Low Dose Fluoxetine — Scope | Disability forum

Low Dose Fluoxetine

OverlyAnxious Member Posts: 1,736 Disability Gamechanger
Firstly, I just want to ask for no negative replies please - I've specifically not Googled so as not to see any horror stories!  

Regulars will know by now but basically I suffer from severe OCD, agoraphobia and social anxiety, and have a massive phobia around bodies/bodily fluids/illness or injury.  I also have physical issues with stomach/bowel/joints which are either caused or at least exacerbated by the anxiety.  The pandemic obviously hasn't helped, but over the last few weeks it's become almost completely unmanageable.    

I haven't been able to take any form of meds since 2003 due to sech a severe phobia around the potential side effects.  But just keep being told my anxiety is now so high that nothing will improve until I take some SSRIs.  :(

I have been prescribed 5ml of liquid Fluoxetine as the easiest to take and lowest risk SSRI but as yet have not been able to take it - just the thought of taking it causes such high anxiety that my throat is closing/spasming before I've even got the lid off and lower internals are all on the move forcing me into the bathroom.  Not a great start obviously!  :|

Really, I just want to know what I should be expecting from it, especially such a low dose.  What is the result meant to be?  Should there be less anxiety?  Less physical symptoms caused by anxiety?  Or the same anxiety but slower to appear and shorter lasting?  

I also want sort of mild side effects most people experience from it?  (As above though, please no less common major ones as it's hard enough trying to convince my brain as it is!)



  • Wini1960
    Wini1960 Member Posts: 130 Pioneering
    [email protected] Hi i feel for you. I have taken SSRs for at least 8 years. I suffer from severe depression, agoraphobia and social anxiety. If your symptoms are beyond coping i would say take it. I have tried fluoxetine and it didn't sit well with me the side effects were terrible. I have now been taking citalopram for 7 years at 40mg and for the first two weeks a bit of side effects ie yawning and fatigue but after that i feel great. I hope helps. I wish you well?
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,263 Disability Gamechanger
    Hi @OverlyAnxious - I have no personal experience of Fluoxetine, but it's a med that helps with anxiety, depression, panic disorder & OCD. It may take up to 4 weeks before your symptoms improve. As everyone's different, there's no point looking at any possible side-effects, as a person wouldn't necessarily get any.
    Your GP has started you off an even lower dose than normal, & this would also minimise any potential side-effects.
    Again, as everyone's so different, some people need a higher dose than others, & your GP will work this out with you.
    I know it's going to be difficult to try, & will cause you stress whatever I say, but I would look at it this way......being as you are is a worse 'side-effect' than trying Fluoxetine which has the potential to help. I do hope you are able to try it. Perhaps get a glass of water ready to take some sips from afterwards. Also, you could try just getting the top off the bottle first without taking any. Leave it for a while, then try taking it. Fingers crossed. :)
  • poppy123456
    poppy123456 Member Posts: 28,327 Disability Gamechanger

    5mg dose is very low so the side effects would be very small, if any. Although i agree with others the side effects will be different for everyone. Some people can manage medication better than others. I've take fluoxetine myself in the past, although it was a higher dose than you but personally the side effects weren't bad at all and they went after just a few weeks.

    My daughter takes Sertaline 100mg a day for 2 years, at first she did see some side effects at a lower dose but now she doesn't have any at all and the medication has definitely helped.

    All i can say really is try it if you can because it may help you in the long run, especially as your condition has got considerably worse.
  • woodbine
    woodbine Community Co-Production Group Posts: 7,126 Disability Gamechanger
    @OverlyAnxious hi, only your Doctors can know whats best for you, however what I can say is that following her anorexia our daughter developed really bad OCD and was presricibed Fluoxetine she was 17 and it wasn't supposed to be prescribed for people under 18, however her consultant and GP agreed that it would be ok, and it was. Like all meds it took time to work but she suffered no side effects (I honestly cant remember what dose she was on). I'm sure you've been told that all meds have the potential for some side effects in some people (i take 19 different medications but they keep me alive).
    Let us know how you get on?
    Be extra nice to new members.
  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,482 Disability Gamechanger

    I’ve been on Fluoxetine for several years, for OCD and depression. I started on the same dose you have been given but am now on a higher dose. I will try to answer as best I can while staying within the parameters you asked for!

    I started on 20mg tablets which, I think, having looked it up, is the equivalent of the 5ml liquid dose. According to my doctor, 20mg is either the starting dose or the dose used for depression. 40 or 60mg is mostly used for OCD symptoms, 20 is more for depression, but it is normal to start on 20 even for OCD and then to go up.

    It may be the case that you don’t get any effects, good or bad, at all, from 20mg. It is normal to start the patient on a low dose then to up it. It’s not a drug where you just take the required dose from day 1.

    When I took them the positive effects were that I still had the OCD but I cared less about it if that makes sense. I still have OCD as you know from my forum posts but you know it’s not as bad as yours. I still have noticeable OCD but it was much much worse at one stage, I’d say as bad as yours but in a different way, so even if it brings you down to a similar level to me that’s still a vast improvement.

    I noticed the effects after about 3 weeks of taking 20mg, and these effects were increased as I increased the dose.

    It also made my depression a little bit better and the thoughts that I wanted to die went down.

    The others are correct in that as everyone has different side effects there is no point reading too much into them, but if you want my experience, I have had only 2 side effects, neither of which I think would be of concern to you. The first, which for you would probably be of benefit(!), is increased appetite. The only other side effect, which in your case is, again, of no concern, is that alcohol has an amplified effect.

    @poppy123456 @chiarieds and anyone else, I think it is worth mentioning in case you misread, that the dose is 5 millilitres not milligrams. Looking online, 5 ml seems to be the equivalent of a 20 mg tablet which is still on the lower side, but is the normal starting dose, not an insignificant amount.

    It’s easy for people not in your position to tell you to take medication but sadly I’m going to do the same :D I really think you should push yourself to do it if you in any way can manage it. The possible negative effects are negligible and the potential positive effects it could have on your life could be massive.

    Good luck and do let us know what you decide to do and how you get on! :smile:
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    Thank you all for the replies on this one.  I have read them all but there's not much else I can say now until after I've tried it...when/if I reach that point!  :)   It does frustrate me so much that I can't even attempt it, but I also know just how catastrophic the consequences would be if it went wrong.

    woodbine said:
    @OverlyAnxious hi, only your Doctors can know whats best for you, however what I can say is that following her anorexia our daughter developed really bad OCD and was presricibed Fluoxetine she was 17 and it wasn't supposed to be prescribed for people under 18, however her consultant and GP agreed that it would be ok, and it was.
    Hi @woodbine , my Doctors don't know much about me as the system isn't setup for people like me unfortunately.  I'm not able to deal with any sort of medical environment and I'm not able to speak to people face to face or on telephones so we quickly reach an impasse!  I have tried writing letters & emails but they always seem to get misunderstood.  This time I asked a relative (by email) to visit the GP on my behalf to get something for the nausea, but that just ended with an SSRI prescription for anxiety...

    I wanted to ask if your daughter got any practical help with food at all?  I'm convinced that the majority of the current physical issues are caused by food & diet rather than anxiety.  I've tried an NHS dietician but all they could do was offer generic leaflets and suggest eating cake!  My diet is very restricted due to the combination of problems that I have, but I need someone that can look at what I can eat, and help with portion sizes, potentially suggest similar alternatives (high calorie but low bulk/low sugar) and to design a 7 day menu to spread the calories that I am getting more evenly.  I did try asking on an eating disorder site but one of the rules on there was no talking about food which defeated the object for me.
  • woodbine
    woodbine Community Co-Production Group Posts: 7,126 Disability Gamechanger
    @OverlyAnxious yes she did, the NHS paid £30,000 for her to be treated in a private hospital followed by a year of counselling, we were also lucky that we had a fantastic gp.
    Be extra nice to new members.
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    woodbine said:
    @OverlyAnxious yes she did, the NHS paid £30,000 for her to be treated in a private hospital followed by a year of counselling, we were also lucky that we had a fantastic gp.
    That was a decent result then!  Shame you can't send that GP my way lol.  :D
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    Little update on this...  Still haven't been able to risk the Fluoxetine as I'll need things to settle a bit first.  The new lockdown hasn't helped at all.  I know I couldn't cope if it caused a D or V episode...let alone anything worse and needing emergency assistance...and especially now all the hospitals are rammed!  :s  

    But the main problem is that I need the nausea to stop in order to get at least some of an evening meal in.  I was prescribed a dissolvable PPI (proton pump inhibitor) and I've tried to get that in this morning but it's just not going to happen.  When I eventually got one onto my tongue it took too long to dissolve, my throat was rejecting it after just a few seconds and I had no option but to spit it out.  Just having it in there for a few seconds caused a lot of pains and cramps around my stomach and bowels etc, and that all got worse over the next hour or so (presumably caused by anxiety rather than med itself).  I tried dissolving one in a glass of water instead but the pill dissolved and left the main ingredient stuck to the bottom of the glass.

    I have previously tried Andrews Salts in a glass of water but had the same reaction as above and only got one or two sips in.  I may try that again later today.  I can't go through another evening like the last two but if it goes badly twice that'll just reinforce the medication fears.  This is why therapy never works for me as things are usually worse than I expect...

    I just wondered if there were any other stomach settling remedies that could be taken in a glass of water to try?  I'm never going to get an actual pill in any time soon but might be able to persevere with something in a drink.

    The worst nausea is coming before an evening meal, starting at roughly 4.30pm and at it's worst around 6pm - exactly when I have dinner.  The weird thing, which may just be coincidental, is that it always coincides with a bowel movement.  And without getting graphic, it's impossible to push with this level of nausea, but doesn't settle until I've been.  I can't even lean over the washbasin to wash my hands afterwards because everything starts bubbling and shifting upwards.  End up trying to plie so I can keep my body upright lol (not that it's funny at the time!).

    TL:DR - Are there any nausea/reflux meds that can be dissolved in water?
  • Cress
    Cress Member Posts: 1,012 Pioneering
    This probably is a ridiculous suggestion...but rather then put it on your tongue is there anything pleasant that you can put it in or on to swallow that wont bring an immediate urge to vomit?
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    It's a reasonable suggestion but no, I can only take small bites of food anyway and this is quite a big pill.  It also specifically says not to chew or swallow it but I can't imagine what the difference would be.

    I've had this issue with swallowing food for as long as I can remember...even back in primary school I kept feeling like I'd bitten off more than I could chew and wouldn't be able to swallow it so had to spit it out, gagging and not wanting to eat any more.  Probably different now but back then the evil dinnerladies wouldn't let you leave until you'd eaten everything...can't say that helped much!  :D
  • Cress
    Cress Member Posts: 1,012 Pioneering
    Yeah I understand...I have a thing about food...there's very few things I'll eat and if it has to take too much chewing I'll start to gag, everything has to be cut into tiny pieces.
    Dinner ladies were the bain of my life in primary school, they would stand at the disgusting slop bowl a d if it was considered you hadn't eaten enough you were sent back...lost count of how much playtime I missed waiting for a dinner lady to abandon her post lol
    Fortunately I dont have a problem with pills, back of my throat and gone, no chewing necessary ! Lol
    I have one I'm supposed to dissolve in water but it wouldnt get drunk...it gets shoved straight in with everything else.
    Hope you solve it.
  • gillian72
    gillian72 Member Posts: 304 Pioneering
    Hiya @OverlyAnxious , I take. Fluoxetine been on them help me with my triggers an depressing because of my childhood I swear by them I've never had side affects expect for crying lol weird I no but can't cry on them lol an for acid reflux/nausea I swear by omeprazole takes a couple of weeks to notice them working but not sure about liquid form but they r capsule if u like smarties maybe stick them in the tube ( just a thought maybe ) ? @woodbine my tablets are to prolong life aswell ?