Amitriptyline - your experiences please? - LUPUS UK

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Amitriptyline - your experiences please?

Rockhopper profile image
15 Replies

I've recently been prescribed Amitrityline for nerve pain arising from compressed vertebrae probably caused by long term steroid use?

Unfortunately after 3 weeks, I'm still not getting any pain relief but am experiencing plenty of nausea and constant fatigue?

Would love to hear others experiences of this drug - many thanks.

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Rockhopper profile image
Rockhopper
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15 Replies
MaximumRide profile image
MaximumRide

Hi Rockhopper,

I find it helps with pain, but not completely. I do get tired on them too. But for the extreme pain in my jaw it eases it enough to let me sleep.

Hope it sorts itself out for you 😊

Valbeasixties profile image
Valbeasixties

I have taken amitriptyline intermittently for many years when I have suffered bouts of depression. I have always taken it before bedtime as it has helped me sleep. Each time I initially experience side effects - dry mouth and feeling rather sleepy/spaced out - which goes after a few weeks but the drug does take a while to kick in. Do persevere for a couple of months to see how it goes. Good luck.

Hello Rockhopper, I have taken Amitriptyline, 20mg/day at night, for several years,for nerve pain down my leg, it did help, but I was constantly tired and fuzzy headed. My mouth would suddenly dry, and I literally couldn't speak because my tongue stuck to my mouth, and this always happened when I was trying talk.

I cut down over a week, and stopped them, but now my "frostbite feeling" in my feet has come back, however I do feel less drowsy. It didn't make me feel sick thank goodness, but I am going to see my GP to see If I can take a lower dose. I am diabetic type 2 as well as SLE.

I think you should see your Gp about the nausea, hopefully he can help.

Best wishes.

custardpot profile image
custardpot

I was on this for a few years but had to come off it because of another drug. It takes 4 to 6 weeks to have any affect. It does give you a dry mouth and can make you fatigued.

I must admit I have been better since being off it in that I am not thirsty all the time (while on it I was going through 6 litres of Squash a week) also not had to have an hour every day.

I must say though I have a lot of bad nights with pain.

All I can say is give it a chance and see how you feel after a few months. In some ways I wish I could still take it and in others glad I am off it

Ruth_lderry profile image
Ruth_lderry

Think they take a wile 2 go into ur system.. I use them 4 pain and restless legs and arms at night I got the best nights sleep, I take 30mg a night.. A sleep is the one thing I need as I have lupus as well so these r a great thing 4 me. Hope they start 2 kick in soon 4 u xx

jellynpain profile image
jellynpain

I am on amitriptyline and find it does relieve some pain, not completely though.

Importantly for me I take it after dinner, early evening. If I take it late it affects me am .

Hard for me to tell if any other downsides as could be amitriptyline or my conditions.

Xx

GloomyEeyore profile image
GloomyEeyore

Firstly I am without diagnosis. Being investigated for Lupus, Bechets or another autoimmune disease. I have been on amitriptyline for the past five years. My dose was upped slowly from 10mg to 30mg to be taken at night. I haven't experienced any side effects other than the tiredness but being taken an hour before bed this wasn't a problem. As for helping with pain relief I believe it must work as I no longer wake during the night. Pain during the day however is just as bad.

lorac1 profile image
lorac1

Hi. I was prescribed it for the same reason. I took it for 2 1/2 months and found it did not help with the pain. It also made me very tired up until midday the next day and I felt quite nauseous. The one plus for it was that although I still woke up during the night I went back to sleep more quickly!!

onamission profile image
onamission

I take Nortiptline for nerve pain it is the sister to Amitrityline they also use gabapentin that made me really ill

Whatamess2 profile image
Whatamess2

I recently was prescribed amitriptyline for nerve pain and insomnia. I started on 10mg for the month of January and I really struggled to function. I was sleeping all the time and had a hung over feeling. I then had to increase to 20mg in Feburary, wow I couldn't function at all, I couldn't think, all I could do was sleep.

I went to the doctor on Monday to report to him and he has reduced my dose to 5mg eg: half a tablet. Yesterday I had a stinking headache but today feel a bit better. Interestingly he said that some people are extremely sensitive to the drug and experience what I did.

He wants me to try half a tablet as it was originally proscribed by the rheumatologist for the above symptoms. No relief in nerve pain yet and still to get used to the dosage.

I have hypothyroidism and possible sjogrens.

Hope this helps. I would just say proceed with caution.

Regards xx

1977ok profile image
1977ok

I was on them. They didn't work for me, I have nerve root compression. I am now on pregablin. and it's the only thing that's worked

Elfie1 profile image
Elfie1

I take 20mg. Amitryptiline at night with no side effects at all, I suppose it may depend on the dose

misty14 profile image
misty14

Hi Rockhopper

What dose of Amitriptyline are you taking?. I too take it for nerve pain and have found it helpful with sleeping and pain relief. I take 20mg as had a very dry mouth, I couldn't speak properly it was so bad on 25mg. It's improved on the lower dose. Amitriptyline is a anti-depressant too which is helpful for us having to cope with so much!. You can be prescribed anti-sickness tablets that could help the nausea. It is worth persevering with it, may take longer to get the pain relief benefits. If you don't get the help from the drug might be worth going to a Pain Clinic. I've had a lot of help for my pain and they have access to different drugs. Hope I've helped?. X

USAhousewife profile image
USAhousewife

I have tried taking it 3-4 different times over the last 30 years. I've been on 3-4 different strengths. The only good I ever experienced withAmtriptyline. . . tossing it into trash :) Aspirin alone was much better for my pain, didn't make me gain a bunch of weight, feel lke crap, or keep me in a drugged fog.

HermioneG profile image
HermioneG

I haven't used amitryptiline, but I've have been using Lyrica/Pregabalin for compression fractures of lower spine also caused partly by high dose steroids for another disease, ITP. I have found it excellent although it does have unwelcome side effects, so I'm glad that I have been able to reduce the dose and hope to be off it in a couple of months.

I also took paracetamol - I can't take any NSAIDS because they thin the blood and I have a platelet problem.

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