Diagnosed PMR April 2019 ESR 90 CRP 42 initial 20mg Prednisolone, ADCal D3 1 tab twice a day , every 3 wks reduction 17.5, 15, 12.5, 10mg, then recommended 1mg per month.
Followed DSNS taken slower taper to Jan 2022 2mg , Sep 22 1mg.
Im 54, returned to work following Occupational Health, part time to obtain work life balance. Hours were 21 in Jan 22, increased 24 in Aug 22.
Was Peri now Post Menopausal. No HRT medication taken.
Combine PMR, Prednisolone and Menopause together, its an interesting mix.
Work demands i voluntary increased hours to manage, and personally, partners parents last 2 mths both in hospital,
Anxiety body on edge, racing, never feeling calm, day to day life has felt high paced and non stop where you want to press the pause button.
Routine eye test end Nov22, a small dot haemorrhage in Left eye. Surrounding retina was flat and healthy and no breaks. Prescription change +1.75 in each eye to +13.75, new glasses ordered. Suggest seek a general health check up with GP to rule out any underlying hypertension of diabetes.
Drs visit blood pressure, diabetes ok ESR 60 CRP 22 (note prev May 21 ESR 5 CRP 2 ) advised increase steroids 15mg 1 week then return visit, Noted had chest infection last week which could affect bloods. Referred A&E eye hospital, potential GCA, tested, eye pressure ok, no headaches, etc.
Anxiety levels high since as worrying potential GCA, scared of losing vision. started having floaters , increased blurry focus , weds last week white intense cone flashes, rang Opticians referred A&E Eye Hospital,. Blood results ESR 47, CRP 4. Specialist from clinical data ,my age, and no soreness, headaches etc. suggests not GCA, that blurry , floater eye issues migraines. To rest and seek advice from Rheumatologist. I am currently unfit for work.
Blurry vision after a week of rest, no mobile phone, no reading, discovering audio books and realising how phone /tech focussed we are to do anything.
I would welcome your advice
I was on 1 mg every other day,until 2 weeks ago.
Started 15mg 5 Dec 1 wk,
Rheumatology team advised reduce 2.5mg every 3 days until any pred symptoms come back.
Dr following NICE advised 15mg 2 wks, 12.5mg 2 wks, 10mg 2 wks.
Symptoms, body constantly feeling nervous tension, (slow breathing to control this) , minor stiffness wrists from time to time, in morning very slight stiffness to glutes and clears once i start moving.
Im confused, anxious and want to do the right thing with regards to my prednisolone. Ive had no previous flares.
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maxistar
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I do sympathise you have enough going on in your life to produce this free floating anxiety that fastens itself on to anything handy, I’ve been there. What with your partners parents and their anxiety, the menopausal symptoms ( I doubt you are through it yet). I would definitely opt for HRT if I had my time again, the press was full of scare stories in my day. GCA and the potential for sight loss is a source of anxiety for us all. You are doing all the right things. I see a well equipped optician every 3 months and I have GCA/LVV but not in my temporal arteries. I pay privately for the reassurance ( I had two grandmas who lost their sight).
As far as work is concerned, how is doing extra unpaid hours to cover the workload, contributing to work life balance? Can you negotiate a job share? You are obviously a meticulous and dedicated employee. It is, however, their problem.
Your symptoms may have partly come from your Adrenal system, that is recovering from having been switched off by steroids. I would urge you to see an Endocrinologist and be tested for Adrenal insufficiency ( Synacthen Test or morning cortisol test). They can also advise on HRT ( well mine does).
1 mg of Pred every other day would not have suited me. I used a pill cutter and reduced in half mgs. Gentle reductions suit Adrenal recovery. I would follow the advice of your Rheumatologist and possibly rest at 5 mgs until you have had your Adrenals tested. Ask them for their opinion. Specialists do tend to work in their own silos.
Well done for ditching the technology for now. Audio books are my sure fire way of getting to sleep. I listen to BBC Sounds as well. There are helpful meditation and mindfulness tapes that might help the anxious feelings. Acute illness tends to knock us about more than people without autoimmune diseases. You will be feeling all of that. I hope some of this helps, anxiety is a rotten feeling. 🌻
thank you Sheffield Jane for your understanding, and guidance, without this group support im not sure where i would be in relation to managing my PMR. As with many, having your first flare after taking such care with tapering is hard to take. I can see on reflection how i have pushed things with doing extra hours at work to strive to do the best for them, but to the detriment of my own health, you just want to do something well and prove to yourself what you can do after such a period of time you can feel so incapable. I am working with my manager in the new year on how we can get that balance that i can feel that sense of achievement without putting myself under the pressure. The mental aspect of managing PMR and Menopause, has been a challenge to me. My body has changed so much i feel i am having to get to know me again.
The thought of losing our vision is scary, and how can we imagine how it was for your grandmas to lose theirs. By having regular checks puts out minds at rest and i am going to do this also. I dont now about you but i havent had such a focus to be on myself in my life until the last few years, putting energies to me than to others, its not something i find a natural thing to do.
Again thank you for the recommendation of Endocrinologist i am not sure if this is something that the NHS/Rheumatology team can recommend or if it is something i have to do private. I have a phone appointment with my Rheumatologist later this week as overdue my six monthly assessment and will discuss with them.
Your response has really helped, you are a constant support to so many and i thank you for all your time you spend to support everyone and I am truly thankful.
"Rheumatology team advised reduce 2.5mg every 3 days until any pred symptoms come back."
I'm not clear how they think that will work -you are never at a dose long enough to know if it is enough. I would say every 3 WEEKS. NICE suggestions aren't very realistic either. But you have to either slow down that taper to what I suggest or you have to trust what the doctors are saying.
I did wonder how every 3 days would work in such drops, and dropping to 7.5mgs i have had increase in symptoms, including wrists aching and shoulder ache. Is my adrenals or the flare i dont know, would you suggest increasing to 10mgs again and then gradually decrease 1mg every 3 weeks.
Thank you to you for all the support you give to so many on this group you are a constant support and the time you give I am truly thankful.
If 10mg is enough - yes. That is a far more sensible way of going about things. Most tapering protocols do say 1mg/month from 10mg but for some patients even that is too much.
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A couple of GCA questions
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Reporting back after hospital clinic and taper regime
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