I haven’t written for a while. But continue to read with interest. I had been at 1 mg of pred but in the last few weeks things have been slowly getting worse. I am 3 and a half years since first starting treatment. Came off pred for 5 months last year then had to back on. I work full time in a pretty demanding role and on the whole live a normal life. Albeit that I feel like I am older than my 55 years.
I rang my GP today and spoke to the nurse practitioner. Bloods in the morning increase pred to 5mgs and referral to the rheumatologist. I have intercostal pain when I sneeze and I am having difficulty sleeping because of the usual pain when turning over. The nurse practitioner also suggested Amitriptyline at night. I thought this was for fibromyalgia but would welcome any feedback if anyone else has tried this?
Any other suggestions welcome😃
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JulieR2
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Hi Julie, I have been on high dose steroids for over 10 years, I am able to taper down to 15mgs a day but unfortunately the pain becomes too much throughout my body so it's back upto 30mgs.
At least i get to reduce for a period and any reduction is good.
I also take slow release morphine daily and still suffer pain , however at least i get to function a little as without, i would not.
I was also given Amitriptyline several years ago as my Gp said it numbs the nerve ending and would help as i was also getting sharp pains in my head.
I take them of a night, and im given enough monthly to take upto 100mg nightly if needed, i manage to stick between 50mgs and 60mgs.
I would advise you to take them as early of an evening as they can make you feel groggy in the morning, also reported as a side effect is possible weight gain.
I had been taking them several years before learning about weight gain, so again careful, healthy eating as much as you can.
Thanks so much I have been battling weight gain for 3 years so thanks for the advice. I will let you know how I do.
Hi JulieR2, it is prescribed for fibro but also for pain relief at night and generally. I was on it for over 15yrs until I had to swap for another more powerful drug for fibro. I always got along well with it and could tell my back and upper body were worse if I missed a dose. Like all drugs it can have side effects but I can't recall any at 10mg which is the usual starting dose and when I had to increase I was low carbing anyway so weight gain stabilised. . I think lots of people have been prescribed it for PMR just to aid sleep too but as above...take 7pmish so you don't get a hangover.
Thanks ever so much. I will give it a go. To be honest I have gone from I will be off steriods in a year. A typical response I know😀 To I will try anything that helps! Until lock down I had weekly massages so I am missing those too. I will let you know how I do...
Hopefully you will notice the difference and because it's so low dose you can go up until it works. Just think how lovely it will be once lockdown ends.🌻🤞
I have been on 35mgs Amitriptyline for quite a few years now. It helps me to sleep as the pred. keeps me awake. If I ever miss a dose, I am awake all night. I have been on the pred for over 8 years now and struggle to get below 11mgs.
Sorry to hear of your setback. I was diagnosed in 12/16. I discontinued 12/19. Three years to the date more or less. My right shoulder, which was my first PMR pain has been giving me some troubles these days, but without fatigue, flulike symptoms, and being hesitant to go to the hospital to have my blood tested due to Covid, I'm hanging in at club zero for a while.
Years ago I was put on Nortrptyline for chronic pain, a sister med to amitryptyline, I'm sensitive to meds and I know that these meds can have side effects so I started quite slowly. I never needed more than 25mgs. When I discontinued the meds I did the same in reverse. I never had any side effects. No grogginess, no weight gain. I stopped because the cause of my pain was treated and I didn't need the meds anymore. It was a good medication for me when I needed it.
I'm not a doctor, but as a psychologist I've heard lots of stories about people and their medications. I am convinced that going slowly at the beginning can give our systems an easier time to adjust and we can have get to a therapeutic dose without the same side effects. Of course this is totally anecdotal, n but if this is a drug you'll be living with long term and it isn't acute for you to start at a big dose, maybe asking your MED about tapering up slowly could be helpful.
Hi Julie, do you have both Fibro and PMR. I was prescribed Amitriptyline too. But this was prescribed by my GP who was treating me for osteoarthritis, he didn't diagnosed PMR back in Dec 2019 even though all my symptoms were pointing in that direction, sadly, I had to cough up and go private. Now my GP is refusing me blood tests to check my ESR/CRP markers telling me they cost too much. I didn't find that Amitriptyline help me. I consider myself so lucky as only get a little pain in arms from PMR that is bearable. It's the GCA that's now pretty much under control and want it to stay that way.
Would be interested to ask the ladies how often their doctors check their inflammation markers via blood tests. I'd have thought being on long term Prednisone this should be done at least 3 monthly and check HbA1C too.
I request my own blood tests every three months, Only one GP has ever queried this but when he realised that I had GCA as well as PMR he was agreeable. That said, I must be well overdue for one now - yet another thing to wait for the end of lockdown.
I have my blood tested about once a month from onset to about 5 months. Now about every two months which is how often I see my doctor. I'm in the US if that makes any difference.
Hello Julie, I've had PMR for 15 years and are on 7 mg of pred. I do try every now and then to taper, I manage to get get down to 5mg but within weeks I have a flare up and have to go back to 7mg. Three years ago I developed peripheral neuropathy in my feet. Saw the specialist at Addenbrooke. The biggest problem I had with this new development was that I had pain at the top of my ankles, it was like they had been cut all around the ankle. The prognosis's was that the brain was sending messages trying to find my feet. As the brain coudn't find the feet, the brain therefore thought that the feet and been cut off!! I was prescribed Amitriptyline. For me it was a horror story. Took it during the day, felt like a zombie, took it at night, had horrendous nightmares. Had to give it up in the end. Took pain killers. Eventually after 6 months months the pain subsided. I wish you all the best and hope my experience has gone some way to help.
That's strange and glad you've written about your feet. A few weeks ago one Sunday evening watching telly I realised that some of the toes on on left foot were numb. Now though, it's round the edges of my foot and slight pain when bending foot. Not sure a Dopla test would show anything up, but may ask for one when things improve hospital wise. Such a worry not knowing what's going on, but only one foot is a problem. No pain on walking at all. I just feel a nuisance keep asking GP for advice. I said to my husband this morning (feeling good today mentally) but if I saw him when feeling down in the dumps and very irritable, due to steroids, I think I will give him what for and everything will come blurting out...like he never diagnosed me with PMR and insisted I had osteoarthritis, imagining leaving the GCA that I later went on to get. I think he needs reminding of this. Bad luck down at that surgery, as in 1984 a different doctor, who has since died, misdiagnosed me, I was left for four days suffering bacterial meningitis, losing the sight in my left eye, and two weeks in hospital and almost a year recuperating. So not such a good reputation down there. Receptionists and nurse are lovely though and so helpful, so that's a bonus.
Ann, I understand everything your saying. Before I was diagnosed with PMR I went to several private specialist and for many years I was on Acoxia. It wasn't until I made an effort to find out what was really wrong.
I took all my findings to my GP and said there you are it's in black & white what I've got so what do you say now! After many excuses like, don't read and believe everything that's on the internet, blah blah bloody blah.....
To be fair to the GP I was treated with a lot more respect. I then had everything thrown at me, monthly bloods, test and test etc. I have now moved and are now with another GP.
I have to fight for everything with this GP but do you know what, I now do not put up with rubbish and excuses. The best person I talk to now is the practice nurse. She seems to know more than the doctors and helpful and sympathetic. I am truly fed up with doctors and their superior attitude and Im more than happy to tell them so because it's hard enough battling with PMR and neuropathy. I also have problems with the pharmacy
"are you sure you need to take this dose, cant you taper etc etc. No I bloody can't is my answer, I know my own body and if it's not right I have to deal with consequences, not you!!!! On the neuropathy I pushed really hard to see a specialist and managed to see one, who I have to say was excellent. His parting words to me were if you have any problems contact my secretary straight away and I will see you. Well, I did have a problem where the neuropathy was creeping up my legs, phoned the secretary and within a week I was seen by the specialist. That's what you want and that's how it should be. 18 months on the pain has gone and neuropathy is diminishing. I do have problems walking and I tend to fall over a lot but I push through and the walking is getting better so fingers crossed.
I apologise for rambling on but you struck a raw nerve.
Great reply Bobbury and my sentiments entirely. We can be respectful, but one doesn't have to say yes doctor, no doctor. Since my misdiagnosis of meningitis I'm not in awe of any doctor or specialist....usually our age group are, but not me. Problem is, it's the cost of keep having to see my rheumatologist privately. He charges £260 to actually see him, which is difficult at the moment. When he's called me to do a telephone consultation it's cost £175 for six minutes, that's been three times since lock down. I requested my GP put me on his NHS waiting list, but been told I wouldn't get to see him for a year...no good to me !! How was your neuropathy diagnosed, did you get a Dopla test ?
To be honest I had so many tests, three different consultants who supplied all their annalists to this one consultant in Addenbrooke I couldn't say what they were called. Lot's of electrode stuff and various blood tests, brain function etc etc At the end of all this the consultant said that he doesn't know why this has happened, the only way to be sure was to have a biopsies taken from my ankle but he did say it's not a nice procedure and at the end of it it could be a 50/50 chance of finding the cause, so I declined. My neuropathy started when I had a back pain. Saw a physio and whilst checking the back and the legs he noticed I had numbness in my legs. He wrote to the GP suggesting I get it checked and go for some tests. When I saw the GP before the test you could see the doctor didn't have a clue. It was, oh yes well we better deal with this immediately etc etc... At the beginning when I had the pain in both ankles that's when I was prescribed amitriptyline. The first dosage didn't do anything, the consultant then decided to double and that's when I hit problems. I just couldn't live with amitriptyline, it was horrendous for me, just hated it, worse than the problem it's self. 18 months on, the pains gone, learning to walk properly and of course dealing with the PMR. I did read somewhere that in 1000 cases of people taking pred there is a possible side effect leading to numbness of legs and feet. I never checked it out as I thought if I delve into this I might find something else, so I left it alone.
I cant offer any suggestions to your problem, only to say, make the appointment, albeit they it's a year waiting, once you've got the appointment keep chasing them for cancellations etc, you just might be lucky!!!
For every horror story there is at least 1 good one. I always try things myself before I decide...living with pain that can be managed is a no brainer to me. Starting at a low dose may be absolutely fine for you. You know your body best, but I know of 10s of people personally, who have taken it and had no issues but a bit of a hangover that was resolved by taking it by 7pm. I have had a problem with other meds, but if it may help I will try. No one wants to take anything but if nothing else helps....
It’s used for a number of reasons. OH takes it for trigeminal neuralgia and some on here take it for insomnia. If helped me in my darker days but it left me with a nasty taste and hangover feeling but I’m not the best example as react to anything and everything.
I take it for peripheral neuropathy and take 25mg. Funnily enough this week as I have been trying to taper the pred the peripheral neuropathy has got worse and I have been having more pain not always controlled by the Amitriptyline. I’m reluctant to up dose so I’m just waiting to see what happens. I’ve also been walking more so don’t know if that affects the neuropathy. Like most others I take the dose about 7pm and have, up to now had no bad reactions.
I've never had it prescribed for pain, but did take 5 mg as a sleep aid at the beginning of PMR when on the higher doses of prednisone. I came off it very easily after a few months.
I have been on and off Amitriptyline for the past couple of years, I have PMR and Fibro, and the Rheumy seems to want me on it, for sleep as much as anything.
I could only tolerate 5mg and that left me feeling so tired all day and quite detached from everything ... so i came off it.
Each time I have tried it I have had the same results, Nortriptyline was the same, Rheumy said less side effects with that but for me the same. I think I am quite sensitive to the drugs, but either way they have to improve your quality of life or there is no point, and for me they didn't unfortunately .
My daughter takes this for headaches and as a sleep aid. It works great for her. She does not have an autoimmune disease but is diagnosed with schizoaffective disorder, PTSD, as well as anxiety and ADD. Just explaining why she is taking it.
I'm taking 25mg in the evening for fibro pain and to help with sleep at night. I'm taking them for the last 6months and i SERIOUSLY REGRET ever starting on them. I try to take them early evening around 6pm or 7pm but still I wake every morning feeling really groggy, It's summertime here and I used to be an early riser on these beautiful bright mornings and I'd be up doing my yoga and journaling but I'm sleeping about 10hrs every night and still waking very tired so if you envy my many hours sleep - don't! It's not restful sleep. So now I'm going to have to suffer withdrawl when I decide on a date to come off them and I'm really not looking forward to that.
I've tried various different pharma drugs for pain/fibro but it's a bit like a merry go round and when you get on it, it's so hard to jump off again! I'm making a promise to myself that when I'm totally off this awful drug - oh I forgot to add other side affects, dry mouth, big reduction in libido and weight gain even though I have a squeaky clean diet! I will never go on a pharma merry go round again! I'll find healthier and natural alternatives because I have found that many of the side affects from pharma drugs become worse than the initial reason or problem that I started with. PLEASE don't make the same mistake as I did!
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