Amitriptyline added to assist with prednisone tapering : GCA patient diagnosed feb 2018

[Blurry62]

Hey everyone! I've been to see the specialist who advised I try taking 10mg of amitriptyline for pain associated with moderate steroid withdrawal. I'd have niggles of head ache and body aches all day--every day. It's been a week, and the medication is really helping. I'm surprised! Still have significant weakness and require a nap every afternoon but, it's very nice to have less of the nagging pains. I'm on 20.5 mg of prednisone. Pressing on towards the next drop. I wanted to share the good news and information--- I'm wondering if anyone else has used this medication in conjunction with prednisone.

[HeronNS]

No. I have by accident found that aspirin or Tylenol help, but I have never used them deliberately for steroid withdrawal. It's good that you've found something which helps you, but I myself would be afraid of it. 😕

[Blurry62 in reply to HeronNS]

I understand. I Am not considered to be a compliant patient. But I found a doctor who listens and seems to understand GCA. I was diagnosed in Feb. 2018. I was desperate for some relief when I found him six months ago. By the time ( in August) he expressed his concern about me not being able to reduce the prednisone at all and suggested the amitriptyline, --he had earned my trust. I'm so glad I co-operated. Haha

[Hidden]

Hello Blurry

You’ll find there are quite a few of us who take Amitriptyline at night, l was prescribed it prePMR due to my shoulder injury & then for a shoulder impingement.

I presume you are taking it at night? If you find yourself a bit groggy in a morning, take it a bit earlier in the evening.

Kind Regards

MrsN

[Blurry62 in reply to Hidden]

Yes, I take it about 6:30 in the evening. Noticed the grogginess right off. I haven't noticed any undesirable side effects other than taste being off. Prednisone does that too.... We shall see how it goes. I'm looking forward to hearing what others experience.

[Pongo13]

I have it as sleeping is an issue but I use sparingly and also use an alternative herbal night aid. It was certainly necessary at high levels of steroids but at 5.5 I am coping better (long may it continue).

[Hidden in reply to Pongo13]

When you say sparingly do you mean you don't take every night? It doesn't work that way you have to build it up in the system even if 10mg.

[Pongo13 in reply to Hidden]

I took them daily at the high levels. My doctor was reluctant to prescribe long term. She is happy to prescribe if I can demonstrate some restraint in their use! So I use them when I'm tapering/struggling to sleep well. ( When I took them daily for a long spell they seemed to lose their potency.) However, I know you are correct - it would be great if I could just get that prescription.

[Hidden in reply to Pongo13]

Pain Management Specialists prescribe them as they relax the muscles, l had them prescribed for each shoulder injury & l was on them when l was diagnosed with PMR

[Blurry62 in reply to Hidden]

That must be why the foot cramps are improved! I took the pill too early last night. I woke at 1 am and couldn't knock off again until 3:00. I'm needing the sleepiness to last longer through the night.

I caught myself jaw clenching during the night. Didn't know I did that. Not sure what importance it is but, certainly can cause some jaw discomfort.

[Hidden in reply to Blurry62]

It certainly can. I wear a bruxism night guard. I got mine at the dental hospital, but previously just used one (or lots) from online. No idea how much a proper one is like I have now but it's much better. I had to make slight adjustments but it fits great and really stops me being able to clench my jaw and grind my teeth as hard as I used to.

[Blurry62 in reply to Hidden]

I'll check that out, thanks!

[SheffieldJane]

I take 10 mgs to aid sleep. It certainly did when insomnia was acute. I am glad it is helping you. I believe it is prescribed for Fibromyalgia pain too. Keep up the naps, they are a life saver.

[suzy1959]

I'm on 35mgs. to help me sleep but they do also help the pain a little. Side effects as above but worth it for me! If I forget to take them one night, I am up all night.

[Blurry62]

Thank you for sharing.

[S4ndy]

I take 50mg to help with pain. I have taken them for many years. I take them about 7.00pm and go to bed about 11.00pm. Once I fall asleep I stay asleep until the alarm wakes me. I found if I take them any later in the evening I get a bit of a thick head the next day.

I take mine for nerve pain in legs from impingement in back, muscle spasms and also to help with tinnitus. The two side effects I have are a dry mouth and a groggy feeling next day if I take them too late.

Hope they help you. xxx

[Blurry62 in reply to S4ndy]

Yup. Mouth is dry as a desert. Any digestive issues? My intestinal tract seems a bit touchy.

Thank you for your reply.

[S4ndy in reply to Blurry62]

That would probably be the prednisolone. Amitriptyline is also used to calm down the bowel in IBS. I've never had an upset tum from it but we are all different

[dillydally1]

hi, I have taken amitriptyline for quite a few years, for shoulder problems and trapped nerves in neck, I was on 50mgs nightly but have gradually reduced to 20mg or 30mg a night. I also take mine around 6pm because of the grogginess in the mornings. they don't help me get to sleep but when I finally do sleep they keep you asleep for longer, I am taking 12.5mg pred at the moment, wishing you well xx

[Oumaof2]

Hi Blurry62... I've been taking Amitriptyline for past 5 years.. . Initially prescribed for insomnia, then bursitic hip which didn't respond to Steroid injection...

I manage 4 hours quality sleep then doze for remainder.... I would be a mess if I didn't take them... Currently on 6mg Pred reducing to 5:5 tomorrow...

Pleased they're helping you...

All good wishes. 🌻

[Griggser]

I have tried it a couple of times over the last couple of years. 10mg makes me very woozy during the even though I take it before 8pm. Tried 5mg and almost the same so stopped for now.

[PMRpro Ambassador]

I know people who take it but they have never said it helps with reducing the pred dose.

[Blurry62 in reply to PMRpro]

I hope you see this. I wanted to let you know the specialist said very chemically sensitive people (like myself) have greater than average difficulty with pain when attempting a steroid taper. That was true for me. I just have had a terrible time reducing in any amount. Amitriptyline helps relieve the extreme muscle pain I was having . It has made a phenomenal difference for me thus far. The 20th is my one month mark on it. I've been able to comfortably continue my taper. I'm very hopeful.

[Lauren103]

Hi

My doctor just recommended Nortryptiline for me; it sounds like it is the same as what you are taking or very similar. I have had difficulty tapering prednisone. I also take Actemra but still can’t get below 6 mg without headaches. My latest blood work showed CRP and ESR at almost nil. My doctor thought we should give 10mg of Nortryptiline a try. I don’t really want to take it but at least it’s a low dose. I have had GCA and PMR since 2016. The one good piece of news at this time is that all of my PMR symptoms have gone. I hope they stay gone. I am very interested in knowing about any side effects you may be experiencing. I have just started taking Nortryptiline . I have only taken it for 2 nights so I haven’t had enough time to evaluate much yet.

Thanks for your post-

[Blurry62 in reply to Lauren103]

Hi, sorry for the delay. If I take 15 mg of amitriptyline within an hour of bedtime, I dream vividly and often the dreams are unpleasant. If I take it three hours before bed I sleep well. I notice also a very dry mouth. Overall, I've been really happy with the medication. I've just started to taper down to 16 mg of prednisone and notice some emotional upheaval. But hey- it's the holidays and everything that can come out of our emotional baggage does choose to do so at Christmas. I may hold off the taper until next week.

How do you feel on actemra?

[Lauren103]

Re: Actemra

I have been taking it for over a year; the thing it does well is to keep the inflammation markers very low. I have had no trouble taking it - so I am lucky. My difficulty is with headaches- always at my left temple. This makes it very hard to get down and get off prednisone . My doctor felt that these headaches may be residual and not related to a flare or Actemra. So, he prescribe the Nortryptiline rather than something like MTX. I have been taking 10 mg for a week; he wants me to start 20 mg next week. I am currently at 8mg of prednisone and moving to 7mg soon .

I know what you mean about the dreams; I will try taking my dose of Nortryptiline earlier. Thank you for the info.

Merry Christmas

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