I'm concerned that being treated for PMR with Prednisolone and Amitriptyline could well mean my true condition 🤷🏻♀️ (whatever that may be) is not being addressed.
I am confident my Rheumy is knowledgeable, I just wish I could make contact with her on occasions other than consultations scheduled by the NHS. At my last meeting with her I dropped in that I gain a lot of useful information using this site and she agreed that doing my own research and being in touch with this support group was fine. If she considers I'm too young to be suffering PMR why has she not suggested other meds?
The attached photo shows the blood tests recently taken
Thanks for your thoughts 🥰
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Capprice
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Hello and welcome back, can you give some detail on your dosing from the start and symptoms and how how they’ve been affected? 55 is nowhere near too young. I’m afraid your doc doesn’t sound like they are up to date. You don’t need joint swelling to have PMR either. Was that vitamin D alert on that list you’ve posted ever addressed? Really important that if it was low that you have supplements as it affects the musculoskeletal system amongst other things.
Apologies, I do also take 0.025mg vitD. I await results of the blood tests. Perhaps should have waited until tests are back. I'm just getting really anxious sitting here alone during lockdown with all sorts going through my head 😒I do have friends and family asking how I am (as I do them during this difficult period for everyone's mental health) however I don't let on to anyone how debilitating this disease is as there's really no benefit. Letting them know would just make them feel helpless. Sorry, just woke extra early this morning with heart palpitations and anxiety x
At 7mg you may well be right in the difficult low adrenal phase which can also be causing anxiety and palpitations. We produce cortisol every day which helps us deal with stress, physical challenges and illness. When we start Pred the dose is high enough such that the adrenal glands switch off because their efforts are not needed. When we get low enough they need to start making up the shortfall. Around 7mg the dose is a bit too low for your normal day’s needs but still a bit high for the adrenal glands to think they need to try. It can make you feel just grim with fatigue, panic, nausea, weakness, the list goes on. The idea is that one reduces on down very very slowly to both wake up the adrenals but not get into a state of collapse from not enough steroid. However, you have got to 7mg rather quickly in the normal scheme of things and if you do have PMR pain you may have got a bit too low to control the inflammation. 55 is very much not too young for PMR. When I got to this stage I did not have my disease symptoms but still reduced at only 0.5mg every 6-8 weeks. It was tough going even then. Why were you given Amytriptyline? As for keeping quiet about your suffering, my experience is that when friends and family find out what was or is going on they feel sad they were not told. Helping and supporting somebody isn’t about having a magic wand a making it go away, it is about simple things like being on the end of the phone. Please try to reach out, I rather suspect suffering in silence won’t help you get better. What would you do for them if they were in the same position as you?
Rheumy insists I take Amitriptyline to relax my mind and body (thus relaxing my muscles) through the night in order to wake refreshed and more agile 🤷🏻♀️
Until my visit to Rheumy last Monday I was unaware that the effects of Amitriptyline lasted 12 hours. Info on the drug suggest one takes it at 8pm. As I'm a bit of a night owl, and generally need just 6 hours sleep, I was taking it at 10pm (asleep by midnight) and waking (as per alarm) at 5am to take Pred before sleeping a couple more hours before rising at 7am. Upon waking (5am and 7am) I found I was trembling and had rapid heartbeat. I then stopped taking Ami. Since restarting the course, last Monday, I take Ami at 8pm.
I am certainly more chilled during the evening although not necessarily less stiff in the morning...yet! Med pamphlet states it takes several weeks to kick in 🤞
Is the vit D flag because they need something else as it says contact lab? She IS looking for other signposts I think as she has requested anti-CCP:
"Anti–cyclic citrullinated peptide (anti-CCP) antibody levels are characteristically elevated in rheumatoid arthritis, although they can be elevated in other rheumatologic conditions associated with inflammatory arthritis, such as systemic lupus erythematosus."
She may be knowledgeable - but the NICE guidelines for PMR say over 40 as the age criteria. It may be less common in younger patients but that doesn't mean it doesn't happen and there really are plenty of us! Plus, if they refuse to consider younger patients as having PMR, they are going to missdiagnose them (probably dismissed as fibro, there is plenty of overlap) and not realise that it is more common than they think.
Just a thought. My Rheumy is NHS and is aware that we are not getting to see each other as much as we would like due the covid etc. Therefore I write to him if I have any queries or if I need advice. So far this has worked as he either replies to me or telephones if he needs to. Now I am lucky as I have really good Rheumy and GP so this might not work for everyone. Oh and by the way I was 46 when I was first diagnosed with PMR. It went into recession but came back again with a vengeance when I was 54. That was 4 years ago now so saying you are too young for PMR is absolute rubbish!
My concern is, if she considers I'm too young to be suffering PMR.. when will she be able to correctly diagnose my condition and appropriate meds. In a way I hope I do have PMR as I know one day the disease will cease to have such a debilitating effect on my life PLUS the support offered here on this site is so unbelievably damn comforting 🤣
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