GCA

[Belinda1963]

Will I ever go back to work?

[PMRpro Ambassador]

People do. How old are you?

[Belinda1963]

I'm writing on behalf of my husband who is 59

[PMRpro Ambassador in reply to Belinda1963]

Then it depends - and I should also have said it depends on what he does.

Most of us were/are past retirement age so it wasn't an issue. In the UK GCA counts under disability discrimination so the employer must make reasonable adjustments. But there will be some things you can't adjust for. And it depends on how unwell he is as well.

Others will be along later who have been there. I do know a couple of quite young patients who worked all the way through. It was hard though.

[DorsetLady PMRGCAuk volunteer in reply to Belinda1963]

If you gave us a bit more information, we might be able to answer the question, How long has he had it, what dose did he start on, what is he on now? What are his symptoms/state of health at the moment. What’s his job?

[TooSore]

I am working with PMR but at times it is quite difficult. Ups and downs are usually caused by a schedule that gets too busy or life gets too stressful. Medication levels and the activity level of the condition itself can also upset the applecart. I seem to be prone to myofacial knots so sore muscles can get in the way. I think the question of work is as individual as the disease itself and where a person is on their journey. It helps if the job has some flexibility built into it for those times when you need to rest. I do find that I typically don't do a lot during the week. And if the week is crazy, then I don't do much on the weekends. I should add though that I am two years from diagnosis and down to 2 mg.

[SnazzyD]

Hello, at 54 with GCA since March I'm asking myself the same question! I don't think it can be answered for certain because we're all different. I gather men do better with this. Depends if the body can cope with the stress without relapsing. My concern is whether one can spot the wheels falling off the wagon before it's too late and it is back to square one. I don't know if I'll have the confidence to risk it or the energy to do it. Still early days though. Good luck

[SheffieldJane]

Oh Belinda! How can anyone tell you that. A number of people hold down jobs and or major caring responsibilities with these conditions ( God knows how). On the right dose you can be fairly mobile but you still have to pace yourself and rest a lot. What's your diagnosis and how long do you think you've had it. What is your job - can they adjust it to suit your present state of health?

[Hindags]

I'm 76. PMR 10 months. Down from 20 to 9.5. I am a psychologist with a private practice. I've been working three days a week since I left my clinic position some 8 years ago. I've been able to work through PMR so far. I got lucky that my acute phase was at holiday time and I was diagnosed very quickly. 20mgs handled my inflammation quite well.

I worry now because I do think it is getting harder as I go lower on Pred. I am limiting myself to 6 hour days, starting no earlier than ten. End no later than 6:30. I'm lucky to be able to set my own hours.

I wonder what to expect from here. Does it usually get worse? More pain with each taper? Longer time to stabilize? I've read that flares are more common as we taper lower. I cross my fingers that Actemra will be approved for PMR so I can have a chance to fight for it with my medical plan. Don't even know if that makes sense. I don't want to start flaring, cycling or getting stuck which would probably be the preconditions for trying Actemra.

Meanwhile I keep on keeping on. My office has always been a serene and energizing place for me. I've been blessed. Not quite ready to stop, may not be able to go on. Have to accept that PMR & Pred are in control now. I can try to eat right, pace myself, stay emotionally centered, exercise, say no to other things I really want to do because it Is a balancing act.

And I know that so far I'm really lucky.

Phew. Apologize for this long rant/ lament. But it feels pretty good to express it all.

[PMRpro Ambassador in reply to Hindags]

Flares SHOULDN'T be more common as you taper - if you taper properly, You are NEVER aiming relentlessly for zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. Period.

If you try to force a reduction - you will flare. End of...

[Hindags in reply to PMRpro]

Thanks for the reply. It's reassuring to think that flares needn't be more frequent at lower doses as long as we taper to the lowest dose age that will handle our present level of inflammation/symptoms. But I guess I don't know what "handling symptoms " means.

For instance, Per my Rheumy I went from 10 to 9.5, but after almost a week I I was more symptomatic (My right shoulder has been more tender/the muscle a bit weaker and I've had a few more twinges in my groin no stiffness and full range of motion, energy ok). I told my Rheumy and she told me alternate 10 and 9.5 for a week which I did. And I do feel better this week than last.

I am due to reduce again. I do not feel quite ready. But then I think that maybe I'm being unrealistic in my expectations about how I should feel.

[PMRpro Ambassador in reply to Hindags]

If you don't feel ready - leave it a couple of weeks. It is NOT a race.

[lesley2015]

Hi Belinda - I was diagnosed June 2015 with GCA/PMR I was 56 - I struggled in a high stress managerial job for a year- made no long term reductions of preds so made the reluctant decision to give up work which necessitated making many financial changes.

A year on - I am much better but still on a fluctuating albeit lower dose and a steroid sparer Still not well enough to work and I don’t think (feeling as I do now) I would risk any stressful job now- not sure how I could face going back to square one!

We are all different so it will depend on how your husband is- men apparently recover more quickly but it has shaken my confidence so he may feel the same.

It’s not a quick resolving condition unfortunately.

Best wishes

[Rokerman]

Hi Belinda - you’ve seen from others’ comments that we’re all different, this confounding condition affects us all in slightly different ways and so we can only recount our individual experiences.

I’ve just turned 70 and have been diagnosed with PMR (after a very short while in agony, unlike many) since April last year. I wasn’t ready to give up my Consulting Engineers practice and was very concerned initially as working was impossible. However, after a month or so on Pred (and I must say with very understanding Clients), I was able to operate at about 80%. Before diagnosis, I had to get to site by being driven by my wife and staggering up the site entrance to my meeting.....!

Having tapered down in the intervening months from 20mg to 5mg, I would say I’m now operating at 90%. It’s true that I don’t look forward as much to being asked to visit site and look at the latest uncovered problem, deep in a roof structure(!) but I can generally get round most things.

So, without knowing what your husband’s work entails, I would say that it could well be possible to carry on working even if it’s necessary to modify arrangements if he’s able and above all, not to rush back to full-time before he’s ready.

Best Wishes to you both.