How do you decide whether to come off medications (not diabetes)?

[Lucyr]

I had a text from my GP during the week advising that I can stop first amitriptyline and then propanolol, as advised by the weight clinic. I’m nervous about it though, has anyone come off either of these before?

The weight management service had advised me in my first appointment 2 months ago that both of these are linked to weight gain and to speak to my GP about coming off them. I had decided not to as I rely on these hugely to help manage ME / headaches / anxiety.

But, my weight hasn’t moved in the last month, up slightly actually, and when I weighed yesterday (though ok first day back from holiday) it was the same as 2 months ago. My body fat % on the scales has been consistently trending downwards but that’s the only sign of anything moving.

So, I’m considering giving it a go. I’ve tried coming off amitriptyline before multiple times and failed, so not that optimistic. I have no idea how much weight benefit there is in stopping it, if it’s only a couple pounds I honestly think is it even worth the impact on quality of life?

How do you make these type of decisions?

 

[s'nic]

Have you spoken to your doctor regarding your concerns? That seems the first step to me.

I was prescribed the beta blocker Nebivolol for my ectopic heartbeat, and when I queried end dates I pretty much told they expected me to be on meds for the rest of my life. However the consultant did say that it would be possible to try stop taking them and see if symptoms got worse (with the caveat of not trying that out anytime soon).
Obviously since it is to calm my ectopics I would only try it if I hadn't noticed uneven beats for some time (pulsatile tinnitus ensures I hear differences in my heartbeat). And I would monitor the 'with' and 'without meds' difference.

But this is not the same circumstances as yourself, is your propanolol for anxiety? If it is and it has the indent/scoring on the tablet to break it in half then you could try reduce to a half dose maybe to reassure yourself before stopping them entirely?
Remember a lack of an indent/scoring may mean that it is not suitable to break in half (eg a tablet designed for slow release of meds would not be suitable). If in doubt ask a pharmacist.

 

[rebrascora]

I think the problem here may be that the weight management service want to see results (I suspect they may need to hit targets to justify their existence or contract with the NHS) but have no real interest in the issue that these medicines are prescribed for. Maybe that is me being cynical but I think it is a real risk that there could be a conflict of interest with them and if they see this medication as thwarting their work, then you can understand them wanting you to stop them. Who was it that prescribed them for the ME?CFS and what do they think about you stopping them and can they offer an alternative that won't affect your weight? Is it not the ME/CFS itself which is preventing you from losing weight..... logic suggests to me that it probably slows your metabolism.

I think only you know what benefit you are gaining from them and which is more important, your weight or the exhaustion, which I believe was significantly impacting your quality of life and ability to function, so to me, if these tablets are helping with that then they are more important than losing weight at this time. Are the Amitriptyline helping with the persistent headaches you were suffering? If so, that is a big reason to continue with them.

 

[Lucyr]

But this is not the same circumstances as yourself, is your propanolol for anxiety? If it is and it has the indent/scoring on the tablet to break it in half then you could try reduce to a half dose maybe to reassure yourself before stopping them entirely?

I take 3 propanolol a day, it’s for both anxiety and SVT (had an ablation but it failed). The text from GP said fine to stop both though.

 

[Lucyr]

Are the Amitriptyline helping with the persistent headaches you were suffering? If so, that is a big reason to continue with them.

Yes, I’d definitely expect to end up having time off work sick again if I reduce amitriptyline which is why I’m nervous about it. Last time I tried to stop amitriptyline I was only dropping from 1 tablet to half a tablet (and failed, side effects were unbearable), this time I’m coming down from 2 tablets. I only increased to 2 tablets because I had a couple of weeks off work with a headache, took about 2 months for the dose to stabilise and bring the headaches to a manageable level.

Whilst I’m not optimistic of being able to stop amitriptyline or propanolol, I do understand that being overweight has significant risks and I need to solve that though. So I am leaning towards trying just taking propanolol when I need it, and reducing the amitriptyline first rather than stopping it.

Haven’t made an appointment with the GP to discuss as seems it’s my job to decide what to do, he can only advise it’s safe to stop them which he’s already done.

 

[rebrascora]

I was wondering what sort of dose you were on with the Amitriptyline? I have just stepped up to 25mg. I started on 10mg back in early December and the doc advised that the effective dose for anxiety and depression was 75mg. I am definitely seeing a benefit at 20 but felt I needed a little more help. What I have been finding is that I have a lot of nocturnal hypos with them often with no evening Levemir. Not bad ones but I am often too groggy to wake up and deal with them. Sometimes the alarm goes off and I scan and go straight back to sleep without dealing with it. I do wake up when my body tells me I am hypo, so I don't feel it is overly dangerous and mostly my levels flatten out once they hit the red, but there has been a very notable pattern since starting taking them and I do find waking up in the night or in the morning, quite hard work. I have to set multiple alarms to get up in the morning. The benefits are significant though so I am persevering and trying to find workarounds with the nocturnal hypos. I have put on weight but I am not blaming the Amitriptyline, just carb creep with my diet and together with my higher fat intake it shows, plus I haven't been as active, so I personally don't think the Amitriptyline is a significant factor in stalling your weight loss for the gain that you get in respect of the headaches and ME/CFS. If the A is helping you to function better and be more active then I can't see stopping it will be beneficial, even just the anxiety that stopping it may cause, seems counter productive. Of course it is nice to think that we won't need these medications forever and I have had days where I knew I needed to be up early and alert and have just skipped a dose and some days I drop down to just 10mg a day for a few days, but I do feel that I am benefitting from the higher dose and at the mo, my GP is happy for me to adjust it as I see benefit in it. I can't imagine going up to 75mg or anywhere close but I might consider trying 30mg to see if I get any more benefit, but happy adjusting things between none and 25mg at the moment. My doc didn't seem to think there was a problem in just stopping them, but at the moment I am convinced that I am seeing a benefit and my friends and family can see a notable improvement in me as well as me feeling an improvement, so I would be quite reluctant to stop them at the moment myself.
Only you can weigh up the pros and cons of your situation, but my concern is that the weightloss service are conflicted in their advice to stop the medication because they are only looking at it from their perspective and may well have targets to achieve and might not be advising in your overall best interest. There was a time when medical professionals word was like "God's" but I think we now need to have a much greater say in our medical treatment and we all know that a lot of the medical advice members of this forum are given is seriously flawed or outdated, so it is down to us to empower ourselves regarding managing long term conditions. I am just pleased that the GP has given you the decision to make rather than just stopping them. It is not like they were not justified in being prescribed in the first place, so it is just a question of whether those issues have resolved and no longer need treatment. Only you will know that...

 

[s'nic]

Are either of the tablets the slow release type that deliver meds over time?
Also do either of them have half lives? If you are not familiar with half lives in tablets this explains them https://www.drugs.com/medical-answers/what-do-you-mean-by-the-half-life-of-a-drug-458946/

Even though the doc has passed the decision to you, you can (if you wish) still ask a pharmacist for advice in reducing them before stopping them. I'm thinking that a reduction first might be easier on your system.
Hopefully you can find a decision / solution that works for you

 

[Lucyr]

I was wondering what sort of dose you were on with the Amitriptyline? I have just stepped up to 25mg. I started on 10mg back in early December and the doc advised that the effective dose for anxiety and depression was 75mg. I am definitely seeing a benefit at 20 but felt I needed a little more help.

The dose for pain prevention and headaches is usually much lower than the dose for anxiety and depression. I was on 10mg for a year or so, but increased to 20mg about 2 months ago as I was starting to have a lot of time off work sick again with headaches that didn’t respond to painkillers.

After 2 weeks at 20mg there was some benefit - constant headaches but more tension headaches than stabbing ones. After 2 months at 20mg I’ve got to headaches being a couple of times a week and not ruling my life.

After last night doing 10 instead of 20 I was ok all day but lightheaded in the evening. I’ve taken 20 tonight, I might need to try 15 instead I suppose.

Im thinking of going for “checking what dose of A is the minimum I can cope with without being more ill” rather than aiming to stop it, as reflecting on the benefits it is worth it if it means I can go to work, walk to the office (I manage about 5k steps a day now), go swimming 1-2 times a week, etc.

 

[Lucyr]

Are either of the tablets the slow release type that deliver meds over time?
Also do either of them have half lives? If you are not familiar with half lives in tablets this explains them https://www.drugs.com/medical-answers/what-do-you-mean-by-the-half-life-of-a-drug-458946/

Even though the doc has passed the decision to you, you can (if you wish) still ask a pharmacist for advice in reducing them before stopping them. I'm thinking that a reduction first might be easier on your system.
Hopefully you can find a decision / solution that works for you

Neither of them are slow release but amitriptyline lasts weeks in your system and took about 2 months to feel settled on the full benefits of the dose increase. Propanalol is very short half life, starts working in an hour, the benefits last maybe 8hrs.

I think I can reduce the propanalol first more easily and just take it when I need it, as it kicks in so quickly. Never noticed any ramping up type effects with it.

 

[rebrascora]

I think that is a very sensible compromise Lucy.

 

[AndBreathe]

@Lucyr - are you being given any advice on how to come off these meds? I’m no pharma guru, and have never taken these meds myself, but I gather sliding off them, over time, rather than jumping off, cold turkey could bring a more comfortable experience.

 

[Lucyr]

@Lucyr - are you being given any advice on how to come off these meds? I’m no pharma guru, and have never taken these meds myself, but I gather sliding off them, over time, rather than jumping off, cold turkey could bring a more comfortable experience.

The advice I was given was to just stop amitriptyline first, no gradual reduction advised. Then to reduce and cut out the Propanalol.

 

[rebrascora]

My GP also told me that I could just stop my Amitriptyline whenever I wanted

 

[Robin]

The advice I was given was to just stop amitriptyline first, no gradual reduction advised. Then to reduce and cut out the Propanalol.

My GP also told me that I could just stop my Amitriptyline whenever I wanted

I recently Googled this for a relative who is taking it, and even the official NHS website says your GP will advise cutting down gradually!

Common questions about amitriptyline for pain and migraine

NHS medicines information on common questions about amitriptyline

www.nhs.uk

 

[Thebearcametoo]

I stopped amitriptyline without problems but then I had such bad side effects on it it was a relief to be off it. I’m on gabapentin now instead and for me it has virtually no side effects. It has a much shorter half life compared to amitriptyline. It’s worth talking to your GP about alternatives to fit your symptoms that are less likely to cause weight gain.

 

[Lucyr]

I’ve now dropped to 1 propanolol in the evening and not had the 2 in the daytime.

My anxiety has been higher but manageable I think, and my resting pulse is higher at 71-72 since reducing propanolol vs 60-70 normally. I’m not sure if that’s calculated during the day or at night which is when I’ve still been taking it though.

Amitriptyline I’ve started alternating 15mg and 20mg for now, with a view to trying a reduction to 15mg every day in a week or two.

 

[s'nic]

On my garmin the resting heart rate is calculated using the lowest 30 minute average in a 24 hour period (seems to me that means it would be calculated while you sleep?).
My average resting heart rate tends to be 44 bpm, Prior to beta blockers it was approx 50

That sounds hopeful, and a reasonable tactic, here's hoping it goes smoothly

 

[Lucyr]

Ah found the description, my Apple Watch resting heart rate is calculated during the periods I’m inactive. So I think that would include sitting at work etc not just when I’m asleep.

 

[s'nic]

The garmin calculation seems to work just fine tbh. My system runs slow ... this was stood up after walking downstairs one morning, pretty extreme oven for me lol. So an average of 44 resting is totally reasonable for myself