I recently had to double my dose from 5mg to 10mg. psychologically a biggie as I felt I’d gone back 2 years! But boy did it knock the pain into touch! Diagnosed April 2014 age 54. Lowest I’ve got to, and been able to stay at is 5mg. I’ve continued working despite the fatigue being really hard at times. I have a fairly challenging job and am starting to wonder if this has contributed to my flare. Does anyone have any info on being able to medically retire/ reduce hours? Also do I need to reduce using the dead slow method or can I come down a bit quicker? Often feel low and teary but have embraced the energy that I had for the last couple of days. Suffering a bit now!! What a bugger this PMR Is! Roller coaster eh? Really appreciate being able to post on here and wish you all some energy and pain free times. Thanks for reading.
Reduction after a flare: I recently had to double... - PMRGCAuk
Reduction after a flare
It must be hard to work with PMR. I don't envy you, but you have to do what you have to do...
As far as taper back to your previous dose, here are general guidance..If you bumped the dose from 5 to 10mg for less then 10 days - two weeks, it is usually OK to go right back to your previous dose + perhaps 1 step above the old dose ( not sure if that was 5.5 or 6mg) and see if that is sufficient to manage PMR symptoms. Although I understand that you are concerned about "lost time", we can only reduce pred as low as it is necessary to manage PMR. Sometimes one overshoots reduction and sometimes underlining activity of PMR increases, so it requires more pred to manage inflammation. I remember when I tried to explain to my rheumatologists how PMR changes, I compared it to ocean tides, ebb and flow. Sometimes it feels like it;s completely gone, and then it comes back.
Thank you. I have taken 10mg for 2 weeks and now on 9mg. Sounds like I could reduce quicker so will try 7mg. I was on 5mg. I have got down to 3 in the past but not for very long....! Ebb and flow indeed. Thanks.
I get pretty down when I have to go back up because of lots of pain! Feel like a failure.
Hi Jennykk,
There are a few people on here who have retired recently or are thinking about it so sure you will get plenty of advice.
As for your present situation re dose. I’m a bit concerned that you say that you embraced the extra energy, but are now suffering for it! That tells me you haven’t really learnt to manage your illness as well as you could.
PMR and/or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illnesses can be managed. To that end you have to do your bit, and that means easing your foot off the pedal. Unfortunately although the Pred addresses the inflammation side, it does nothing for the underlying illness or the fatigue.
You need to get things back under control, whether you do that by staying on 10mg for longer or/and moderating your activities, it’s up to you, but you do need to get a grip.
As for your reduction, once things are settled I wouldn’t recommend dropping back down to 5mg too quickly.
Thanks. I have definitely modified my lifestyle in order to cope with this Illness and ‘getting a grip’ is one of my mantras.... I have had to carry on working and earning so other things in life have had to take a back seat. This is a hard adjustment as you know. I work for a small family suooort charity but will look into pension etc. I am also looking into reducing my hours.
Good. I do appreciate it’s not easy to stop working, especially if it’s a job you enjoy, but your health is important, and at the moment that needs to take priority. Plus of course, we all need to finance our life.
There is life after PMR, so you might well find that once you’ve got through this period you can return to the charity on a more adhoc basis. If you look at in that light it might help you step back a bit - just for now!
You are brave doing a challenging job and it doesn't surprise me at all that you have flared. I am at 8mg for second time proper....I have accepted that if I can't get much below that it's fine. But I don't seem to have many unwanted effects and take a dmard.
Regarding retiring. Are you in a union or pension scheme? They will be able to guide you through issues like that as it is accessing your pension that is the issue. Otherwise you would have to do the route via sick leave etc. Into benefit system. Not pleasant dealing with DWP.
Thank you. Yes the dreaded DWP! I will look into the pension scheme. Also working on acceptance which I have been quite good at in the past! Good luck to you.
I think that working was probably the main contributor to your flare. You just can’t listen to your body, take a day of rest, leave some work until later when you work for someone else.If you work for a (biggish company who can afford to take action)and you are in the U.K. you are covered by the Equalities Act. The disability section states that if you have a condition that lasts 12 months or more and impacts on your day to day living you are entitled amongst other things, to have reasonable adjustments made for you at work. These could include, equipment, a change in hours,a re- written job role, rest periods built in, time off for medical appointments and anything else you come up with that could keep you in work. If you work for a tiny concern, you are still protected by the Act but they might find it harder to meet all your demands. It is still a series of conversations you need to have with HR or your boss. Do they have a retire early on health grounds scheme?
Retiring early with a private pension is feasible but needing money from the government is fraught ( just ask morrison about the hoops she was put through). The U.K. have placed many obstacles in the way of disabled people getting disability benefit. If you have a strong resolve and an understanding doctor you may well get there eventually. It is hard and stressful.
I feel for you returning to 10 mgs from 5. However, statistically this disease can last for a median of 5.9 years and it has to be treated during this time, throughout all life’s ups and downs.
I actually and unbelievably forgot my dose on Sunday. Stared stupidly at it in the pill box on Tuesday. I am on 7 mgs ( stuck actually, for now). I began to get severe low back pain, shoulder pain and worse fatigue than usual. I have gone up to 10 mgs. I hope to get away with this over the weekend. Then I will return straight to 7 mgs. If my body will let me, it was beginning a low level grumble anyway, so I may have blown it and will have to taper.
Good luck, be patient, talk to work, armed with facts about this disease. Hope this helps you.
Thank you so much for your reply. It’s very helpful. I work for a small charity and have some degree of flexibility but having to work when feeling foggy, tired and in pain has had to be done at times. The nature of my work. I am looking into reducing my hours. Good luck with your missed dose!
Oh I totally relate - the fatigue is just overwhelming and the not knowing one day to the next what things are going to be like. I have also worked all through this PMR - sometimes feeling I just can't go on or barely string a sentance together some days - then I put the pred up becuse of pain and I feel a little bit more human for a while. I will be kicked out officially at 60 - company policy - so I am trying to hold on til then which is now 9 months away! I came so close many times to having to pack it in so I hope to get to the magic date. I do also hope that when I finish - the fatigue will ease and like yourself help things generally becuse I really believe I got this horrible thing from severe stress over several years in work. (The sourece of it is gone now - but unfortunately the damage is done). Good luck with it all - if nothing else sometimes it really does help to know you are not alone!
Thank you and yay to reaching 60! It’s being able to rest when you need to that’s hard when working. Some weeks I just collapse and cancel everything outside of work. Good luck.
Don't think of it as 9 months...5 day week (180 days ) - minus hols or sick days.... You probably have less than 150days before odd days off are counted. Then you can have daily count down...gets you through each day.
Hi again Jenny,
Forgot to say previously, I know you regard going back to 10mg as a retrograde step, but don’t look at it like that. Look at it as a second chance to re-evaluate your situation, and seriously think about how you can better ‘manage’ your life. You’ve obviously already started that process by thinking about retirement or reducing hours, and that’s probably been quite difficult for you. Enforced retirement is quite scary, but as others have said discuss with your HR department, union (if you’re in one) and GP, or local CAB.
Good luck.
Thanks. I am looking into reducing my hours quite soon and the need to look at finances!
Find out about reducing your hours and retirement. Details need to be evaluated to determine what works for you. Stress and PMR are not a good combination.
There is no way I could work with PMR. However, my body is older than you...not my spirit. Rest, slowing down and simply doing very little requires a change of focus. I had a busy weekend so my week is relatively calm. I’m going to San Antonio, Texas tomorrow for 4 days so I need to save my spoons!
Let us know what happens. Hope it goes well.
You can probably come down a bit quicker - if it works, straight back to 5mg if you have been on 10 for only a week or less. BUT - bear in mind you may have flared because the 5mg is too low. I had been at 5mg and even slightly below for about 6 months at one point and suddenly had a flare. Which required 15mg to get the symptoms under control and it was several months before I got back to 8mg and I cannot get below, even after 2 or 3 years since the flare I really don't know which, 3 I suspect).
I worked - but never had to "go out to work" - I just had to stagger from the bed to the computer chair as I was a freelance translator. I couldn't have coped with a commute as well! And if I felt particularly bad I could take a few hours off without anyone complaining. But I had to meet tough deadlines - usually not of my making but the client's fault for having messed about or other freelancers not having the committment I had meaning the work arrived late for me - and muggins had to catch up the lost time. After one of those I was half-dead for a week - luckily my work was fairly intermittent by then!
People who have to work generally need a bit higher dose - so I would say you need to be somewhere in the middle between the 5 and 10. That is a physiological dose - about the same as your body produces in the form of cortisol every day and which is essential to life. If you are on enough pred - the body doesn't add any more.
PS - retirement is not as expensive as working - your clothes last longer and no commuting costs. I can recommend it...
Thank you! Sounds like a treadmill for you at times with your work. I end up cancelling or not arranging anything outside work and that’s not good for me either. I live with my teenage son so no adult support in the house. I do have some amazing friends who get it and some who really don’t. Some Want me to try lots of alternative stuff. Which can be great for side effects. I know I need the steroids but some well meaning folk don’t! I think I will try 7mg tomorrow. I took 10 for 2 weeks and just gone down to 9. But maybe could chance a lower dose and see how I go. And love the sound of retirement! Thanks again
Sounds like a plan Jennykk - and for me planning is an essential part of my life now or I feak out. All the best
Please don't drop that much that fast - you will risk ending up feeling even worse. Head downwards - but more slowly.
Would you recommend 2 weeks on each dose? Or maybe drop to 8 rather than 7? Thanks
I think 1mg at a time and at least a week on each, preferably 2. It takes time to be sure it is still enough - and you don't know whether this is an increase in activity of the disease which will mean you MIGHT need a bit more than before.
Hi
I can testify that not having to work certainly helps .I had an hernia operation in March doctor sighed me off work for 3 months .during that time my PMR felt better and was able to reduce the dose.
Back at work now getting up early 6am all achy .have asked for a 3day week think it will help .being a similar age 56 .
I do hope you can get a 3 day week. I am just negotiating to reduce to that from 4 days and do slightly shorter days. Haven’t worked out the finances yet but hey ho!
Good luck.
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