It is a long time since I have written a post here, mainly because I have been struggling with all sorts of problems!
To re cap - I have had PMR for 10 years since I was 52, and basically never got below 10 mgs Pred. Many many flares trying to reduce. I have OA and have had 2 new hips and 2 new knees. The last op was Feb 2020. My mobility started to improve but then stalled when I developed pain on the top of my left foot 15 months ago,every time I walked. Have seen one surgeon who declared it was capsulitis and gave me steroid injections in the toes which did nothing. I then had orthotics fitted- no change either. I am due to see another foot specialist next week, hoping for some idea as to what is wrong.
Meanwhile, I have been on 35 mgs. Amitriptyline for about 8 years to help me sleep as pred took my sleep. I thought it was really helpful, despite some nasty side effects. About 2 years ago, my sleep started to get worse and I tried all sorts to make it better to no avail. When I last spoke to Dr Hughes, over 2 months ago, we discussed me weaning off the Amitriptyline as I didn’t feel it was doing anything anymore. He gave me a tapering schedule and off I went.
Well, I have never felt so ill in my life! I have been having horrendous withdrawals over the last 8 weeks so far- nausea, confusion, sleeplessness, pains in various places that need codeine to subdue,irritability,a very short fuse, agitation, breathlessness,tearfulness every day, mobility problems, fatigue, and probably others I have forgotten! I am hardly functioning at all. We are on holiday in Tuscany at the moment and I haven’t been able to do any of the driving as I have lost all confidence and all I can really do is nap and sometimes eat. This has come as a huge shock as I had no idea that this would happen. If I had had, I would have reduced my dose much more slowly.
I looked on the patient.net forum about this last night and realised it is quite shockingly common and the withdrawals can last up to a year! Do wish me luck!
I just wanted to warn anyone going on this drug to consider it very carefully and also to anyone thinking of coming off it to take it extremely slowly.
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suzy1959
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From what I have read, people can still get awful withdrawals even on low doses and even if they have only been on it a few weeks! It makes me wonder what toxins I have been putting into my body!
I feel the same way about Pred now !Thought it was a wonder drug when i fist started it! I now know thats not the case for me , it has given me a lot more problems than i could ever imagine ! I am slowing coming off it and some of the pains are already starting to vanish ! Good luck take it slowly and in your own time, You will get there! Best wishes Viv
What a horrible experience. I hope that you will get it over with soon and that your holiday won't been totally ruined.
Hello Suzy, good to read your post as my husband was prescribed same drug and been taking it over a year now to try and help ease the pain from both his hips until eventual surgery. You may have seen my resent post about his fall on Thursday morning. I imagine hospital aren't giving it to him as morphine is being used via an IV. Wondering now you've said this that's causing his confusion. We've put it down to the morphine and sedation and epidural for his surgery. Worth knowing. when he comes home I'm not going to give it to him anymore.
You do need to mention it at the hospital - they may not be aware.
I don't think the hospital know he's taking it. Forgot to write it on his list of drugs, only his usual, cholesterol, BP meds etc. Something else to worry me now.
It is so easy to do - been there, done that - and he was always in the local hospital which was supposed to have everything in the computer! Don't worry - if you can't get through now (bit late, will be night shift) call and tell them in the morning.
Wishing you all the luck and love Suzy! I wondered where you were. I am so sorry that you have been suffering so much. They give Amitriptyline out like smarties. I always thought it was one of the benign “ go to” drugs that GPs prescribed for, well everything. Yours is a salutary tale. I took 10 mgs for a while, to help with sleep and was able just to stop with no drama. I also think that 10 mgs Pred would be my ideal dose. I am on 7 mgs and can hardly walk. The difference is I was diagnosed with non cranial GCA/LVV. It is much harder to manage than PMR, in my experience. I can’t help wondering if your PMR hasn’t morphed into large vessel Vasculitis too. I am 6 years in and I have never felt worse, PMR was much more manageable. What I have is hard to diagnose, mine was found in my left armpit and seems to have carried on worsening in spite of Tocilizumab. I do have osteoarthritis and Spondylosis ( only diagnosed in my neck). I also have psoriasis that makes me wonder about Psoriac Arthritis. I can see a nightmare ahead, like yours possibly. I would urge you to seek more information about the possibility of GCA. It’s the fact that only Pred helps that is the red flag. Good luck Suzy, stick with us for a bit. Sorry that you were unable to do your usual in beautiful Tuscany. We planned a modest break in a cottage in the Peak District, for my husband and son’s birthdays. They went on long hikes through the lovely countryside and I mostly slept. It is so isolating! 💐
The tocilizumab only works for the inflammation caused by one of 3 different mechanisms - if the other two are involved then they are unaffected and need pred to manage the inflammation. But the TCZ also doesn't stop the actual illness process, it can be continuing in the background, probably these other two mechanisms but they don't really know I suspect.
Jane, you are so sweet and kind and I am really sorry that you are suffering so much too! I have thought about GCA but couldn’t see any additional symptoms that would point that way. Dr. Hughes has been thinking Fibromyalgia but I can’t see that either. I just feel like a bit of a mess at the moment with no clear way through!Still feeling very nauseous today and wishing I was at home in bed! Also, it is hot here and my feet have swollen more than they ever have before and are actually hurting they are so tight!
My GCA/LVV had no specific symptoms. I felt headachy and generally unwell but nothing clearly definable. I now have foot pain and swelling ( coincidence with you) and sometimes really sick aching legs. All this comes with fatigue like never before. I saw my Rheumatologist ( Prof Sarah Mackie ) today and she agrees that Psoriatic Arthritis may have joined the party and is affecting my feet which she noted were swollen. She emphasised that it was extremely important to look after our feet. I finally gave in and will be trying Methotrexate which is specific for Psoriatic Arthritis and may help the rest with any luck. I do seem first in the queue for side effects though. I was only diagnosed with GCA/LVV because Sarah is thorough and decided to do the specialist scan for GCA. There is a growing realisation in the Rheumatology world that there are unlucky ones like you and I and others on here, who seem to be in it for the long haul. She thought my first autoimmune disease - Graves’ thyroid disease was a factor. The fatigue comes from the fact that the body is constantly on high alert because it is being attacked and basically, this is exhausting. Keep in touch and let us know of any insights from your good Rheumatologist. XPS. Slather base cream all over your feet and keep them elevated as much as possible - I get the tightness and sausage toes . Courage!
I used to feel just like this on pred ! Until i did Dorset ladys tapering plan, so far its going really well, i amazed really how far i have come ! There is no easy answer except you have to go very slowly, believe me i know just how you feel. Good luck ,best wishes Viv🌷
Good to hear from you again but sorry you are having so many problems.
I have been taking Amitriptyline for some time for peripheral neuropathy and then increased it with shingles. I reached the dose of 30 mg ( I’d been on that for about 2 weeks) and then went down to 25mg. That seemed to go smoothly and I had never considered Amitriptyline a problem drug.
After about though another year I decided to cut down to 20mg from 25 mg. I felt absolutely awful with very bad heads. I couldn’t understand why but then I, like you, looked it up on Google. I was amazed at the problems folk have had reducing this drug. I did stick it out for about 3 weeks and things did get better. I had intended though to reduce further but haven’t attempted that yet. I, again like you, realised I needed to reduce very slowly with this drug. I do wish the doctors would warn us about possible problems of tapering and to take it very easy.
All the very best to you. Hope you get your problems sorted and will at least at the moment be able to enjoy the sunshine and scenery in Tuscany.
Same here…lots of new problems, one of which…Essential Tremor…was thought by specialist to be caused by either amitryptylline or tramadol, both of which I’ve taken for 10 years (neither drug for PMR). First I weaned off Amitryptyline…it took me 6 weeks to come off it, & I had no problems whatsoever, no side effects…& I only write to say that it affects different people indifferent ways! I do get a lot of side effects when I take it, but it’s still worth it! Then I tried to come off Tramadol & suffered terribly. I stuck it for 3 weeks then phone my doctor!! It was impossible to continue & I couldn’t not have travelled anywhere, could hardly walk!! Went back onto both drugs as my tremor just increased, not decreased, & the amitryptylline increases my sleep from2 hours to 5 hours each night& tramadol helps pain somewhat (not PMR pain). I have inflammatory arthritis now, too, but my feet were helped by them making custom orthotics…I hope they made yours properly! They changed mine3 times to take pressure off different parts of the feet, & when the pain spread to other areas they tweaked them again…it has taken over a year to get them just right & I go back for checks every six months. I just felt I should write my experiences as I’ve found it can be quite different! (I’ve also now been diagnosed with spondylitis and hypermobility, & waiting for my doctor to ring & explain abnormal x-rays, which show, instead of the expected worsening of OA in hips, that the muscles that attach to my hips are growing bone on them & that is what’s causing the appalling pain!!) take care, we love Italy & hope one day to give up shielding & return there!! S x
Thanks for the warning! I was prescribed amytriptylline by my GP to help with neuralgia/sciatica type pain in my lower right leg which was stopping me sleeping. However on reading the PIL I decided not to take it. I'm glad I didn't. This was before PMR diagnosis and the pred stopped all my pain.
Mayo Clinic has a drug addiction program for pain meds where they use a tapering program, much like the dsns method, only much faster. Amytriptylline is highly addictive, difficult to reduce. Wishing you all the best, you will get there!
Gosh Suzy, you've sure been through the meat grinder, as my Mom would say. Can't imagine having all those major surgeries along with other complicating health conditions, and now dealing with weaning off Amitriptyline and the unresolved foot issue.
It appears you know what you have to do, but the side effects of weaning off the sleep medication sound horrendous. I took 10 mg for a few years while still working and unable to sleep through the night, but stopped cold turkey without any difficulty. The same issue returned a few months ago and when I asked my current GP about starting it again he advised that new research has shown a link between sleeping meds and Alzheimer's so I decided not to bother.
Sending virtual hugs, which is about all I can do, but do wish the withdrawal symptoms fade away ASAP.
So sorry to hear about your troubles. I was on tricyclic anti-depressants back in the 80s. They were awful (side effects). It was a real watershed when SSRIs came along. Curious to understand why tricyclics are popular again.
I do wish you luck, it sounds horrific and no amount of lovely scenery will improve how you feel wouldn’t think. I’d go back to full dose until I got home then start again. I must have been lucky, I suffer reactions very easily to all sorts of prescribed meds, yet stopped the 10mg of A (without tapering) I’d been taking for about 4 years without any problem! I was glad to stop it as the aftertaste was nasty but needed more than 2 hours sleep if I didn’t take it. Professor Dasgupta did say to taper it a day less each week until off it but I just stopped it instead!! Hope you can enjoy the rest of your holiday so good luck again!
OMG how horrid. I've learned never to try and change meds around a holiday in case things go wrong. You could ring your travel insurance co and explain the situation that you haven't brought your meds and see if you can get a local prescription? Or use your GHIC card if you have one?
Thank you to all you lovely people who have responded to me. You kept me sane when I felt like I was losing myself.I wanted to report that I think I am over the worst of the withdrawals.
This is the last day of our holiday before we drive back to UK. On the way over I couldn’t drive at all!
I have mostly got my appetite back but inevitably I am having a lot of problems with sleep. I am using Phenergen as that is what I have with me, but I don’t like the kind of sleep it gives me so will be looking for alternatives when I get home.
Will be a tad cosy! Which way do you go? And be prepared for a LOT of traffic - it is the end of the southern German holidays around Whitsun and this weekend is a long weekend for the Germans and Austrians (Thursday was Corpus Christi) ...
We are going to Bologna, Milan, Mont Blanc tunnel and then up the east of France. Hope we don’t run into too many Germans! There are more Germans here than British that’s for sure!
Thanks for the heads up. I am trying to wean of Amitriptyline now. 50 mg down to 25 mg to 12.5 mg now. What taper did you try and what do you suggest I try next?
wow this s an unpleasant reminder of what was happening 2 years ago. I have continued to have a rough ride since then.
I’m not at all sure in retrospect that the Amitriptyline was to blame for all my symptoms.
My insomnia remains a major problem- only sleeping pills work for me now. I have been through all the other possibilities and I know I haven’t got a long term solution at the moment. Also, my nausea got worse and worse and I was eventually diagnosed with a hiatus hernia. Resolved a couple of months ago.
On the plus side, a recent PET scan revealed no inflammation, implying that the PMR has finally gone after 12 years! I am reducing very slowly and still in a lot of pain, probably caused by the pred.!
I was on amitriptyline years ago for depression. I took it for years. It was giving me tachycardia so I had to get off. I don’t remember how long it took me to get off but I know it was ages. I was on 50 mg. I starting cutting them in half for months. Then in quarters for months. Then taking a quarter piece every other day for months. Eventually I was able to stop. That was one hard drug to come off of.
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Does anyone else find Amitriptyline helps their pain?
PMR now? 
