Haven’t posted in a while but on the forum everyday.
I started tapering from 15mg Pred about 6 weeks ago now! a week before starting on 12.5 I did every other day 15 then 12.5 and felt ok no issues I stayed on 12.5 for 3 weeks went back the drs before starting next taper to make sure all was ok and did the same 12.5 then 10 for a week again no issues so started 10mg last week the same week as started back at work full time after 8 wks return to work.
After 3 days I was wiped out and woke on Saturday with the familiar pains in legs bottom and arms so I went back up to 12.5 after reading on here about now allowing the inflammation to build up.
I work in an office and have a commute from north wales to Liverpool OH drops me at the door for 8 in the morning and I get the train home I’m starting to really worry that I won’t be able to handle full time hrs, stress levels are starting to rise which isn’t helping as I’m also learning to drive and have my test booked for next Friday I’ve been learning on and off for 33 yrs since I was 17 I’m 50 in January 😊
I can’t take anymore time off sick as I’ve reached the 6 months mark before going on half pay I had 2 disks removed and my cervical spine fused in April drs think it was this that triggered the PMR.
Thanks for reading and listening x
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Angie6969
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Tapering AND going back to work at the same was probably far too much - almost everyone who has to work needs a bit more pred than if they didn't. The stress is also going to contribute a lot. Was a staged return to work not an option? And have you involved Occy Health in this return?
I did phased return for 8 weeks as dr wouldn’t allow me to return without it and work to be fair have been very good, I work for Openreach {BT} OHS were involved in my Health issue regarding my operation but we haven’t involved them in this as yet I’m back In Work tomorrow and will ask for another referral to them. I have been allowed to work from home in the past but been told can’t anymore even though a colleague who has fibromyalgia has worked from home full time for the last 3 yrs since we were all moved to Liverpool from Chester office.
And to top it all my Line Manager is leaving at the end of the month ☹️
"... but been told can’t anymore even though a colleague who has fibromyalgia has worked from home full time for the last 3 yrs since we were all moved to Liverpool from Chester office"
Hmm - that would seem to have set a precedent you'd think? Or was that because of the forced move?
I think because they had OHS involved it was made part of their agreement, I’ve just remembered another colleague who has sarcoid is able to work from home when he’s not feeling too good, I had sarcoidosis when I was 21 I did have a chest X-ray not long ago just in case it was that that had come back.
I’m going to ask for a meeting with my senior manager I think 🤔 as you have rightly said a precedent has been set.
Good luck. GCA is covered by disability legislation - and PMR is the same illness just a slightly different manifestation. Sometimes I think it should be PMR that gets the big sympathy vote - often the disability level is higher and generally longer.
If someone is working at home with Fibromyalgia. It would make sense that you qualify, too. Stress makes this disease flare and energy low. Talk to your doctor about writing a note saying at home work is more realistic for you at this point. Maybe your HR Dept. has some paperwork your doctor can fill out. That sounds like way too much work and could make your disease worse.
Think you need to get back to OHS preferably with some paperwork from GP stating how difficult full time work is for you at this time.
Are you in union, if not might be worth joining and seeking their help as well.
If you are a valued member of the team (and I’m sure you are and with LM about to move) your bosses should be doing all they can to keep you! As you say, if others can work from home, why can’t you!
Please don’t take offence, but are you really sure you couldn’t manage on half pay for a while? At least you have that option, many in the private sector don’t. Health must come first sometimes!
Thanks for replying, yes I’m going to ask for referral tomorrow when I’m back in work and yes I’m in the union too.
They have been really good so far with me and I have also put myself out for them over the years traveling to train people the furthest I’ve been is India 🇮🇳 3 times totalling 6 months and all over The Uk 🇬🇧
My job could be done remotely as I’m no longer a trainer I had to change roles when my upper back problem became an issue but that was sorted out earlier this year and I would rather have that op again than this awful PMR any day of the week ☹️
Oh my. I’m not surprised you are trying to get back to normal, there are so many pressures to do so. However just reading what you are doing or have coming up makes me break into a sweat. Back to work policies are not bespoke plans allowing actual periods to recover, it’s a balance between getting the employee back and financial burden for the employer. They certainly don’t, as a rule, allow for long term conditions such as this. Once your 8 weeks is up, doesn’t mean to say you’re better, far from it. This is an autoimmune condition and the Pred is there to stop damage, not cure you. When you are up there around 10mg you are still protected from sleepy adrenals; you still have that coming. Below 5mg I’ve found that withdrawal/adrenal probs don’t even out until 6 weeks from the start of the reduction as opposed to 2 on higher doses. What I’m trying to say is that it may be worth just starting to get your head around plan B. What you are doing would be tiring for a healthy person, but it may be that your body can’t cope with all of this right now and for a year or two. Sometimes having a plan B if your body tells you it seriously can’t cope, takes off the awful stress of thinking there is no way out. Bodies have a way of creating a crisis if you don’t listen to them.
You have had sound advice Angie6969. The commute alone sounds killing. Do you have the kind of job that can be done remotely? More and more firms are doing this. Some even getting rid of their premises.
If you could design the perfect scenario to keep your job, what would it look like? Employers love to be presented with solutions, not problems. This disease gets better, you are years off statuary retirement age. Get them to invest in you! Good luck and confound everybody and pass your driving test. BELIEVE! 🍀
It has just occurred to me: half pay is not really half pay. Your deductions fall too and you have far less in terms of costs - no commute for a start. It's a bit like retirement has been for us - suddenly we have a lot more money than we expected!
I had GCA 7 years ago and with the help of OHS I did a role swap.
5 years later I developed PMR again with the help of OHS I was moved to an office environment. No more shift work - 6am starts, 1am finishes and 12 hour night shifts. A lot less money but as PMR Pro points out my deductions are less.
Before I was commuting to France to work now I have a 15 minute drive.
I feel so much better for these changes.
Yes I may have PMR again but I am confident with my lifestyle changes I will be able to manage it.
I had to go back up to 15mg pred for a few weeks which seems to have got the inflammation under control and I’ve been using up my leave {6 weeks} taking the odd days here and there that seems to have helped a bit still very tired when I get home.
Ive been told for the foreseeable my job will stay the same which I’m pleased about as it’s less stressful than my previous role.
This week I started 12.5mg and so far so good no aches or pains, I’m back at the drs on Friday to check how I’m doing.
Will just have to see how it goes it’s all been documented In work and if need be I will request a face to face referral with OHS.
Pleased that the changes you have made seem to working out for you.
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Sorry Tapering question 🫣
Back to Work??
Struggling to get a flare under control. What next please?
Curious... some of my symptoms have improved a lot since a 3 day water fast last weekend. And, my ESR dropped "back to normal" (doc) 
Flare has subsided--now what?
