Should I retire or cut down drastically on activities or will I then be bored and still sore?

[zorroaster]

I have had PMR for nearly 2 years I started on 12mg Pred and I manage to get down to around 7mg with slow reductions and then it kicks in again. So I have been going up and down around 7 since before Christmas with blood tests showing a CRP of around 20 when I am aiming for 7. I have job I really love which is 3.5-4 days a week and it can be stressful plus I have a variety of other activities like an allotment etc. I am 65 and could have retired at 60. The question is would I be more likely to get over the PMR if I cut back drastically or retire or will I just be bored and sore with nothing to distract me from the moderate pain? Have others found that cutting back or retiring was the answer or did it not make much difference?

[piglette]

If you enjoy what you are doing I personally would carry on, if you give up you may become depressed and miserable, which is probably more stressful than working and gardening. I do both. Working and gardening not being depressed and miserable! The important thing is to recognise you are not one hundred per cent and plan your life around it. Would you feel better on say 8mg?

[DorsetLady PMRGCAuk volunteer]

Hi zorroaster,

what is the level of Pred you feel okay at? Suggest you go back to that, and stick at it for a good while before you try and reduce again.

You don't need to give up all activities, but you do need to pace yourself, both physically and emotionally (perhaps your job is too stressful at the moment?). Any chance of less hours, or would it mean giving up altogether. Which I guess you don't want to do if you really enjoy it.

My GP is not too concerned about blood tests, he always maintains that lots of other things can make them ride high not just the PMR, or GCA in my case. His criteria for reducing the steroids is how you feel in yourself. Perhaps you are worrying too much about the readings, that in itself could escalate them.

You may need to evaluate your life somewhat, and certainly you need to take care of yourself, but that doesn't mean you have to give up everything - just prioritise things!

I had already retired, but was caring for my late hubby when GCA struck. I don't think I could have continued working at that time.

Good luck, DL

[Celtic PMRGCAuk volunteer]

zoroaster, if your CRP continually increases to around 20 each time you try to reduce the steroids to around the 7mg dose, you obviously need to remain at a dose just above that ie where you last felt comfortable) for a considerable time before trying to reduce further. When well our adrenal glands produce around 7mg of natural steroid (cortisol). This production is suppressed by the Prednisolone, so when we reach doses around 7mg and below, we will have a shortfall of steroid in our bodies until the natural steroid production catches up. Many people who have problems reducing from around this level, try reducing by just half a mg at a time and they are finding it more successful.

People who work with PMR can find that it takes longer to reduce their dose due to the stress and not being able to give themselves sufficient TLC. As you love your job so much, would it be possible to either reduce your hours for a while, or take some sick leave, at least until you have got over this latest hurdle?

[Polywotsit PMRGCAuk team member]

When I was working full time with PMR I finally 'came out' and went to see Occupational Health. The person I saw was great. She said to me, "You have a serious illness. Most people who have a serious illness take a couple of weeks off sick. You can always do that you know." It was like a revelation to me. I honestly hadn't even thought of taking any time off. My idea was that the steroids should have me back to 'normal'. Over time I came to terms with it and realised that I did need to take better care of myself and ease off a bit. But not give it up!

[zorroaster]

Many thanks that's all really useful and does fit with what I've been thinking. Initially I took things pretty easy but it has gradually crept up and have indeed been thinking that the steroids will mean I can carry on as normal! I gave myself a fright this week after a busy few weeks and then reducing to 6.5 which led to aching head, arms and shoulders and slightly blurry vision. I've taken 7.5 pred this morning and will book some holiday to be spent at home mostly relaxing. I think part of the problem is that the steroids make my brain whizz and so I want to do everything and the body doesn't keep up and then complains. Right time for work! Thanks again.

[Parijm]

It's interesting to read the posts on work/life balance. I have had PMR for a year and cut back to a 4 day week since January. I am struggling to reduce but currently at 10 mg Pred which doesn't take all the aches and pains away. Hard to get moving first thing but having to get to work concentrates my mind. Often I struggle more with aches and stiffness at weekends when I am taking it easy. I feel I would like to give up work but unsure if it is wise. No going back I suspect! However taking sick leave makes me feel guilty. I was interested to read Kate Gilbert's comment on taking a couple of weeks off and I wonder if I should seek advice with Occupational Health also. As ever I find great support from this sharing of problems.

[Runrig01]

I was 47 when diagnosed with PMR, working busy 12.5hr shifts as a ward sister. The Rheumy who diagnosed me did warn it would probably take me longer to go into remission because of the busy lifestyle I had. Like you Iove my job and wouldn't consider giving it up. Like Kate I seen OH, who said I should not work night shifts, and do a max of 2 days at a time. This has worked for me for the last 3 yrs, however I'm presently on sick leave with GCA flare. Took 2 yrs to diagnose this. But I'm still on a mission to get back to work 😃 get the balance right and you should be fine. Good luck

[SusanneM]

I'm in the same conundrum. I had PMR for 5 years and managed to work throughout. I was then diagnosed with GCA in December 2014 and apart from a brief 3 week period when I returned to work for a few hours each day, I have been on sick leave, as I'm just not well enough to do anything.

I too love my job. It's full-time and very busy. During my gradual return, I caught a bug in the office, which turned into a very bad chest infection and I ended up in hospital for 3 days. This infection has set me back considerably and I'm currently back on 40mg Pred.

I'm seriously considering whether to give up my job. It is so much part of my life, but I wonder whether I will ever be able to cope full time. Being a bit of a perfectionist doesn't help either! I have hobbies I could develop more, but will it be enough? I'm scared I'm going to become depressed being at home all the time.

It's a tough decision and I too feel guilty having to take so much time off. Is it fair to keep work hanging on?

[DorsetLady PMRGCAuk volunteer]

Hi again,

To all those worrying about whether there is life after work, please let me assure you there certainly is!

I was already retired when I was diagnosed with GCA in April 2012 so didn't have that conundrum to worry about. I don't think I could have worked as well as having GCA and all its problems although I was a carer for my late husband, which is very tiring at the best of times. Until the last few weeks of his life we made sure we went out somewhere every day, if only for a coffee and a natter with friends. Ok, I do live a lovely part of the country which helps.

Now that he's gone, I make sure I still get out every day, whether for lunch with past work friends, window shopping, enjoying the scenery, alone or with new friends. I go swimming, do my garden (at least what I can), crossword puzzles, read books. The only think I can't do anymore is walk very far - blasted arthritic knee, which makes me cross! The list can be endless, if you want it to be. Okay, some activities cost money, which may be an issue if you are not of pensionable age, but there are lots of things you can do that are free or only cost a little.

You have to look around and do what you can.

Most people I know who are retired often wonder how they made time for work! I know I do. Get out there and enjoy it whilst you can. As my husband always said - this is not a dress rehearsal, you don't get a second chance! So enjoy! DL

[SusanneM in reply to DorsetLady]

Thank you Dorsetlady. It's made me think more. Still not made up my mind, but it's food for thought.

[PMRpro Ambassador in reply to SusanneM]

In case you don't see my reply to DL (I never know who sees what in this forum!)...

I can thoroughly recommend retirement - it is what you make of it and is nothing like as stressfull as work! And if your income is smaller - so are your outgoings.

[SusanneM in reply to PMRpro]

Thanks. It's very much on my mind at the moment. Working on the sums, both financial and in terms of mental ND physical health.

[PMRpro Ambassador in reply to DorsetLady]

I can only echo DL's comments. We took early retirement but still do some consultancy - but you can always say no there.

You have now - there may not be a future. That may sound very miserable - but my husband had cancer 21 years ago. He should be long dead but it didn't get him then. However, he had chemo, surgery and radiotherapy. The chemo left him deaf, the surgery left him with some pain and only 1 lung (no, it wasn't lung cancer) and the radiotherapy messed up what was left of the lungs and is now beginning to manifest in other ways. We have no idea what will happen - mid-60s and we may have 5 years. Or we may have more.

No way to know so I go for jam today...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

PMRPro,

I'm always amazed at how similar, yet different, our lives are. My husband's first foray with death was 18 years ago, following triple bypass, which he wasn't expected to get through the night. I was 80 miles away, and couldn't get to him, so my son sat with him all night talking and praying (for the first and last time). Well he did survive and spent 5 further days in ITC. He had 2 further trips across the other side, both whilst having angiograms, and another incident 6 months before he died when he had a massive haemorrage.

You obviously know the NHS from the inside, and I know it much well from the outside looking in!

But our philosophy seems to be very similar, live each day as if it is your last. That certainly was my darling husband's after all his problems, and he definitely was the one who got me through my difficult times with GCA et al. And it's his thoughts and love that get me through now he's not here.

[PMRpro Ambassador in reply to DorsetLady]

It really does change your outlook doesn't it? And the biggest difference it has made for me with PMR/GCA has been - it doesn't threaten to kill like many other diseases, yes there are risks with both of vascular damage but the long term risks of either and pred are relatively minor compared with some cancer treatment or the shorter term risks of other procedures.

I've never really decided which is easier - to know or not know if you see what I mean. When David was ill he didn't want to know anything, that was my job, to learn all I could and work with the oncology department to make sure he got the best. He had 7 lots of chemo and after each week of inpatient treatment he had a week at home until the next. The GPs were just plain obstructive - he couldn't swallow pills and almost all the medication was available in liquid formulation. The first week they refused to provide it, saying it couldn't be done. I told the oncology team about the problem, they sent him home with the liquid versions the following week, the GP had to comply. Needless to say they were furious! And took it out on me and our daughters.

I'd rather be happy with enough to live than carry on working in pain and feeling ill just to afford luxuries - shrouds don't have pockets and how many people do you hear of who slog themselves to have a rich retirement and then die within months. And there are many people on the forums wailing about not being able to have the retirement together they expected because of PMR. At least they are still together...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

So agree. Something else we have in common, willing to fight our corner, and not afraid to say what we mean. Or as my hubby would say, "bloody bolshie women"! long may it continue.

Good luck to you and your David (lucky to have you by his side) . Sue (DL)

[PMRpro Ambassador in reply to DorsetLady]

Thanks Sue - maybe we could found a new political party BBW on the warpath...

[Mischevious]

Hi Zorroaster

I was diagnosed with GCA three years ago, needed eight weeks off work and was sent to see an Occupational Health Doctor before returning to work. His view was that there was no reason why I should not be able to work effectively although there was always a possibility of a relapse.

I have worked ever since although on some mornings it is not easy to get started but, like you , I enjoy what I do and do not feel inclined to stop although I am 70.

On my last visit to my rheumy, following a slight flare up, I asked if I should give up work, the response was, "only if you want to."

So, my advice is the same as that of my rheumy, keep going and enjoying your work but if one day you wake up and feel that you have had enough, that is the time to think about retiring, or perhaps reducing your hours.

[HeronNS]

Coincidentally I retired about six months after I began to experience symptoms, but about eight months before diagnosis. It was a winter from hell, weatherwise and I was virtually housebound and I can't imagine living through a time like that again. Strangely enough I found I could quite happily shovel snow, but could barely get out of bed, rise from chair, wash my hair, or even drive the car, etc. Strange. If things had been a little different I think I would have stayed in my job a bit longer. In fact I had already deferred retirement twice, and was over 67 when I finally cut the cord. BUT it sounds like you have other activities that will take up the slack if you retire, and in that instance I think you should seriously consider it. You will have more time to give your body the rest it needs, and you do indicate that the job you love is stressful which isn't a good thing for you right now. Good luck whatever your decision. I am sure you will make the right choice for you.