I'm currently between appointments with my rheumatologist I'm due to be reviewed in a month or so. I have a few tests before a confirmed diagnosis but suspects sle and aps with secondary fibromyalgia.
He recommended to my gp either increasing my gabapentin by 100mg three times a day (currently on 200x3) but I was on full dose and decreased a fair few years ago. It's one of the few medications I've been able to decrease successfully and I'm reluctant to increase and go through that scenario again.
The other option was to trial amitriptyline and this is something thats never been considered so I'm intrigued but concerned because of my other medication and interactions although my current research shows it should be okay.
Can I have some perspective if possible on experiences with amitriptyline whether it's helpful, side effects etc or advice for considering taking it?
Thank you in advance for any replies
Written by
Ziggidy
To view profiles and participate in discussions please or .
Hi Ziggidy I have SLE and am taking Amitriptyline which I’ve been taking for last 15 years, I have chronic insomnia so take it to help with sleep , I’m on 100mg which is very high dose-I take it in one dose at about 8pm - side effects at first we’re very dry mouth but I no longer get this, for some it makes them feel groggy but I don’t get this either I’m also on gabapentin for hot flushes since I had hysterectomy 6 months ago I take 600mg x 3 times per day again I get no side effects on this.
I was prescribed amitriptyline a few years ago by my GP when I was struggling with tightness in my chest at night. I was waking up in a panic because I couldn't breath properly. When I talked to my GP she prescibed amitriptyline and I took it in the evenings before I went to bed.
Have to say it helped a lot, I could feel the muscles in my chest relaxing. There is a side effect of dry mouth and as I have sjogrens it was a bit of a problem. Later down the line in a rheumatology appointment I was offered gabapentin to replace amitriptyline which I take again at night, just one capsule to help with sleep and nerve pain. The rheumatologist wasn't happy that I was taking amitriptyline because of the dry mouth side effect.
On the chest tightness it transpired I have asthma and it took an asthma attack for me to get proper treatment. Its now well under control. So as long as the dry mouth won't be a problem for you amitriptyline might well suit you. I hope thats been helpful xxx
Hi Ziggidy 🤗I take amitriptyline at night to help with neuropathy..I'm on 20mgs and have been on that dose for about a year. Before that I was taking 10mgs..rheumy increased it saying I could increase more if I wished.
The dry mouth is an issue for me at night anyway coz I have Sjogrens so I take a bottle of water to bed n sip it during the night.
I take mine at about 6pm coz it did make me bit drowsy the next day. A forum member mentioned that she takes them twelve hours before she has to be awake. I took her tip and I wake up fine..well as fine as you can be with lupus that is 😹Hope it works for you 💜🌈😽😽xx
Thank you everyone for the replies, I think I'm going to get an earlier appointment with the pharmacist and give it a go, I do have a dry mouth but no harm in trying it 😃
After years of dry mouth, meds and sjogrens, I have in last 6 months, got 5 teeth with total wide “ about to break” bases/ gum lines. I always had good teeth!
So definitely think ahead on dry mouth symptoms and self care etc. a 6 tooth broke off last year at base. No idea how they will remove it.
None of it hurts( or we are so used to pain, broken teeth are nothing). Just a word of caution. I was waiting out COVID to get to a dentist since vaccines are so taboo for many republican Texans, even if it’s hurting others.
I've been taking 20 mg amitriptyline at night for over 10 years - it helps me sleep. It does give me a bit of a dry mouth and I do sometimes have weird dreams, but otherwise no issues.Of course everyone reacts differently to medication, so best to try with an open mind. I couldn't take gabapentin at all - I felt like I was on another planet!
Hi Ziggidy, yes I took Endep for a couple of years and it helped, but it does depend what it’s being prescribed for. Is it for nerve pain? I successfully treated nerve pain with Endep but we had to increase the dose to get that success. I stayed on it for a year to make sure the pain did not return, then I tapered off. I initially took it for anxiety and depression symptoms (a result of living with the complexities of lupus) and was then able to increase it when the nerve pain was diagnosed.
I had mild side effects of dry mouth and weight gain, which I was able to tolerate reasonably well. The dry mouth takes a little getting used to—I already drink bucketloads of water!—but it seemed to settle down after a while. The weight gain was a little freaky as I do not generally put on weight, and since ceasing the Endep the weight has not gone down—but neither has it increased any further. I’m now on weight control meds. Sometimes we have to medicate the side effects of the medication! 😖🤪
Hi, there is a new drug named Duloxetine and this is a game changer. I used to take tramadol as gabapentin was totally useless. I take 60mg at night and 20/30/40 or 60mg in the morning too at a dose that is relevant to my pain that morning. I have so far introduced to most of my friends who have various illnesses that cause long term pain that greatly affects their quality of life and all of them have had a positive reaction. I’m now able to do things I enjoy which had stopped as my illness progressed. A GP can prescribe this for you in general practice. On a more personal note I wish you Good luck on your journey xx
Thank you! I've been on amitriptyline since not long after this post, only ten mg I haven't tried higher as they recommended to save it for a flare up! It's helped me sleep better but not much else benefit although that has been big for me! However I've noticed the last few weeks it's not doing much better and sleep is going into old habits. I've just looked this up, I have never heard of it but I appreciate you telling me about it, seems promising and I've bookmarked it for future option! I have a follow up with a rheumatologist at some point but have no appointment as of yet! Hopefully soon but not betting on it.
Hey Ziggidy, good question! I took Ami for a while but not sure if it was directly for lupus, as it was for new nerve pain of unknown origin. Anyway, I took Ami for 12 months and it pretty much cured the nerve pain. For this reason, I happily recommend it to others.
I had a few side effects. The dry mouth was noticeable, even when drinking water constantly, so be prepared to feel dry no matter what you do. I also packed on the weight, even though I did not change my diet or lifestyle. The weight is very slowly coming off now, but it did take a while for it to shift after coming off the Ami. I had no other side effects.
One added benefit for me in taking Ami was its antidepressant properties. I had been feeling very low as a result of living with lupus, and the Ami took the edge off that. I still feel low, but I’m no longer bursting into tears on a daily basis. So there were added benefits for me there.
It sounds like you have a few things to weigh up with your medications, so all the best with it, and let us know what you and your doctors decide to do! 🌻
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Amitriptyline ?
Aaaaagh Grrrrrrr!!!!!
It May or May not Be Lupus
Amitriptyline for burning feet. Any side effects?
