Does anyone else find Amitriptyline helps their pain?

[Runrig01]

I have been on Amitriptyline since the muscle pains began 2.5yr ago. I was on 10mgs for 4 months then increased to 25mgs after that. I am having many disturbed nights due to tongue pain and spasms, I seem to develop discoloured patches and clots on tongue at night. Whilst this is still being investigated 1yr on, my GP suggested increasing my Amitriptyline. When I don't have work the next day I have been taking 50mgs, and find the next day my PMR pains are greatly reduced and the fatigue has lessened. Does anyone else find this with Amitriptyline ? Thursday night I only took 25mgs and suffered all day at work with pains in the shoulders and hips, and exhaustion yesterday. Should also mention I reduced my Pred 10 days ago to 7mgs and muscle pains have been increasing day by day, persevering in case it is Pred withdrawal.

[PMRpro Ambassador]

Pain due to steroid withdrawal is more likely to improve with time than to get worse.

It is possible to have both PMR that responds to pred and something else that causes similar pain but which responds to amitriptyline - what is labelled as fibromyalgia being only one of several. When I was first suffering stiffness and pain it was difficult to draw a line between fibro and PMR - there were painful trigger points that matched the ones for fibro and PMR symptoms that didn't match fibro entirely.

In all these "possibly autoimmune" problems there is a massive amount of overlap - which you are labelled with depends on which particular symptoms predominate at the time of diagnosis. As I said somewhere the other day: you go into a cake shop, chocolate cake, fruit cake, sponge cake, coffee sponge - but they are all cakes.

It would perhaps be nice if the medics were prepared to be more flexible. If pred works: pred-responsive PMR. If it doesn't, try something else. After all - the primary objective should be quality of life for the patient.

[Runrig01 in reply to PMRpro]

Hi PMRPro, I have been tested for Fibromyalgia tender points several times over the years, and never have tenderness in the areas they test. Even before starting Pred, the Amitriptyline helped a little with the muscle pains. When Rheumy diagnosed PMR she told me to continue Amitriptyline as it helps pain in a different way. However it is only now that I have doubled the dose that I notice how much it helps. It may be I'm sleeping better and hence coping better with the pains. Hope to take higher dose when I'm working the next day, once I have less of the hangover feeling.

[PMRpro Ambassador in reply to Runrig01]

How very intriguing - you're the first person I've heard saying it helps PMR pain.

[trish29 in reply to Runrig01]

Good Morning runrigo O1. I am so pleased that Amitriptilyne helps you with your pain especially as you have to work . I have been on Amitriptyline twice during my PMR journey and it doesn't work for me .. It just drugs me up . I was taking 10 mg and was supposed to go up to 25mg , it seemed to work in the beginning but I was walking around during the day like a Zombie and I don't think it went well with the Prednisolone. Recently due to a Virus/Flare-up I have come off it again with my GPs permission but it appears at the moment all the pain I have been going through has developed into Shingles and I will be contacting my Surgery first thing tomorrow morning as it may be suggested that I have to go back on it. I have a friend who suffers with another condition who is on Amitriptyline 25mg and she does exactly what you do and takes more if need be . I am willing to give it another try after the Shingles gets out of my system. take care. trish29

[venezia1]

Hi - I've been on Amitriptylene for several years for restless legs and muscle spasms at night. I take 75mg on going to bed. I may be a bit dozy in the morning (but then I always have been!) but as I'm now retired that doesn't impact too much. I have no other recognisable side effects and it helps greatly to solve the problem, so I recommend it.

[mickt]

Im on 30mg nightly for diabetic neuropathy.Helps with burning sensation in legs and feet .I find it makes me sleep better .Pred keeps us awake ,been on amytripilene for 5 months now.

[polkadotcom]

This is definitely intriguing as I have now been on Amitriptyline (50mg) for about two years and it does seem to be the one thing which improves - or appears to improve - most of the pain I have. I've been prescribed it for Fibro, but I know it helps with my neck and shoulder pain. In fact about the only things it doesn't help with are my hips (probably bursitis and it's getting worse again). It is a muscle relaxant, so perhaps easing some of the pain caused by tension in the affected muscles is why it works?

[Runrig01 in reply to polkadotcom]

Hi Polkadotcom, I think you hit the nail on the head. Although it was originally used as an anti-depressant it has the effect of relaxing muscles. I'm finding on the day after I've taken 50mgs I'm coping better with the increase in pain I've had since reducing Pred to 7mgs. This is the lowest I've been on Pred, started 16 month ago, although had PMR for 14 month before that without diagnosis. Still waiting to see ENT about the tongue pain, spasms and discolouration, seen a neurologist recently who says it is possibly temple arteritis, so don't want to drop Pred further till I have answers.

[horas]

Hi runrig01, I have been on Amitriptyline for over 2 years now but I have only been diagnosed with PMR for the last 2 months after 2.5 years of suffering. I take 50mg at night and it defiantly helps with my sleep and pain. I found that as the day goes on the PMR pain just keeps increasing and by the evening time I could hardly move. I think that the muscle relaxing effect of Amitriptyline helps with the pain especially in the morning. It also helps a lot with sleep and I am sure the better quality sleep that we have gives our body's a chance to recover from the pain of PMR.

As for increasing the dose I have found that if I increase to 75mg it makes me feel drowsy most of the next day and it is much harder to function as usual, but there are occasions that the pain is to much to bare after a day of hard physical work so if I am not working or driving the next day I will take the higher dose just to get a good night's sleep which I think makes the general recovery from the stress and pain of work activity much quicker. Now that I have started on Pred I have not needed to take a higher dose of Amitriptyline as my pain level has dramatically improved but I still find that it helps with sleep especially the effects of Pred on sleep.

Unfortunately my job as a Landscape Gardener is very physical and at the moment I am really struggling with my dosage of Pred due to the differences in my day to day work load and physical stress on my body. My rheumy is trying to get me down to 9mg from 10mg. I find that on 10mg I can cope on easier days but on harder days I need to take 15mg to relive the pain. I am not sure if this fluctuation in dosage is the best thing to do so I am in a bit of a dilemma about this. I am trying to balance my work load but this is proving very difficult.

I hope that you soon get to see your ENT consultant and sort your problem out and feel better soon.

Thanks Horas

[PMRpro Ambassador in reply to horas]

Why is your rheumy trying to get the dose down to 9mg when you are doing well on 10mg? I was on over 10mg for most of the last 5 years until I was put on a different sort of pred - but the rheumy people here say "You need what you need" - I appreciate that a lower dose is better for us in the long term but when you are self-employed it is a whole different ball game because you HAVE to work to get an income. If you lose everything material because you are ill, being on a marginally lower dose to maybe avoid a broken hip in 20 years time won't have achieved anything positive will it.

[horas]

Hi PMRpro,I agree with you but the rheumy seems concerned with possible side effects of Pred. I have only been on Pred a short while and to me he seems to be over cautious and worried about side effects. I would have thought that concerns should come into the factor after many months of treatment not after 2 months. Like you I would like to control my dose by my degree symptoms. The one thing I am a bit concerned about is varying the dose day to day. When I work I need a higher dose to control pain but at weekends and when I am not working I can get by with a lower dose. Is this OK to treat myself like this or should I stay on a steady dose.

Thanks Horas

[polkadotcom]

Horas, it's definitely not a good idea to keep jiggling the dose; whatever your Rheumy says, you need sufficient to keep the PMR inflammation under control and give you the quality of life you need to manage everyday tasks.

Pred is not a pain-killer, it acts as an anti-inflammatory to dampen down the inflammation which causes the pain, it doesn't act directly on the pain itself. Jumping about on the edge of the dose you really NEED to manage will only confuse your body and cause more problems in the long run.

It always makes very little sense to me when patients are forced to reduce, it isn't about getting off Pred, it is finding the lowest dose which keeps all your symptoms under control. Any less than this and you are getting no benefit from the steroids, just the side effects and probably more pain into the bargain.

The side effects are generally marginal when weighed against quality of life, not to mention the damage which can be done by uncontrolled inflammation and the additional risk of GCA.

[horas]

Hi polkadotcom, thanks for your reply and advice. I think I will increase my dose and try to stabilise my dosage so that I take the same every day. By what I have read on this web site about other peoples experiances I think my rheumy is trying to decrease the dose far to quickly anyway. They don't seem to understand how much pain you can be in and it's very frustrating.

My thinking about dose adjustment was to do with days that I have a lot of hard and heavy physical work so my body is under a lot of extra stress and might need more medication. I am not really clued up on things medical so your advice is much appreciated.

Thanks Horas

[PMRpro Ambassador in reply to horas]

Now you have a diagnosis you don't necessarily need to see the rheumy. A good GP should be enough. If you have such a thing who will discuss management with you like an intelligent human being take this paper to them:

rcpe.ac.uk/sites/default/fi...

which is aimed at helping GPs manage PMR.

They keep patients at 10mg for a year before trying further reductions and reductions are done with regard to symptoms.

I have been on pred for nearly 5 years, a lot of it at above 10mg, sometimes at 20mg, I haven't fallen apart yet. My bone density is still the same near enough, I put on weight and had horrid side effects with one version of pred, have lost it with another and the other side effects have gone too.

There are 82 documented side effects of pred: no one gets them all, some get none. It needs to be monitored with diabetes and cholesterol checks and a dexa scan every couple of years but there is no point at all taking the patient off the only drug available to manage their condition just because they might develop something that can actually be managed as well.