the monthly cycle anyway, if that helps!

My DS is tapering sertraline and is on 12.5mg. As soon as schools finished he will reduce his dose again by half (assuming he can cope without too many side effects). My advice is do not drop the dose until your DD has stabilised on the lower dose. This may mean holding for a month or possibly longer. Good luck with it.

The sweats went by day 10, thankfully. I feel okay now. Sounds like dropping by 12.5mg and taking longer is an easier ride. Best of luck too.

Thanks al this is really good advice. For those on doses such as 12:5 do you just cut 25mg tablets in half and after that do you move to liquid Setraline.

Her spaciness is lessening. The thermal regulation is still not great. She gets really cold in the middle of heatwaves. Hoping will settle.

I have 50mg tablets that ibhave to cut in quarters to get 12.5 so slightly arbitrary. My go will not prescribe liquid sertraline so I will do something they would not approve of and I am not recommending (but it works fir us) and make my own from a 50mg tablets in 50ml of water. My son is really quite sensitive to the sertraline so he needs to come off really slowly. He will drop to 6mg next week but if he has side effects he will updose to 10mg. We desperately want him off the meds but there is no point in him feeling poorly whilst doing that so if it takes us a few months we have to accept that.i just wish the withdrawal was not so horrid fir him. Glad things are improving for your DD.

The only advice I can give is do it much much slower than the doctor suggests.

I'm due to start skipping a day next week. That feels like too much yo yo-ing when the dose is still 25mg. I can't decide whether to alternate days 12.5/25mg or just cut down to 12.5mg. I feel like the pain of the last cut back is still pretty raw! Its just a lot of change. I think I might dip my toes in with the former for a week.

Mmmm...good to know.

www.nhs.uk/news/medication/calls-for-guidelines-be-revised-over-antidepressant-withdrawal-symptoms/

Wish you all the best with this next cut @LiveandBreathe. I worry about the alternating dose on different days and whether this would mess with things. DD due to cut down to 25mg this Saturday but think we are going to push it out to end of next week. She is travelling next week
And don't want her to experience the same symptoms while she is away from home.

All of these side effects is making me realise how much the medication messes with the brain and the nervous system. I can see why people go down the holistic route if that works.

I agree and if I'd known I would have gone down the holistic route. Not to say they aren't a life saver for some but I think people are not being adequately informed. Side effects are usually rare-these seem common and intense.

Well my DS has stopped taking his meds. Last dose of 12.5mg was Friday morning. I really wanted him to reduce his dose further before stopping but he is determined. I am supporting him but if he starts to feel horrid withdrawal I will try to persuade him to go back onto a lower dose if 6-10mg. We will see! He says he feels fine and only has slight dizzy spells. Hmmm, am crossing fingers it’s not the start of some horrid withdrawal. I will keep you posted.

How long has she been on it?
I was told to taper like that and it was awful.
Another doctor said due to being on it a while I should have tapered much, much slower.

I took 12.5mg on Friday and am now alternating with 25mg. I felt okay on Friday - bit flat and slightly whoozy/dizzy. Yesterday I was like the Duracell bunny. Today on 12.5mg has been absolutely fine, but I have done loads of exercise, and achieved a lot both the day before and today which has helped mood. Not too sure how I'll pan it out from here but I am pleased the drop down 12.5mg was not as bad - as long as I keep busy and exercise I'll be fine.

They really underplay how debilitating the side effects can be. I was physically too unwell to exercise in the first few days and had a day off sick.

@Rainbows12 how is DS? DD will be moving to 25 on Saturday. Maybe for a couple of weeks and after tahrs we will need to decide where we stop completely or do alternate day.

@itsbetterthanabox she started setraline last November but has never stabilised on a dose.

@LiveandBreathe DDs Doctor is implying that she shouldn't do 12.5 br just stop altogether after 25 or do alternate days

@sunburntfizz DS is doing ok so far.
Day 4 of no sertraline and symptoms are dizziness spells and slight agitation. Eating and sleeping fine. When he dropped from 25 to 12.5 he suffered with the same dizziness but it all levelled out after 7-10 days or so although He had one particular day that he felt very faint and he was aware of feeling rage for several days for no reason. I kind of wish we could fast forward the next 6 weeks to see where we are.
The alternate day thing didn’t work for DS as he felt side effects on his day off then the pill went in and the effects cleared then he got side effects again and so on. He decided just to stop on the agreement that if after a few days he felt unwell (unable to function nearly normally) he would go back on and reduce more slowly. I wish your DD well with the next reduction. Please post an update with progress.

Things mostly as they were before. She has had more moments of tiredness this week but she has also been away at an offsite camp so busy days.

Just wanted to say I came across a Facebook group called setraline side effects and withdrawal symptoms. It is really interesting to read the side effects that some people are having. It's making me realise that my daughter has been experiencing some of these ie joint pain,. Feeling very awful that maybe going on meds wasn't the right decision
For us.

They also advise that you should
Taper in really small
Increments and take omega 3 and magnesium to minimise withdrawal symptoms. Thought I wold share this just in case it is helpful.

@sunburntfizz
Thanks for advice and info. I was aware of the 10% taper recommendation and was all set to do this but DS just wanted off meds. I totally understand your concerns and feelings about the meds. I would say to you, you can’t look back or undo what has been done. I am sure you feel like me...upset and bewildered that at no point was it mentioned how hard it can be to discontinue. I know these meds are life savers for some but I do think they are perhaps over prescribed to those who would do better with a more holistic approach. What you can do now is support your daughter during her taper. Only go as fast as she can cope with. When my son dropped from 25mg to 12.5mg, we held that dose for 3 months (longer than required but I wanted to be sure he was stable before we dropped again). I know it’s different for everyone. I would be reticent about reducing any dose until stabilisation on the lower dose is achieved. Reading about the withdrawal is scary but I take comfort in knowing all the straightforward cases are never written about online. X

Thanks rainbows. I know on some level ithas helped her but also made other things worse. These possible side effects (which we thought were depression symptoms or ASD symptoms) have affected her schooling and possibly her future as A level year. But I am not going to dwell on this now.

Can I ask what was your reduction schedule ie what did you start with and by how much did you reduce and what time periods? Would you advise to go from 50 to 25 or to 37.5 and if so for how long?

My son was supposed to be on 50mg but he never got beyond 25mg. He started dec 17. He had just turned 13 (I can’t believe I agreed to him going on it but there you go). He was not leaving his room at the time....anyway, he had been misdiagnosed. 2 months ago he had a high dose of abx and his symptoms cleared within 48 hours but we were still left with the problem of removing sertraline.
If I were you, I would drop to 37.5 and see how she goes but it is different for everyone. Trial and error unfortunately. There is little point in rushing despite the burning desire to live without this drug. I am just waiting for withdrawal to slap us hard. It’s a sit and wait. Sounds like you are doing a great job of being there for DD.

Thanks rainbows. Sounds like you are for your son too. Did you mean that what he had cleared up with antibiotics?

@sunburntfizz yes. My son had a confirmed diagnosis of PANDAS. He had sudden onset ocd and anxiety symptoms but it’s taken 4 years to figure out it came from brain inflammation caused by an untreated bacterial infection. The original infection is now treated, his gut is being cleared out and repopulated with good bacteria and his very low levels of b vitamins and vitamin d are being supplemented. This is not a story applicable to everyone by any means. X

Sorry to hear that you and your son had to go through such an ordeal but glad that you could get to the right answers in the end. And that he is in recovery. Funnily I have been learning about holistic nutrition to address mental health issues and gut health is really important. I am looking into this further.