I vaguely recall reading about how some members experienced some pain relief from particular antidepressants and/or anxiolics. Can anyone tell me if there are particular ones you are aware of used successfully for pain management?
I am in my 4th year of PMR. A few setbacks. Suffer insomnia terribly. Took zopiclone which gave me 6 hous sleep and really helped stiffness. Not a great drug to stay on for many reasons. Current using DL taper and am at 3.mg pred. I think there are alternative drugs to help me sleep and relieve pain.
Find this forum a life line. Changed my treatment and my outlook. Many thx.
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Amitriptyline and pregabalin or gabapentin are the ones you are thinking of maybe? They are used for nerve pain nowadays However - PMR is not generally nerve pain and whether they help the PMR pain is doubtful.
Many find amitriptiline helps with insomnia but I'll leave it to them to say how they get on with it.
Duloxatine has helped me or maybe just gave me a better attitude. Im not sure. I am down to 1 mg of prednisone. I started at 20 mg in September of 2017. Im a long timer!
Hello, it depends very much what the cause of the pain is; anxiolytics are not going help every type of pain. Have you got a diagnosed cause at the moment? What is your PMR up to? How is life during the day?
I get the stiffness commonly associated with gelling. If I remain sedentary for 5 minutes, I have pain on commencing motion. It goes away during the day quite quickly, but at night it keeps me awake, along with prednisone which has always drastically altered my sleep. I function well during the day. The tapering schedule seems to be working well.
Sounds quite PMRish. If that is the case, only an adequate dose of Pred will help because it is a powerful anti inflammatory. Anxiolytics and the like won’t help that and you do need to keep on top of that inflammation. People here have used them but for other issues going on in parallel that are not PMR. Saying that some do use Amitriptyline to help the insomnia from Pred quite well.
I agree with Snazzy - there is a good chance your problems are due to an inadequate dose of pred. You must get the inflammation under control properly which probably means more pred and you may do better with a split dose so that the antiinflammatory effect lasts the full 24 hours which it sounds as if it isn't.
The usual suggestion is to try 2/3 of the dose at a suitable time in the morning and then take the other third sufficiently later to extend the effect to 24 hours when the next morning dose is due. Even lunchtime can be late enough and it still allow enough time for the pred to be out of your system before bed so you sleep better - hopefully!
I really think you should talk to your doctor about your drug relief for pain and insomnia. On this board we are not trained in the use of drugs. We can tell you the effect they had on ourselves, but we cannot suggest something for you.
Understood. Just wondered if anyone had experiences with a drug that could inform my conversation with.my doctor who would have to prescribed. As we know many of our doctors have little experience with this disease and.shared experience can educate and inform the discussion. Thank you.
I really think we should leave our doctors up to choosing what drugs to prescribe. It really is not up to us to make suggestions to our doctors in this area.
Agree to disagree. We are all here to learn more about this illness. The experiences of the people here have greatly informed my discussions, her learning about PMR, and our continuously evolving care plan.
I too have had an awful problem with insomnia caused by the Pred.
In the first 8 years or so, I took Amitriptyline which helped a lot but did have some side effects, dry mouth being the worst. That seemed to stop working a couple of years ago when I was getting up to pee every 2 hours and having trouble getting off to sleep. I tried Phenergan which wasn't great and then consulted with a sleep clinic. They delivered the "gold' standard treatment of CBT for Insomnia. This nearly finished me off! The regime was brutal, gave me a massive flare and made me really anxious. Maybe it didn't work because it was medication causing the problem?
For the last year, I have been juggling a few kinds of pills because they all stop working after a while. I have found Melatonin pretty good most of the time, if a little unpredictable, and also Zopiclone and Zolpidem. In the last few weeks, none of them have been working very well so my sleep has suffered. I tried without any drugs last week and had 3 OK nights but then again started to take 3 hours or more to get to sleep which I hate, also waking up 4 times in the night and waking up too early.
I find it hard to believe that the medical profession have not found a sleeping pill that can be used long term for those of us who are really suffering.
I really hope that you find something that works for you!
Yes, they don't recommend it with auto immune conditions because it hasn't been tested on them but I asked my Rheumy and he said he couldn't see a problem and I haven't had any problems over this year except when it hasn't worked ! Here in the UK you can get 2mgs on prescription for 13 weeks if you are over 55 I think. That worked for me initially but not so much now. I am always experimenting!!
Seems strange actually since steroids reduce the melatonin level which is what causes the sleeping problem. What drives me nuts is that I will have occasional nights when I get into bed and know instantly that this is going to be a bad night and I won't sleep until between 2 and 3am! If it were every night I'd put it down to pred - but it isn't and in fact I had fewer problems at higher doses of pred!!!
I was told the other day my friends daughter is buying Melatonin on line to give to her young daughter so she herself can get some sleep without her daughter waking her up!...my friend is worried about this......
Not surprised - I would be. How old is the child? They do use melatonin on script for certain problems in children and teenagers, usually together with training programmes. She is playing with fire there and if the child not sleeping is a problem, she needs to speak to the GP. She has no idea what she's getting off the internet.
I agree, not sure how old, but under school age. My friend asked how do you know what dosage to give, she said her daughters friend gave 1mg to her very young child so she doubled the dosage because her daughter is a bit older! My friend told her daughter what she thought, wouldn’t take any notice! Very worrying.
It's another one of those metabolism pathway interactions as far as I remember. You shouldn't take Melatonin with Corticosteroids because higher Melatonin levels can also reduce the efficacy of the steroid itself.
There's so little consensus on Melatonin supplementation and which dose to use it's a hard one to really discuss.There appears to be a lot of sensitivity around taking it within certain age and health groups even if Melatonin toxicity is considered low chance or rare.
It isn't allowed to be sold OTC in the UK because of the chances of side effects and affect on symptoms that melatonin can have on people with various chronic health conditions and it's effect on the effectiveness of medications if the dose is not carefully calculated.
So , at the moment anyway, it's not a supplement I'd want to experiment with .
Plus , the very few research tests they've done don't seem to show significant or long term results , and it can cost a lot to purchase.
That is interesting. ITC here and pharmacist assures me it is harmless. UK is very much ahead of Canada in health care. I will hold off melatinin. It is a delicate balance, staying even keeled through this journey. Not the time to be adventurous. Thank you.
To be honest , if you can drink milk. the Sleep Foundation and other research proved that warm milk , preferably dairy including lactofree, but also almond or oat, with a little honey an hour before bed helps improve levels of Tryptophan and naturally improves Serotonin and Melatonin levels to help people get to sleep quicker and rest longer.Nit adventurous but might be worth a try!
My OH hadn't been to a GP for about 40 odd years, two years ago he was awake for a fortnight, no way could he drop off to sleep, not even in the evenings li ke he always had. He told me he wasn't going to live like it anymore!....so I got him an appointment with our GP, he told OH little is known about sleep!....he was prescibed Zopl icone, didn't work, he has for the last two years taken Matarzipine 15mg, he gets about 6/7 hours a night, he is happy with that....I now have a niece not sleeping, she has been prescribed an anti-histamine because they make you drowsy. It seems to be trial and error because li ke the GP said, they know very little about sleep!
This sounds like me exactly !! I always say i wish someone would come up with a safe wonder drug to help you sleep, i can not remember the last time i had a whole night sleep ! Up through the night with pain and going to the loo. Really starts to get you down. I just dont fight it anymore and except that a cant sleep and enjoy the small periods that i do. Good luck if you find anything keep us posted. Best wishes Viv.
I'm like you. I have to get up at least once every night to go to the loo. Also, I often find that I can't sleep when I get back to bed again. However, I have found that the quickest way for me to drop off is to try reading. That is guaranteed to send me into the land of nod within minutes.
I sometimes wonder if the old remedies are the best? Do you remember when in the US back in the 50's, they used to send their children to bed with a glass of warm milk and a cookie? The combination of the warm milk, and something to occupy the digestion seemed to work getting over active children to relax, and I wonder if we ought to try the same thing?
I find listening to a good pod cast relaxing and you can't beat a nice cup of Ovaltine etc, otherwise I don't fight it , I find that really stressful ! It's nice to know your not alone .Thanks for replying.🌹
Definitely, talk to your GP.Most antidepressants etc. help with neuro pain conditions , like Fibro or various types of Neuropathy, which you can suffer from at the same time as PMR , especially if you've become less active , and steroids don't usually relieve.
Tension and increased physical symptoms of Stress or Anxiety or Poor Sleep can also increase Neurological Pain and might need short term courses if these drugs until you have settled the causes of the symptoms.
They most commonly try Amitriptyline first , but this seems to be very hit and miss for people with chronic pain. Some do well , others , including myself , can't sleep, have a quicker heart rate and then get more pain , so it's important to decide on that depending on if you have other health conditions.
Anti epilepsy medications can sometimes be used , but again can need care.
After AmyT they often choose Garbapentin.
If so , request to start at a lower dose ( half) than what they would eventually want you to take each day, as it can make you feel spaced out if you just jump on to it or if you dose is too high for you,
It's actually better to taper up to the recommended dose of many pain medications and drugs unless they are for urgent medical treatment .
Garbapentin can cause constipation and require higher doses than Pregabalin which is virtually identical to it but more efficient and causes less stomach side effects. Often they try Pregabalin after Garbapentin if it isn't successful, personally, from my experience I'd say you are better off requesting to try this one first instead.
Again tapering up the dose over 2-4 weeks from half of what will be you daily dose.
Duloxetine is a good option in low doses for Neurological Pain over other antidepressants and muscle relaxants available . It is prescribed for various types of neuro pain including everything from neuropathy to bladder problems and so shouldn't be thought of with stigma.
In fact any antidepressants should not be avoided if offered for pain just because of its name. Most are prescribed " off label" for pain and relaxation more often now than they are for Depression so as long as they can be taken with your other medications they are worth carefully trialling.
Getting your nerve pain treated as well as your inflammatory pain with steroids can be the last piece in the puzzle to your Pain Management and be the thing you need to improve your Quality of Life.
Getting referred to the Chronic Pain Management clinic can be key to getting things right. They also help to prepare your body better for sleep.
Depending on which medication you take ( you must take care if you are on certain blood pressure or heart medications or have low blood pressure and low heart rate problems ) Active Magnesium taken after your evening meal can help reduce nerve pain , promote sleep and aid restless legs and peripheral neuropathy.
Nutrition Geeks Magnesium Glycinate 3-1 is a good all round option which can also help with GERD without causing diarrhea, it's available on Amazon, but check it against your illnesses or other medications before trying a supplement.
Increasing B Vitamins , Vitamin D and Folates in your daily diet also help with symptoms.
Many people , including myself , find that low doses of various medications work better together to control Nerve Pain than one high dose medication because they help different causes of the pain. It can take some time and trial and error to get this right. I , for example , take very low doses of Pregabalin, Duloxetine and Paracetamol to help control my Fibro and Nerve Pain.
But they only work well , if you combine them hand in hand with important Self Care changes too, like Pacing your Daily Activity, Gentle Exercise , Light , Nutrient Rich Diet, Good Sleep and Relaxation and good Hydration.
Just as you need to do while coping with PMR and taking Steroids.
Good Luck with finding what works for you , you will get there , Bee
I have lupus and other AI diseases. Sleep was difficult for years before ( I dislike long stories unless you want the details so this is condensed) venlafaxine was raised to 225 mg for my Erythromyalgia
Gabapentin for spinal nerve pain, the greatest someone mentioned above/ mirtazipine at 15 mg off label acts more like aa strong antihistamine. I get 7 or 8 hours sleep. A friend in France ( I’m in US)recommended it during my first bout of Covid when insomnia was awful. Anyway my doctors have no problem with it at this low dose. I’ve discovered a magnesium cream I rub into my knees and feet. Also, bone broth or chicken broth is high in tryptophan and never fails me. Best to you.
I have a trapped nerve in my back which causes nasty pain in my left groin and the front and side of my left thigh. My Dr prescribed Amitriptylin 10mg, one to be taken at night. The second night I noticed I was getting palpitations, so am going to ask Dr about that on Monday.
I’ve been on Amitriptylene for about 10 years, it was prescribed by a rheumatologist for my sciatica. It definitely help me sleep as occasionally I’ll still be awake at 2am then realise it’s because I’ve forgotten to take it. The bad news is it did nothing to help with my PMR when I started getting symptoms 15 months ago.
I agree with others that it sounds like you’ve tapered your pred below the amount you need to control your symptoms.
This is such an interesting discussion. I take Amitriptyline for nerve pain. It doesn't make me sleepy but can give me a "hangover" feeling the following day. I usually take it about 7pm and then it's undesirable effects are gone by the next morning. It does help my pain though.
I have had disturbed sleep patterns for years. I don't refer to it as insomnia because I do usually get 7-8 hours sleep in a 24 hour period. Just not necessarily consecutively or when I would prefer it to be!
I cannot blame prednisolone for it though as I was like it prior to starting to take it.
I have been diagnosed with Seasonal Affective Disorder, probably had it since I was 14 and I am pretty sure that this is the root of my sleep patterns. In the winter I could sleep any time, fall asleep anywhere, in the summer I am awake for hours. The winter sleep is not the refreshing kind, more akin to fatigue. My circadian rhythm is out of whack!
I take Sertraline as a treatment for this condition as it's thought to be a serotonin insufficiency. I also take Tapentadol as my main painkiller for the non PMR conditions. My Rheumy choose this drug because it also has an effect on serotonin. On top of this, in the winter, I use a light box. 10,000 lux for at least 30 mins before noon. Been doing this for about 20years. All of this keeps the depression at bay and helps to stimulate serotonin. However, it probably contributes to my weird sleep patterns.
The thing is, now I am not working and live alone and have few responsibilities, I don't really worry about sleeping. I am in a routine which works for me and the less I worry about sleeping the conventional 8 hours at night, the more I am likely to do it! I have also found that meditation helps especially when done in those early morning hours.
I know I am lucky to be able to manage my life around my weird patterns but the less I worry about it the better I sleep x
"In the winter I could sleep any time, fall asleep anywhere, in the summer I am awake for hours"
Must have a lot of Scandinavian genes - many of them do live like that, sleeping a lot in winter when it is barely light at all and up half the night in the summer when it never really gets dark.
Before I got my PMR diagnosis, I was desperately searching for anything that could possibly give some pain relief. I came across a study that said that 25% of people got some relief from chronic pain from low dose (10-25 mg) amitriptyline. So I asked my Pain Dr to try it, as another "shot in the dark" for me. I honestly do not know if it's helping, but I think it helps my sleep a bit so I am staying on it. I am only on 10 mg, which really probably isn't enough for me - I am quite tall and also heavier than I was when young
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