Medication.

[Chancechance]

After going to the doctor's yesterday I was told that if you are on amitriptyline it can cause dementia, has anyone else been told this. I'm quite concerned as I've been on it since 2012.

[Nipper11]

Oh my god I hope not I been taking this drugs for years. I will research it on Dr Google. I let you know if I get any thing confirmed. Xx

[Nipper11 in reply to Nipper11]

Just taken a look and there is so much information linked to what your doctor said however you and I need to have a words with our GPS to found out the real side effects of the drug as there are many and i like to know why i wasnt told . I will take myself off this drug slowly starting today. Thanks for the heads up. I only take a small amount but not happy now knowing the risks. Take care xx

[desquinn Partner Volunteer FMAUK Trustee in reply to Nipper11]

Couple of things... Having words with your GP suggests they have withheld information and they have not as this is new and still developing research. Changing your meds without speaking to your GP and talking about the risks associated with changing them would be the best course of action. Making changes without this step would be ill advised.

Also read my other post on relative risk.

[Nipper11 in reply to desquinn]

Thank you for your information. I am seeing my GP tomorrow and therefore will talk through the risks before I make a decision. I have come off three pain killers this year due to the long term side effects and therefore ready to review. My health is improving and have taken to other steps to support my pain levels. They do not always work however my mind is much more alert so that's good news . Take care xx

[desquinn Partner Volunteer FMAUK Trustee]

Please do not make any medication changes and speak to your GP about other options. The appreciable increase in risk is 1-3% over 15 years. So You have an additional 2% risk beyond your existing age based risk.

Every medication has a potential risk factor and these early studies are still trying to work out confounders and and reasons for the potential action.

" A typical patient aged 65-70 might normally expect a period incidence of dementia of around 10% over the next 15 years,36 so this odds ratio would be consistent with an absolute risk increase of 2% (1% to 3%) over that period, corresponding to a number needed to harm of 50 (33 to 100). Possible explanations for our findings are that other actions of specific groups of anticholinergic drugs may underlie observed effects, or that the drugs are markers of prodromal symptoms or dementia risk factors. Alternatively, the class specific association we have observed may reflect a difference in the ability of different groups of anticholinergics to cross the blood-brain barrier."

[Cat00 in reply to desquinn]

Thanks Des!This is something I freaked out about years ago, as they said Amitriptyline causes cognitive decline. My neurologists said the lack of sleep I go through without it gave me a higher risk of decline than the Amitriptyline so I should stay on it, but its good to see those numbers again. I would have thought living a sedentary life would give you a much worse percentage risk of developing dementia, probably drinking alcohol or living in London....that sort of thing?

[PuppyPenny in reply to Cat00]

I've just started on amitriptyline. I was on 10mg for a month, I have now gone to 20mg. My Dr said that I should increase to 30mg after 2 weeks. As I'm already struggling with severe memory issues I am not really comfortable in taking more. I must admit, I slept better on 10mg. 20mg gives me extreme restless legs, it's getting a little better now after almost 2 weeks. How many mg are you taking?

[Cat00 in reply to PuppyPenny]

I'm on 100 mg, chronic pain/gastro issues tends to be a lower dose, I'm on it for chronic migraines, doesn't help the migraines but does help the sleep! I've been on it for over 10 years, I already have memory issues but that may be my ADHD that I was diagnosed with last year, that and lack of sleep, its hard to attribute memory issues to any one problem I have, it's probably a combination..

[Bacaloca in reply to Cat00]

i take topiramate for chronic migraines, used to have at least 5 a week which meant i was almost always in bed and being sick, my whole week was taken over by this. i have been on topiramate for about 5 years now and in the last 4 and a half years i have not had a migraine.

gentle hugs 💜

[Cat00 in reply to Bacaloca]

Sadly I've tried Topirimate, I think last time we checked I'd been on about 15 or so different meds for migraines over the years, I'm still chronic.

[Chancechance in reply to PuppyPenny]

I'm taking 50mg and have been for the last 6 years.

[Hidden]

I’m not surprised at all, same with duloxetine they will happily prescribe it to you but won’t mention about black box warning! Switching myself to natural medicine, is way to go for me

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

This argument constantly confuses me. Nightshade is deadly and at Johns wort can be bad for you. When water can kill you if you drink too much. "Natural" medicine on the whole will have fewer clinical trials and less warnings about side effects. Yet homeopaths and others will happily sell it to you without any warnings but happily take your money.

Okay some of this is tongue in cheek but the argument is a bit silly imo

[Hidden in reply to desquinn]

Are you GP or something ? Constantly dismissing me and my point. If you believe in big pharma that’s up to you, but stop spreading nonsense that all those drugs are ok to take for years, so many people developing different illness due to side effects of another, and then „ doctors” prescribe more meds to treat that illness if was caused by side effects of the previous medicine, are you following ?

Let’s just agree to disagree and good riddance

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

No I am the chair of FMA UK and do feel it is best to give a balanced approach on things hence why I have led comments both in support and countering posts about this research.

Also, I was not dismissing you and it is the only post of yours I can remember responding to. I am not spreading nonsense and I am not not saying "all those drugs are safe to take." Any substance you ingest has a risk attached to it. And it is best to talk to the doctors and make a risk based decision on what is best for your situation.

I am also a moderator on this site and attacking me with comments rather than my argument is just rude. My comments were not about you but about your post.

[Hidden in reply to desquinn]

It was directed to me, dismissing! Twice!

Block me or whatever you want, I don’t care, I haven’t learn anything from that forum that would help me in anyway. That’s why taking holistic approach and connecting with people that suffer the same way have thought me that natural stuff are the way to go with fibro! And no I’m not talking about crap you can buy overcounter 😊I will do you a favour and take myself out of this group.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

I know you have left the forum and I am sorry for that. However, there is a difference between "I disagree with your conclusion" and "You are talking nonsense." The second is attacking the person and the first is in respect to your opinion or post.

And again for anyone reading this my comment was not dismissive of the comment or opinion but I was disagreeing with the premise that all doctor prescribed drugs are bad and all natural products are good train of thought.

[Bar123ney in reply to Hidden]

hi what is black box warning. I have been given this medication but haven’t taken it yet. But my headaches and fibro fog getting worse and I don’t know what to do.

[Sarahvit]

Hi Chance, no amitriptyline doesn’t cause dementia. I have been on it since the mid 90’s and just saw my new neurologist last week. She said my brain MRI shows no signs of atrophy, dementia nor Alzheimer’s. Both my grandmothers had dementia and my mother had Alzheimer’s so this was a concern of mine. I never was told Amitriptyline caused dementia. The only thing I experienced was it caused tachycardia just walking across the room my heart rate was 130. After going in for EKG the doctor told me to stop taking it until my heart rate dropped back down. I was on 100mg so long story short I only slept 45 minutes that night. Consulting a pharmacist I learned that amitriptyline isn’t a medication to stop could turkey. You have to wean off of. So I took it the next night slept through the night. Heart rate dropped down not too long after that.

[desquinn Partner Volunteer FMAUK Trustee in reply to Sarahvit]

That's not a good conclusion either. Some may have a slightly higher risk of dementia when they take amitriptyline and that risk increases the liner they take it. But there are confounders but it does confuse and back up the higher risk.

[Dizzytwo in reply to Sarahvit]

Hi Sarah, don't wish to sound rude. But side effects do not effect everyone . I have no idea if these pills cause dementia or not. But one person's experience of long term side effects of any meds . Good or bad should never be taken as been written in stone. All meds in my personal opinion should be taken with caution xx

[Sarahvit in reply to Dizzytwo]

Hi Dizzytoo, everyone responds differently to each medication. For example CBS gummies I have a low tolerance 70mg puts me in a “bad high” but my daughter 400mg doesn’t effect her.roboxin is another one that knocks me out. It is a great sleeping pill. Soma worked great on my muscle spasms but a lot of people don’t tolerate it well. I am about to doze off so will say good night. I didn’t take what you said as rude. You are good.😊

[Dizzytwo in reply to Sarahvit]

Hi Sarah,exactly everyone reacts differently. I just thought that was a bit of.a blanket statement to say because its not caused you problems thus far that the medication definitely does not cause dementia. I don't know if it does or not but I think It would be bold of me to make such a statement based solely on my own experience. I sincerely hope the medication continues to give you and anyone taking it the help you need xx

[redkite55]

Hi, both my mum and my brother were taking amitriptyline My brother was on a high dose for his MS but was very mentally alert before he died in 2019 from pneumonia. Mum took hers for polymyalgia and was on a much lower dose. She was fine until she had a fall and broke her pelvis, after a 6 week hospital stay she lived at home with carers 4 times a day but never got out of bed again. I visited every day for 6 months and could see the decline in her mental ability. Her Dr did the alhziemers test, which mum failed. 2 weeks later, Mum died in her sleep at age 81.

Not sure as this answers your question really apart from mum may have got alhziemers in her old age anyway, my brother was on the tablets and at a much higher dose for many more years than mum was. I do know that neither had been told about that side effect, but then if it's new, they are probably still doing research.

I would definitely speak to your Dr before coming off any medication though.