I was diagnosed with atypical PMR two and half years back. Being ill has disrupted my worklife seriously but I as I do freelance work from home I have sort of managed. Having reasonable deadlines has been crucial for my coping strategy. However I have just gotten a rather big assigment that needs to be completed within 3 weeks and I am afraid I won't be able to cope on my present level of prednisone - 7.5 mg. Is it an option to up my dose a little bit? How much? And what could the consequences be? Sorry to ask so many questions.
How to cope with workload: I was diagnosed with... - PMRGCAuk
How to cope with workload
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Quintius
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PMRproAmbassador
I also worked freelance from home even before the PMR was diagnosed. I found the ability to work any hours I chose made it possible and I too occasionally had ridiculous deadlines to meet - usually because the client had been dilatory and I was expected to make up the lost time!
What do you perceive to be the problem - physical or mental? Why do you think more pred might help? I confess I probably would have done something similar but was far more likely to ditch any other tasks first.
Oh - and do please tell us what was atypical about your PMR? Just wondering. We find that it is a rather over-used term and includes what we think is pretty typical!!!!
The problem, I guess, is both physical and mental (mental meaning: afraid I can't cope with the extra pressure). But sticking to the physical aspect, the reason for my worries is, that I have had more "tired/exhausted days" the last month and felt that I have reached some kind of limit. Taking this assigment makes me afraid I will cross that limit. My hope was/is that raising the dose a bit will give me a little extra energy. That is all I am asking for: a little extra energy :-).
Regarding my socalled atypical PMR: I never had problems rasing my arms, stiff neck etc., but I did have great pain in my thighs when I got ill. However - to my understanding - what was really atypical was my CRP count which was just under 400, when I was hospitalised. It took them a while - 2 weeks (4 weeks if you include my GP) - to figure out what was wrong with me. I started on 80 mg, which - as far as I understand - is a rather high starting dose for PMR.
I don't know if my run for the last 3 years has been atypical. My dose has gone up and down like many in this forum, in the spectrum from 5 mg (my all time low - and too low) to 20 mg. Anyway, atypical or not, I can relate to a lot of what is written in this forum.
I couldn't lift my arms - but I did have excruciating pain in my thighs when I went to start preparing for the winter ski season, 1 minute on the cross-trainer and I was in agony. I also had jaw claudication and scalp pain for a few months before it disappeared on its own, I didn't know what any of it meant at the time but in retrospect I suspect I had LVV rather than "just" PMR and my rheumy agrees. That would fit with the very high CRP and the difficulty keeping things under control.
I know the feeling - when you are self-employed you HAVE to take it on or they may never come back and with that level of stress - if it were me in the same boat I'd definitely try a bit more to see if it helps.
I did not see this comment until now, PMRPro. But you are spot with "or they may never come back". That is the essence of my worries. I have another 3-4 days until the assignment is on. If things have not improved I think I will up the dose.
Regarding the diagnosis: As far as I remember my papers say that the disease "is most compatible with PMR". A bit fluffy diagnosis with room for interpretation. Also room for LVV.
I did not know that LVV is more difficult to get under control. But that makes sense too. I have spend a lot of time trying to find a pattern. But without much succes.
There isn’t always a pattern.. well there is, but it’s your pattern not necessarily the same as anyone else’s. ..
I find it hard to find a pattern. 5-7 ok-days followed by 2-3 bad ones seem to be a pattern, but why? I cannot detect any cause. except when I have been physical active. That comes with a price
Well you may have answered yourself… if you are more physically active when feeling okay.. then very often that is followed by a few bad days..
Been there, done that - and only people who have worked freelance get it. Not to mention the lack of alternative income. I heard a GP tell a self-employed patient he was entitled to statutory sick pay if he was signed off as unable to work - not so. But you can apply for ESA I think. And that would be worth looking into because it is to compensate for limitations due to health problems that interfere with working as normal. They can only say no.
The meeting advertised on the forum a couple of weeks ago was discussing the spectrum of PMR/LVV/GCA - and the fact other medications are used to manage LVV suggests to me that is may be a mix of forms of vasculitis and it is likely to need more pred on its own to manage the inflammation. They have this fixation with PMR of getting people to low doses of pred - and that may not be the right thing to do,
I work from home as part of a family company. Quite a lot of my is on the phone though and I manage our tech staff that way and by email. . I have a phone by my bed so I can lie in bed and take calls if I have to. I stop and have a rest if I need.
DorsetLadyPMRGCAuk volunteer
Not sure I’m too happy about your quote -I have sort of managed.. not exactly positive.
Quite a few do work from home, so although I guess you are used to it, as PMRpro asks, what in particular are you worried about. The physical or the mental side of the assignment - or both.
An increase in Pred may help the physical side, but, as also suggested is there anything else you can sideline to enable you to cope without increasing dose.
Some replying will probably say yes increase, and if it were for only for a few days I might agree - as we do for other stressful occasions sometimes… but for something lasting 3 weeks, that’s a bit different. As we also say, once you’ve gone down that route the first time, it’s all too easy to repeat the next time another stressful occasion occurs.
If you are thinking there may be an issue, I do wonder if you are actually on enough Pred full stop.
Others who are still working will be along shortly.
PS - just seen your reply to PMRpro re fatigue - that’s likely to be adrenals as much as anything - and whilst the extra Pred will give bit of extra energy- you will have to drop down again afterwards… and that can be just as painful.
80mg is very high for PMR.. I started on that for GCA with sight loss… and with your upping and downing of doses, you have had a very turbulent time… and yes treatment certainly atypical, and certainly not very helpful for you personally.
No, "sort of managed" is not super positive. I have a hard time making ends meet financially and retiring is not a option. Neither is getting a permanent pension. It takes years and is pure Kafka. Finally, I have an issue accepting that I am ill.
I have been on 7.5 for 3 months. The first 2 were fine. Actually the best I have had for a year or so. The last month has not been so fantastic. Could that still be the adrenals? Or just the mysterious ways of the disease?
This is a tricky dose level because often the adrenal suppression you have had now shows itself. The Pred dose becomes insufficient to give you all the cortisol you need to get through a day let alone undergo stress. If your adrenal axis hasn’t cranked into gear and it often hasn’t yet you really feel it. Fatigue and uselessness become more likely and can either be a background annoyance or debilitating. The only way to get things working is by having insufficient cortisone/cortisol to challenge the body to react accordingly. Unfortunately it can play havoc if you have a busy life. Popping up the dose just delays the inevitable need to go through the rough patch of retraining your adrenal axis. There’s no easy way. I felt my worst around 7.5mg but sticking with it and reducing very slowly my adrenal glands started to get the message by 5mg.
Perhaps pop up the dose now you are committed to this assignment but you may need a hard think about the next 6 months to a year IF you are one of those who really feel it. As DL says it can become all too easy to up the dose to feel better. All this applies only if your PMR is under control.
Difficult to say -may be a combination of both. Even though the 7.5mg felt good for a couple of months - it might have been just on the borderline-and allowed a little bit of inflammation to build up each day. By the time you got to the 3rd month it had built up enough to cause you problems.
Plus of course, you are also at the dose where adrenals need to start working , so you have 2 things going on at once.
I appreciate you have to continue to work, so you have to make that a bit easier for yourself.
I think I’d be inclined to up your dose to 9 or 10mg and stay there for 2 or 3 months to really sort things out. It might disrupt adrenals temporarily ( but needs must).
Once you are back on track reduce really slowly 0.5mg a time (plain white 1mg can be cut) maybe using one of the slow tapers we recommend. That will help your PMR and adrenals.
Couple here - whichever one you like the look of -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Good luck
Thank you, DL and SnazzyD, for your quick, constructive and knowledgable comments. I will reflect a bit on things and decide whether to up the dose or not. Maybe I can pull it through on 7.5. Anyhow, I feel a little less panicky having "discussed" my situation in this forum.
We act as a sounding board as much as anything else… and when thinking things over by yourself you very often end up going round and round …the fact that others are listening helps in itself.
Hi Quintius. I can’t add anything to what these lovely people have already suggested, but I just wanted to endorse your comments about posting on here and feeling better by just “chatting”. It’s like a huge weight off the mind, isn’t it?
There’s always someone on here ready to offer advice.
Good luck with your assignment! I work from home from time-to-time transcribing interviews and totally appreciate the deadlines we have to deal with. Keeps the brain ticking - I think 🤣
Possibly that the 7.5 is only JUST too low and a similar situation has arisen as we see with people who actually got to zero only for symptoms to reappear a few months down the line. If you had proceeded to 7mg it might have shown more definitely and sooner.
People who work typically need a bit more pred than those who don't - and when you are the sole penny earner and not entitled to any benefits it is hard, very hard.
That would make sense. But what I do not understand is, why I have felt better on 7.5 than I did on 10 and 12.5. Not a lot better. But a little.
Many people react to pred in some way, it is a powerful drug and 7,5mg is quite a bit less. Have you been reducing 2,5mg at a time or does it just sound like that? And it is spring - winter is rarely a good time with PMR.
No, I have reduced 1.25 from 10 mg. The next step from 7.5 and down was meant to 0.625. All due to the size of the pills
Haven't you been given 1mg tablets? You really need that below 10mg.
Are1mg or 2.5mg available in Denmark? You cannot manage with 5mg once you get below 10mg.
You may have been subject to side effects at higher doses, which have now gone as you’ve reduced … it isn’t always one or the other. And feeling better covers a lot of things, not just your PMR or your GCA, but your whole system.
2.5 is available. At four times the price of 5 mg :-). But OK.
Good point about the potential side effects at a higher dose. I feel that is one of the challenges; to distinguish between side the disease and the side effects of prednisone.
2.5mg is more expensive in UK as well.. less manufactured.
Hello, I am a freelance and work from home and really appreciate your problem. It has been hell trying to keep work going but I have...I have only lost the odd day in the 4 plus years I have had PMR. I sometimes have deadlines every few days...sometimes more, sometimes less!
Far from ideal but I have no choice...I managed to continue even when hospitalised for a mild heart attack!
I find that what works for me is working very intensively in short (3 -hour) bursts...sleeping and then working again....when a load of work is about to descend, I make a LARGE pot of a very nourishing lentil, bean and vegetable stew to last a few days and boil some eggs, stock up on yogurts etc. All my food is delivered and I do nothing but work and sleep in bursts. I still sleep from midnight to 6 every night and eat at regular times (I don't eat breakfast but drink black coffee)
Sometimes i find a get a few extra hours done from 7pm to 10pm.
I just grab hours whenever I can.
I have never increased the pred, despite severe fatigue from 5mg down.
I never take a complete day off...if I can get a few hours done every day, it takes the pressure off the other days,
I am not recommending what I do...it happens to be the way I survive.
But if a little extra pred would help over those 3 weeks ...go for it.
wishing you every success with this project.
Thank you for giving a resume of your coping strategy. It is extremely helpful to learn how other people arrange themselves. Not that I have to or can do excactly what they do, but it is inspirational. Apart from that it is just good to know that it is possible to get by. Interesting, that you never increased you dose despite fatique and still got by.
I have LVV am also freelance and have been for 35 years but I have had to virtually stop as my work was travelling and then long hours. Everyone has made some really good suggestions and the only thing I would add is try not to do the interview days back to back if you can so you have a rest day in between and if you need to do more than one a day space those out too so you can regroup between them. If I rest and pace my activities I can achieve a lot more than if I try to cram it all in at the same time. Good luck. I don't think we appreciate how being self employed can affect us internally. We don't have the luxury of a guaranteed income, sick days and holiday pay. It can all add up to stress even if you are not aware as it becomes our norm.
Thank you for the back-to-back-day advice. It makes sense and I will try to follow it. I agree with your comments on being self employed and it no doubt adds to the stress.
I’m in a similar position Quintius with atypical diagnosis (under 50 and normal bloods) and trying to work through it. Most of my first year has been on high doses and that was as debilitating as the PMR so like you I felt the best on 7mg, If this is a defined period of work then I would not increase my dose but take extra care to pace myself and increase stress busting activities. I find working in bursts helpful too. Whilst there is a risk you may end up increasing to higher dose later, increasing the dose to deal with work stress will do you no good longer term. I’ve just had my first experience of adrenal insufficiency at 6mg and it honestly does not feel possible to continue working even though I am self employed. There is no financial help however and the stress of loosing the house etc. will be an even more horrendous. Take care and hope it works out OK
Thank you for the comment. I have tended to work in bursts too. 2-4 days work and then flat on my back for 2-3 days. I can relate to the stress of loosing house etc. You too take care. I hope the adrenal insufficiency will get better.
I've only come off pred a month ago and worked full time throughout the 8 years since I was blessed with PMR. I found during very busy times that full rest when not working was absolute for me - only the necessities or I'd start having issues. I had numerous times when the dose seemed to handle me well but then some stressful days would come along and I'd feel some niggling issues starting to show up so I'd up my dose a bit. Unfortunately most of the stress was family related in spite of them knowing how it affected my condition. They seemed more than happy to pile it on. I could understand the same being said for the stress related to your work. It's so easy to over do it. "I've always been able to" was my worst enemy over the 8 years.
Thank you for sharing your experience. Interesting to know that you have gotten of pred even though you upped your dose periodically. I don't know if I will do the same. But I am glad you took time to write it. And yes: "I have always been able to" is real troublemaker.
Hi Quintius, this is a long shot and really only might be useful for your future presssureful assignments that might crop up, certainly not this one.
I am suggesting giving Methotrexate a try if you havn't already. 18 months after diagnosis, my rheumy prescribed MTX 10mg (the so-called steroid sparer) weekly and much of my extreme fatigue and brain fog lifted very quickly. This is not the answer for everyone but it does help some of us to have more energy and focus. 3 years in, I slowly reduced pred to zero. Now facing different challenges with widespread osteoarthritis, tendonitis, etc, and possible return of the PMR?, but that's a different story, but for a period of time, I felt almost normal. I'd certainly only try it when you have very reduced pressure, as some people experience ill-effects. Just a thought for the future. No need to reply. You have enough to focus on. Wishing you all the best.
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