Hi its trish 29 here and I had a meeting with my GP today. He's not too happy that I'm not down further on the prednisolone . I'm on 13_14 mg a day . I've come down from 16.05 mg through the year. I have had PMR for nine years . I have also got osteoarthritis in my spine and left knee. Can't walk at all . Just a few steps with a mobility walker and I have a Mobility Scooter. He has asked me to contact my Rheumy with trying to get a new appointment as I'm not booked in until December. My Gp has asked me to ask fellow PMR members if anyone takes AMITRYPTILINE to help them get off the steroids ? I have taken them in the past but I remember they made me feel quite YUK!! Gave me bad heads and I felt sick but maybe I didn't take them long enough. There is some good news my x/rays came back clear on Osteoporosis .. Shows that my Calcium VitD and K works after all these years. Any replies I will be grateful. Thanks trish29
Amitriptyline- Any side affects?: Hi its trish 2... - PMRGCAuk
Amitriptyline- Any side affects?
I've been taking Amitriptyline for about 18 months now and I've had no noticeable side effects at all. They certainly do help me sleep and they help with the nerve pain I get in my legs. Although I have more mobility than you do - I can manage quite well round the house and garden but use crutches when out - I now find that the distance I can walk gets less almost on a daily basis, so don't know for how long I can keep going without some form of walking aid.
Good to see that the osteoporosis is under control, I've just had a DEXA scan and am waiting on results.
Thank you polkadotcom. for your comments. It has taken about a year for me not to be able to go out and about as I used to. My mobility walker is very helpful as it makes me stand up straight even though I can only take a few steps at a time . It takes the pressure off the spine more than my walking stick . I won't give in and I will try anything again just to be able to walk. Thanks for your support. trish29
Hi Trish29,
I was started on Amitriptyline about 2 year ago for my muscle pains, which were diagnosed a year later as PMR. My Rheumy told me to stay on the Amitrtiptyline as it would help the pain in a different way. I have on 2 occasions tried to reduce the dose with a view to wheening off, to assess if it still works. But I have found after 2 days of 1/2 the usual dose the pain and stiffness increases, so have decided to continue for now. I am on;y 48 years old and have to still work full time, so coping without was not an option. Like Polkadotcom I find them very helpful in giving me undisturbed sleep, prior to them I used to wake every time i needed to turn, due to the pain. My Rheumy allows me to take some Diclofenac to help during the reductions, which does seem to work, you have to be careful though as they are hard on the stomach and when taken with Pred the risk increases. I try to only take one a day.
Hi runrig,i to have been put on amytripelene ,on 2 tablets nightly 20 mg,for gp says diabetic ..im type 1...and vasculitic neuropathy .Was getting bad pain I legs and a burning feeling on soles of my feet.Pills seem to have done the trick.Your right they make me sleep better also ,im on 25 mg of pred at moment.Ive symptoms of pmr and gca.Like you im of working age 50,and will need something to be able to cope when I eventually am fit enough to get back to work.The key is as long its making our quality of life better ,especially having to work full time.I say the same about the steroids ,hate the damn things but better than been blind,which was my other option.How much pred you on at moment runrig.?
Hello RunrigO1. I really feel for you with so much going on pain wise and maybe the Dicoflenic works for you but I've always been warned not to take it as it can cause stomach bleeding and ulcers but you are a lot younger than me so maybe that risk doesn't apply to you. No matter what we take there is a risk and we have to have some form of everyday quality of getting on with our lives. All best wishes and thanks for your comments. trish29
Hello Trish29
Never had it to get off steroid as it was prescribed by GP before I went onto that thug drug. It was given to me to help me sleep and the GP said it can help with inflammation. I didn't find it did anything on that score - and I could only tolerate a half tab - any more and I was like a zombie! Eventually came off it, as it was holding me back, in that it really affected my memory and concentration. I could not have worked or driven whilst on it. Felt tons more 'alive' when I got off it - even just that half tab (I'm sensitive to chemical drugs). But I'm still grateful for the sleep it gave - sleep is such a help! I am on Methotrexate to replace the steroid, which, or course, has side effects, though not as bad as amitriptyline to cope with - you have to have regular blood tests whist on it to check the liver function. Meths seems to the type of drug that Rheumatologists go for and I believe there are other products in the same 'stable' if you don't get on with the Meths.
Fantastic news re the osteoporosis!! That's really heartening. Well, at least one thing is going sort of right. Sigh..... now all you need is to sort the others (we all wish...).
Good luck!
Hello Green girl.. Thanks for all your information ..you have described how I remember feeling when I was on it for that short time but I think it takes a long time to kick in with any benefits? Sleep is so necessary for us and pain certainly stops us sleeping. I am so concerned that we have to be weaned off all these drugs but I am assured by my GP that the steroid is definitely the more harmful When I was on Methotrexate before I had blood tests but I don't think they were done frequently enough and in the end I was taken off of it because it was affecting my liver. I will just hope that I can get some new advice from my Rheumatologist . I have also had Salphasalaziene in the past but due to a very sensitive stomach I just struggle to tolerate these medications. Thanks for your comments and I hope things improve for you . trish29
Ah - so you have met with Meths!! Sounds like your health people are trying to dig around to find something to help you - but sadly they only have very blunt instruments available...... One chap I have spoken to likens steroid to a cluster bomb in its effect. Too right! Amitriptyline did take a few weeks to settle down - well as much as it was ever going to do. Have you looked at your diet by the way? Do you take other vits/minerals besides D, K and calcium? There are other good things - and not having caffeine or sugar. None of these will make an immediate difference but overall may lessen pain - although osteoarthritis is a very severe condition, so maybe you don't find they help?
I hope you do find something to help you - and that you improve too! I'm on the food supplement trail to combat Osteoporosis and am much heartened by your success - I'm sort of dreading the DEXA scan when the next one comes around......
Hi Mickt,
Agree have a love hate relationship with Pred. I work 12.5 hr shifts on a busy ward and before Pred struggled with everything daily. I am currently on 9mgs, have got to 8mgs twice and had PMR flare and I also have a lot of GCA type symptoms which become intolerable at 8. I have burning temples, jaw cramping, tongue pain and it twitches and clicks at night. Then in the last few months have also had a "pulsatile tinnitus", basically hear my pulse thumping all night in left ear. Rheumy says impossible it's Atypical GCA due to my age. Slowing down taper till I see a new Rheumy end of Nov. They all say "not under 50" yet 6% of the people using the site were diagnosed with GCA under 50!! I have a very supportive team that has enabled me to work, except for a 2 month period in May/June. Hope you recover to get back to work. Take care 
HI runrig ,im on cusp at 50,they still say ive giant cell vasculitis ,even tho I could have lost eyesight and after pmr symptoms for 4 weeks before transient sight los in left eye,was in hosp on iv pred to save sight.Reduced from 80 to 20 pred in 6 weeks got bad double vision 20 times a day.back o hight dose pred hoping that cyclo treatment helps.on 25 now til next infusion.Ill not be happy til under 20 with no flare,you sound like you've a good support team at your work.Ive an occ health physician and a hr officer visiting my house in a week,so hoping it goes well.No more night shifts for this man tho ,my manager making the right noises.I do manual work the way I freel at moment ,got little strength or stamina .I live in hope that I find some from somewhere.You take care too...
Hi Runrig,
I was a bit relieved to read that you have "pulsatile tinnitus" - not that I would wish it on anyone! But it started a few months ago and I'm aware of it whenever I'm not talking, or doing something to take my mind off it - quite alarming at times! I looked the symptoms up on the internet, which is how I found out about it. I've just written to my Rheumy about it as I'm not due to see her for another two months - how fabulous that yours says its impossible....I sometimes wonder about the people who are treating us! I'm currently on 15mg trying to get down to 10mg for a hip operation, but every time I drop below 15 the symptoms of GCA get bad again. I'm astonished that you can work with it, and full of admiration.
venezia1
Hi Venezia, my GP says the "pulsatile tinnitus" is a sign that there is problems with the blood flow in the carotid artery, and can be a symptom of GCA. I work non a ward where we do hip replacements, you will be surprised how quickly you recover, and get on your feet. Hope you don't have to wait too long, could not do my work without the supportive team I have, there are days though when the pain is unbearable and i disappear to have a few tears. Take care, Runrig x
I was prescribed Amitriptyline. I tried it 2 or 3 times but although it helped me sleep and helped alleviate headaches, I was like a zombie. It was such a relief to stop it each time.
I don't react well to drugs anyway.
I don't think I will try again. I have been prescribed hydroxychloroquine now. Again side effects are a problem.
My husband, who does not have PMR, was prescribed Amitryptiline a few years ago for poor sleep patterns and restless legs at night. He hated taking it as it made him feel like a zombie the next morning. The after effects were worse than the problems and he stopped taking the. Sleep patterns had become worse again and the GP suggested he tried it again, with no advice as to when they should be taken. When I collected the prescription from the pharmacy I was told that he must ensure that he takes it at least 12 hours before he gets up in the morning. He took the advice and it works well with no zombie effects. I would say definitely worth a try!
Thank you bibifleur.. It's amazing how sometimes we get more advice from the Pharmacists than our actual GP's.. That's interesting about taking the Amitriptyline 12hours before you get up and it makes good sense.. It would clash with my evening blood pressure tablet but that could be another question for the Pharmacist . I am so scared to take any of these powerful drugs but I will go on the advice of my Rheumatologist. Thanks again trish29
Thank you Everdean for your reply .. I've got a lot to think about . I remember that Amitriptyline made me feel really yuk!! I'm waiting on my Rheumatologist to get in touch to see if I can get an earlier appointment than December.. It's all such a struggle. Oh for that Magic Wand !! Best wishes trish29
I should have said I was instructed to take amitriptyline at about 6pm at night - it's worked well for me, no zombie problems. I thought this was a standard instruction but it's another thing which surprises me as it gets lost somewhere between the doctor and the pill!
Thanks polkadot. Everyone is so kind on this Forum .I've learnt so much more about PMR since I joined PMR/GCAUK and I've just found out about 2more medications that I didn't know about so I will write them on my list for my new Rheumy appointment. I will try anything to get better and that's exactly what I've been doing for 9 years.. Have a nice weekend trish29
runrig 01
you wrote ". Slowing down taper till I see a new Rheumy end of Nov. They all say "not under 50" yet 6% of the people using the site were diagnosed with GCA under 50".
This is too far away, GCA needs to be quickly diagnosed, remember Kate Gilbert wrote about the 'fast track' system on this site.
If you cannot get an appointment within the next couple of days, Go to the nearest A&E and download the Guidelines on Diagnosis and Treatment of GCA and take them with you.
Suspected GCA is not be messed around with, if you lose total or partial vision, it is gone and it won't come back.
If we are wrong, we are wrong, please don't wait and run the risk.
Hi sambucca, I see my Rheumy on 16th Oct, but since these symptoms started in March she has not changed her view. The app in Nov is with a new Rheumy for a 2nd opinion, and because I currently have a Rheumy I am a low priority. Visited A&E.twice in April & May, they agree with 1st Rhrumy, I'm too young and markers would be raised. Even when I quoted the guidelines "Patients at highest risk of neuro-ophthalmic complications do not always mount high-inflammatory responses" Frustrating as once they say no to GCA they make no effort to find out what else could be causing it. Every time I reduce dose a new symptom appears. Back of skull and above right ear tender now, and most days the area above the leg of my glasses feels like intense pressure. It is certainly not good to be Atypical! Thanks for your reply, Runrig
Amitriptyline is an old fashioned tricyclic anti depressant which has been found to be effective in treating neuropathic pain. I am not sure it is effective in treating inflammation and it is not a substitute for prednisolone. As it causes drowsiness it can be effective at aiding sleep.
I have been taking amitriptyline for 10 days now and have found it fairly effective for the tingly/hot/ numb pain I had been getting in my hands and feet. The pain worsened at night and had kept me awake for 7 nights in a row before trying amitriptyline.
The pain is still there but it is easier to cope with during the day.
Like most types of neuropathic pain it hadn't responded to conventional painkillers. If amitriptyline doesn't work for you Trish29 then there are other meds that can help neuropathic pain such as Gabapentin and Pregablin. Has your GP considered referring you to a chronic pain clinic? They are generally very good and take a multi disciplinary approach to managing pain.
With the oesteo arthritis as well it must be difficult to work out if it is that or the PMR which is causing the pain. I hope you manage to find some relief soon.
Hello Keyes thank you for your comments on Amitriptyline. I know when I took it in the past that it gave me really bad headaches and upset my stomach but maybe I didn't stay on it long enough. I am surprised that you are already getting some relief from taking it because I was told that it takes a while to kick in . I am very pleased that you are getting some relief from your pain. I only take painkillers when I have to but I know the difference my PMR pain and the osteoarthritis pain so I am able to take the necessary painkillers. Thank you for mentioning Gabepentin and Pregablin I've never had these medications mentioned to me. My GP has referred me back to my Rheumatologist to get a new appointment . I spoke to his secretary today so I am hoping I won't have to wait to long. I don't really want to go down the antidepressant road but my GP thinks it will be beneficial for me .Thank you for your kindness trish29
trish29
A Pharmacist is trained for 7 year and then does 1 year under the eye of a Pharmacist.
They know more about drugs than anyone else in the medical profession. Trust your pharmacist and before taking any drug, either prescription or OTC, check for compatibility and timing in conjunction with what you are currently taking.
You will notice your GP refers to a book quite often before issuing the prescription.
I have been taking amitriptlyn for ages, even before poly. I found this a good relaxer. No side effects. If you try again. do 5mg, if OK try 10mg. I don't think they are a replacement for steriods, only a help for sleeping.
Thank you estherdevers for your reply .. I was given Amitriptyline in the past to help my pain while I reduced on the prednisolone. It would be nice if it helped with the long nights as my sleep pattern is often haywire. I am waiting on a reply from my Rheumy to see whether I have to go back on this medication.. Thanks for your support trish29
Hi All I have taken Amitriptyline on and off for years, for help with prevention of migraines, at the moment I take 50mg at about 9 in the evening, I am never groggy in the morning, quite the reverse, I'm awake early, and wish I coulod go back to sleep. I have only been diagnosed with PMR about 3 weeks ago, I have had 2 spells in hospital with pneumonia and pleurisy for 11 days, then home for 3 weeks and pneumonia returned, back in hospital for 7 days. The pain in shoulders, neck and hips started a few days after my second stay in hospital, I'm now on 15mg of steroids and pain free, seeing the doctor next Tuesday, it really worries me the thought of getting GCA and what happens if you get the symptoms at the weekend or on holiday? shall I ask my GP to give me a high dose of steroids for an emergency? the thought of losing my sight really frightens me! I dont know anyone who has ever heard of PMR or GCA and neither had I until this! thank goodness for this site
Hello Kate 1978 . As I've stated on previous replies that I have taken Amitryptiline in the past but I can't remember the exact dose . I think I used to go up on the Amitryptiline but down on the steroid. This was mainly to reduce the steroid and help the pain and my GP wants my Rheumatologist to reconsider doing this again. He may give me something else- who knows ? I really feel for you going through such a bad time. I agree with you about GCA , I don't have GCA but 9 years of PMR is enough for anyone . The ups and downs of a condition I will NEVER understand. Reading what you say it seems that the 15mg steroid is helping you and that always seems to be THE DOSE that keeps the poly on a level as long as a Flare-up doesn't occur. I wish you well and hope that your PMR is short -lived but as you say this site is Amazing and the support from other sufferers is wonderful and nobody seems to get PMR exactly in the same way. I will be watching this Forum to keep up to date with your progress.. Your Gp may allow you at certain times to go up on the steroid if you get a flare -up. Take care trish29
Hello Kate 1978 . As I've stated on previous replies that I have taken Amitryptiline in the past but I can't remember the exact dose . I think I used to go up on the Amitryptiline but down on the steroid. This was mainly to reduce the steroid and help the pain and my GP wants my Rheumatologist to reconsider doing this again. He may give me something else- who knows ? I really feel for you going through such a bad time. I agree with you about GCA , I don't have GCA but 9 years of PMR is enough for anyone . The ups and downs of a condition I will NEVER understand. Reading what you say it seems that the 15mg steroid is helping you and that always seems to be THE DOSE that keeps the poly on a level as long as a Flare-up doesn't occur. I wish you well and hope that your PMR is short -lived but as you say this site is Amazing and the support from other sufferers is wonderful and nobody seems to get PMR exactly in the same way. I will be watching this Forum to keep up to date with your progress.. Your Gp may allow you at certain times to go up on the steroid if you get a flare -up. Take care trish29
Kate1978 - Everyone with GCA should carry an emergency dose of at least 60mg with them all the time. Not only does it give you peace of mind when out and about, but you have it ready if there is an emergency. Are you under the care of a rheumatologist? With GCA that's where you should be and your GP can refer you.
Hi All thank you for your replies < I will mention this to my GP, she has not referred me to a rheumatologist yet. I honestly believe that all my health problems recently have come about through sheer stress
Hi Trish29
I take Amitryptiline 10mg at night, not to help with steroids, but to help me cope with the pain of Sciatica at night. It helps me sleep and I have not noticed any side effects, but it is a low dose. I have had Sciatica since August and it was improving with help from a Physio, but the hip and leg pain has got worse in the last few weeks, I am taking Paracetamol every day. My Dr took X-rays of my pelvis, left hip and thigh but nothing showed up and she thinks it is JUST MUSCLE PAIN! I am going back to the physio to see if there is anything else I can do to get rid of it. I might even try an Osteopath if it doesn't improve soon. I have been on AA for a few weeks and not sure if there is a connection, forgot to take it Sunday so will leave it for a few weeks and see if it improves.
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