Just diagnosed with PMRA. Anyone successfully negotiated working full time with this conditions?

Hi Caroline like yourself I have just became new to this forum and feel great with all these super ladies giving me great advice.  I had Polymyalgia 5 years ago with sucess for a long time not even using steroids an occasional flare up contorolled by Ipobrufen but a few weeks ago it got so bad I went to doc last week and am same as yourself going for more blood tests and on Presidone 40mg daily which after 4 days has given me a great relief, a wee bit twingy in my arms but obviosly I have been on a cleaning frenzy because I feel so good.  I hope you get results soon like myself the ladies on the forum know what they are taliking about having the same pain.  Take their advice, I have. good luck

Caroline:

I wish I could tell you that it would get better once the pred kicks in but it probably won't.  From all the people I have chatted with the fatigue and lack of stamina is a major side effect of PMR and the pred.  I am a tennis official and found that this issue caused me to stop working lines at tennis tournaments.  I tried exercising, working my life cycle but I could not gain any stamina.  This doesn't happen with everybody but it is more common than not.  Good luck

Tony

Caroline, we always feel sorry for those who have to work with PMR/GCA.  Unfortunately, it is 'normal' to feel how you describe especially in the early days of treatment.  Yes things will improve as the steroids get more control over the inflammation but being in a stressful job will slow down this process.  It is important to remember that the steroids are not curing anything, they are just controlling the inflammation that causes the pain until PMR goes into remission.  That can take anything from around 18 months to two years, and for many people more than three years.  It will help if you can have a longer period off work in these initial stages, and then perhaps try a gradual return, slowly building your hours back up again.

Caroline, I have had PMR for 8 months and no signs of it getting better. I started at 40 mg prednisone down to 15 mg today PLUS taking 5 pills a week of methotrexate. If I am several hours late taking my prednisone the pain and weakness come back roaring back  very quickly. Even when I was on 20 mg aday I had to have steroid injections into my shoulders because I could not lift my arms past my waist. I work full time ,but my work outs and other activities have been curtailed tremendously. My Dr. tells me it may take two -three years for PMR to quieten down or to go to sleep. My Dr. has reduced my prednisone 2.5 mg each time we did a reduction and it takes a couple of weeks of some discomfort to get used to the reduction. The weight gain and sleep apnea are the worst side effects for me because of the prednisone. Good luck ,I would not wish this disease on anyone. Ken

Hi Caroline, what can I say, some PMR sufferers suffer quite badly with fatigue, but I never have. I'm also 53 and was diagnosed 16 months ago. I'm now on 9mgs and on the whole feel fine. some patients have commented that their fatigue cleared up on the lower doses? Others say that all of a sudden, out of the blue they began to feel much better? Unfortunately PMR effects us all differently. 

However, I'm so glad that you seem to be making encouraging signs of relief already. Honestly, things will get better, but you are in for the long haul with this condition.

don't let the powers that be make you taper to soon. Look up the Bristol PMR plan then when you get to 10mgs, which will be for a while yet, follow Eileen's slow, slow plan. All the best, christina 

Hi Caroline welcome to the forum . You will get lots of good practical advise on this forum .Elaine who knows everything there is to know about PMR and Mrs O who has been there and done it . She has been clear for some time now and is there to inspire us all .

I was diagnosed in November 15 .It took me 3weeks to get in a good place with all the aches ,and felt good . When you start to cutdown your steroids people who know sujjested we drop as slow as possible at those times .Good luck Carol

It's all been said so I'll just give you some reading to do for homework 

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

This post has a load of links to other support sites and medical papers about PMR.

I worked with PMR and no pred for 5 years - but I am a freelance translator working from home. I know others who are teachers or classroom assistants have struggled. If you need to work you will probably need a bit higher dose to manage the symptoms but it will take up to a couple of months before you really feel up to a lot and it also depends a great deal on what subject you teach and your teaching style. And the pred MAY give you brain fog if the PMR hasn't - or there could be a double whammy. I'd take time off until at least after Easter and then discuss it with the head. However - have you got exam classes and is the curriculum finished? If so and it isn't - is just doing those classes an option? 

You will feel normal again - just not yet. The pred does nothing for the underlying autoimmune disorder that causes the symptoms we call PMR and it is that that causes the fatigue. And you can't hurry PMR, it comes when it likes and goes when it likes.

Hi Caroline and welcome to the Club💐. I was diagnosed with PMR over 2 years ago and because I was to impatient have had to recently increase my pred from 4mg to 10mg.  The most important thing you will learn from this forum is that you need to be very patient and reduce your dose of pred very very slowly. 

I was the manager of an insurance office and used to love my job and the people I worked with. Prior to being diagnosed I was in a lot of pain and wasn't sleeping well at all.  I soon became impatient and just didn't want to be at work. Once diagnosed I was almost pain free but still couldn't sleep, was still grumpy with tears thrown into the mix. I started working only 4 days a week and that was even hard. It was a fairly stressful job and I finally took retirement early.  I am 65 and realize that most younger people don't often have that option.

I think it is important that the people you work with know about your PMR and, even though you may look the same as you always did, you are not that person right now.  You may need to change your hours of work to rest because once the pain is managed many of us find fatigue the worst problem.

Sorry, all this sounds awful but you will find that once our get your pred to where your inflammation is managed you can do many things albeit at a much slower pace.

AND there is always Mrs. O, our beacon of light, here to show us PMR will go away if we follow it's rules.

Wishing you pain free days and sweet dreams.

Diana🌸

I have had PMR and GCA since October 2013 Tried to reduce too early while I was working full time, (I am a chef) but had major issues and was fired...no particular reasn given but I obviously 'looked different' I was getting the lead suit look after 4 pm and a bit bad tempered....boss said they had never heard of PMR and it wasnt a dissabiity !

Luckiy I had only taken the job as a temporary measure while my company went through a dead phase... I am now doing about 3 days a week but very intensive... Last weekend I cooked for 30 people at a country house weekend Big 21st birthday party... I am 71 so not doing too badly... I still get the 4 pm exhaustion and lead suit/coal bag coshes....I sort of manage but all days are different... When I get a big job I seem to make enough adrenalin to enhance the Preds and manage to get through but the come down for 3 days after is so painful.

 

When I was diagnosed the rheumatologist gave the impression that with the steroids I would be back to normal again within a week or so, I discovered this is not true. PMR is not something that disappears after a few days sadly, even with the wonder drug pred, PMR is long term. I was working full time and was exhausted just talking to people on the phone some days.  I have slowed down enormously and still get very tired, particularly in the evenings. The real trouble I found is that people think that you are now "better" and can carry on as you did before. 

Sorry for this ramble if you've worked all this out already. Otherwise I hope it helps. And writing it down helps me. The positive bit is at the end - its like exam advice, read to the end before starting :-)

It seems to take time. Time to adjust to the PMR, to recognise the symptoms and separate them from anything else that's going on. Time to adjust to simply having a chronic condition. Time to understand how its effecting you (because you are different to me). Time to find the minimum dose of pred which just adequately suppresses the symptoms. Time to recognise and adjust to any pred side effects. Time for those around you to adjust. It changes over time. And time for it all to go away.

Its a chronic condition, not an acute one which can be fixed with a course of whatever. Sorry, there isn't a quick fix. For some it may be hard to accept and get used to but I suspect its an important step to managing.

I've been working from home - computer system. I'm 65. Male. The "brain fog" and mood swings from the pred have been hard to contend with but relieved at lower doses (now on 6mg/day). And of course I can stop working when I want each day. I had to learn to walk away from conversations (instead of becoming frustrated and angry).

The "brain fog" (pred brain) manifested itself in part as a detached feeling, I lost my reference point, didn't know if I was high or low or what. Floating. Not grounded like I usually am. Very disconcerting and unsure how objective my judgements were. It will be different for you and hopefully not occur. Short term memory was effected - I've had to take notes for the second time in my life. Problem solving not as easy. Concentration drifted. Better as my pred is reduced.

Some of my pred highs were like being in a low grade goon show or a continuous Monty Python sketch. Strangely enjoyable, but I warned people I was "feeling silly".

My fatigue comes and goes. I can sense a difference between physical and mental energy. Some days I simply couldn't concentrate and no amount of forcing would get me started. It would have been difficult to face a classroom. Some days I simply couldn't physically carry on - mind willing, body not.

I was undiagnosed for about 4 months in reasonably stressful conditions (independent Asian travel) with no practical way of stopping. Once diagnosed (stopped travel) it took time for me to work out what was happening to me.

Anything chronic can be like walking into a brick wall in life. Suddenly everything changes. For me, among other things, not having enough energy left over to attend to people things meant lots of conversations and moments went haywire, left me wondering "how did that happen". The more fatigued the more haywire. I'd been there before, about 25 years ago with a different condition but that only helped me recognise what was occurring, it couldn't make it go away.

With previous condition surgeon said "if you dug roads I'd give you 6 months off but an office is ok". Bad advice, big mistake going back to high pressure project office too soon. Leading a meeting of 25 people to a conclusion which was easy became difficult or impossible when not fully mentally alert. Destructive for all.

Difficult to describe the frustration at not being able to do some of the things I used to, or as easily as I used to. But not enough energy to waste on being frustrated so don't bother. Manage it.

So, time to see what the preds do. Time to adjust the dose and hopefully start reducing slowly. When reasonably stable and a bit more used to whatever cards the PMR and pred have dealt you ease into work slowly. One class at a time. At whatever speed works, but going too fast creates problems. Like being swallowed by a snake in snakes and ladders.

After nearly a year of pred I'm far from "normal" but my condition is manageable.

Important step is/was talking to those around me. Not to extract sympathy. Simply so they knew that something was happening. I'm guessing an important part for you would be discussion with school head - so he/she/it can help. Spouse and family.

Basically for me it was about learning how to manage my self and my life, all over again. And that takes time.

All this sounds negative. Its not. Just trying to describe the journey. If you know what may happen its easier to recognise it when it does and then manage it. But take time to make sure it really is happening rather than imagining it because you read it somewhere. Your journey will be different to mine.

The positive side is its all manageable. I didn't consider the alternative. Just a case of taking the time to work out how for your condition and circumstances. There isn't a goldilocks spot where everything is "perfect" or "normal". Its not a balance between pred and pain. But there is a combination of PMR suppression, reducing pred and activity which will work for you.

Just an example. Not really a different day. On Friday I started at 6am, drove one hour to a 4 hour high pressure project meeting, drove back, did some work on my truck, a half hour of gardening, and I was still restless until going to bed early at about 20:30. A bit achy. Saturday frustrating with 99% humidity (Australia) which turned to rain so not a lot done by anyone. Six months ago I would have gone to bed on return from the meeting. 9 months ago I would have got someone else to drive me and stopped the meeting at less than 2 hours.

Thank you to everyone who has taken the time to share their experience with me and to offer advice. I'm starting to understand now that the first part of this new existence I have involves acceptance.  It's been a bit of a shock to be honest, as I'm sure it was to all of you. The thing that scares me the most right now is feeling that I've lost control over my life. It's reassuring to know that it's not forever though, and I know that life can deal you a far worse hand. I'm grateful for the relief from some of the symptoms I have had so far, I'm grateful that my doctor seems so switched on and seems to understand this condition. I'm grateful too to hear that some of you have found ways to manage your lives so well. It gives me hope. As far as work goes, I'm going to see the doc on Monday and arrange a few more days off to take me up to the Easter break. As well as teaching, I'm also in charge of a large Sixth Form, and run a team of 23 staff. Going to spend some time trying to be realistic about what I might reasonably be able to do and have a very honest talk with my Head. I can see that this isn't a case of me learning to "manage" a condition, more a way of learning to live with it while it runs its course. Thank you all again. You have made a real difference to how rubbish I was feeling earlier.

simply pace yourself,

someone had a spoons model ..

I use whatever metaphor comes into my head - imagine a bucket full of energy at the beginning of the day, use it up early and there's none left for later, use it a bit at a time and get to the end of the day. Easy really ......... at least easy to say, not quite so easy to do!