From November until late January I experienced a pleasant relapse into feeling almost well. I was still tired, but less so and had lost that permanent flu sensation. I had far more energy and far less brain fog, more interest in activities and even started some fitness classes. Then suddenly, and I mean very suddenly like a hammer blow, I woke up feeling terrible again. Yesterday was a write-off as I could barely keep my eyes open. It's not so bad today but I think I'll have to spend the rest of the afternoon on the sofa. My question is how do I explain this to family and friends? I was so pleased to be able to tell them I was definitely on the mend and they were delighted to hear it. Of course, I don't look any different so no clues there... But then I didn't actually look that different before November... I know people on this forum understand the ups and downs of these conditions, but to others I suspect they just don't seem real. I live alone so don't have somebody in a position to monitor my condition from day to day. I can never decide whether that's an advantage or a drawback.
How to explain that the DF is back...: From... - PMRGCAuk
How to explain that the DF is back...
I think it can be an advantage, Marijo; at least when it hits, (usually at about 2.30, in my case), you can take yourself off for a snooze, with nobody to question it and you don’t feel you have to cook, clean or do anything you don’t feel up to. I do find I have to give in to it, or I’ll feel dreadful, either later or the following day.
Be very impressed that I am actually awake and it’s 2.44!
Let’s hope the spring days will ease things a bit. Onward and upward, or possibly, sideways!
I agree on the whole. It's good to be completely independent and, as you say, to be able to do exactly what I feel like doing. However, sometimes I think it would be good to have a nice person to take care of me and give me little treats...
That sums up my cat perfectly!!
Oh lovely. Cats have the best attitude about so many things...
My cat is good company, we doze together, but he doesn't bring me any treats and expect me to feed him 😋
Hi Marijo, it seems to me you are dealing with a flare. I see no point in telling anyone that cares to ask otherwise. I do hope it is a really short lived one. Take care for this period.
Thank you. I just think I should have been less delighted to be feeling well, and should have reminded everybody that a flare was possible or even likely. I probably wanted to forget that myself!
I'd say a flare too - and the others need to know that happens too, even when you appear to be on the improving pathway. I'm having a lovely flare - pain and stiffness are fine, the fatigue not so much. Could cheerfully just sleep!
I must say that so far the pred has dealt remarkably well with my pain and stiffness. They disappeared and, apart from an occasional twinge, haven't returned. My problem is always the deathly fatigue together with the flu sensation.
Hi,
Just as a matter of interest what dose are you on now? And have you reduced recently I.e. within last week or so?
I'm on 10 mgs per day - have been since October when I last saw my rheumy. I'm seeing her again next week, so expect to start the reduction into single figures. So I can't link this flare (I agree that's what it is) to a change in dosage.
Hi again -
And you’re a bit high for it to be Adrenals as well. Perhaps it’s just a combination of winter, maybe doing too much over Christmas etc - sometimes we just don’t know. Very frustrating.
But when you do reduce get Rheumy to agree to 0.5mg tapers monthly and maybe using a slow plan like mine - others are available - healthunlocked.com/pmrgcauk...
Take care.
Yes, I'm prepared for the discussion. I must say that, unlike some others that I've seen mentioned on the forum, she isn't over-eager to reduce very quickly, so maybe I won't have too much of a problem.
I think 10mg can be the beginning for a few people - the ones who absorb only about 50% of their oral dose. Some people may be fine on 5mg real dose - but not all.
Having tried three times to get below 10 and having it backfire, I can soooooo relate to this 🤣
I'm in the same situation of not being able to get below 10. However, I'm in a flare at the moment and back to 15. I'll be happy to see 10 again, but have no idea when that will be.
I've suspected for a long time that my issue may be that of absorption of prednisone being more like 50%. It's hard to get any doctor to accept that possibility though.
I'm lucky, my GP reminds me of all the unknown variables, pred absorption, strengths of PMR, prior medical issues, age, fitness before he tells me in his strongest tone (which is still soft but I have to take notice as it's his version of shouting) stop comparing yourself to anyone else. But then it's universally acknowledged I'm a slow learner 🤣
I've got the struggle to get below 10 to come. At least I'm aware of the possible pitfalls from reading this invaluable forum.
I'm the same,just laying and sitting around....so tired....OH just gone to my son's till this evening, he dose'nt put any pressure on me and does most things....I mainly just do food.....but he doesn't get it sometimes, what he doesn't understand is that I should "earn" the tiredness....I wish!..........baffles me sometimes I must admit......hope it doesn't last to long.........for any of us!
I know - where on earth does it come from? I sometimes feel as if I've just done a 12-hour shift as a lumberjack and that can be at 8 in the morning.
Absolutely.....I`m sure I must have run a marathon last night while asleep!....sometimes I wouldn`t mind if I had overstepped the mark to warrant it.....so tough...….nice to talk to others that know exactly how we feel.....
I agree. It's one of the most valuable things about this forum... when I was first diagnosed, I'd never heard of GCA or PMR, so was very relieved to find this space where I can 'meet' people with the same conditions.
Amen to that! I agree with every word you've written. Ffffatigue!
Hi Marigo
I read your post while l was at the hospital, were you extra busy over the weekend or possibly forgot a dose of Pred? Just a couple of thoughts 💭 while l was waiting for my appointment!
Rest as much as you can & hopefully you’ll pick up quickly.
MrsN 💐
Thank you Mrs Nails. I was extra lazy, if anything, over the weekend and I'm pretty sure I haven't missed a dose. I think it's just the cussedness of these wretched ailments.
Always worth a thought, as l did miss a dose & it wasn’t until 4pm l started going downhill.
Take Care 💐
I missed a dose a few weeks ago and realised when I was out and hadn't got an emergency supply with me. I've been extremely careful since then.
"The cussedness of these wretched ailments "!
You have coined the perfect phrase for PMR/GCA.
We are driven to look for rational explanations and there don't seem to be any that allow us to predict what tomorrow will bring.
These disorders are capricious and unpredictable in presentation, sometimes from day to day I will have a different set of ails.
The dreaded/deadly fatigue is probably one of the hardest for a formerly well-functioning woman to accept.
Hardest lesson....learning to accept ....... stop...accept.
Sucks don't it😝
Kindly, Jerri
Yes, I know. I wish now that it hadn't let me have a nearly 3-month interlude of relative good health. I'm now back to the 'one day at a time' situation, 'capricious and unpredictable' as you say.
I’d be grateful for that respite though Marijo1951. 3 months of being normal is more than I have ever managed.
Me too,SJ. 😪
I know. I'm not really complaining. Just wish I hadn't become over-optimistic.
Have you been doing too much and it's just caught up with you. I see you said you'd started fitness classes. Maybe that was a step too far?
I suspect that might be true, although I picked the gentlest ones specifically aimed at over 60s. I haven't been able to go for the last couple of weeks. I might try again on Friday.
Thought I was doing well to have pushed the vacuum cleaner around in a desultory way this morning but total collapse onto sofa for the rest of the day - exhausted doesn't even cover it. It's not helped by the fact that I was advised by GP yesterday to cut out caffeine entirely (I have arrhythmia ) so I've no artificial prop to lean on. I feel I could go to bed now and it's only 6.15pm. I suppose there are advantages to living alone, though it would be nice to have the occasional meal cooked and cup of something decaffeinated brought to me in bed. Still, on the positive side my daughter is coming down and will take me shopping on Friday and, huge bonus, my grandson will be with her as it's half term. Just hope I can stay awake for the whole day!😴
Enjoy your day with your daughter & grandson, rest tomorrow in preparation 🌸
Thank you. I'll try to rest in the morning but have my Book Group in the afternoon but that's usually stimulating and in very good company.
Beware if you cut out all caffeine immediately! Expect a killer headache. Wean yourself off it is my advise. (Been there, done that, ooh that was a headache!)
I have been drinking decaff coffee which I understand still has traces of caffeine . When I've been on that for a few weeks I'll try no coffee of any sort. I did experience the headache, which was awful, a few years ago when I tried to give up. But - touch wood - I haven't had it yet this time.
Sorry to hear about the advice re caffeine. I haven't drunk coffee for more than 10 years because of acid reflux, but I drink several pots of tea every day and would hate to be told to give it up. My eldest daughter just visited and we had a lovely couple of hours together, but I had to suppress a few yawns while she was here as I could easily have just nodded off. Have a great time with your daughter and grandson.
Thank you. I'm sure it will do me good.
I'm sure it will. I've said it before and I'll say it again "grandchildren are the best medicine"
I understand your frustration completely - I had also been feeling much better - almost 'normal' some days then the DF came back with a vengeance as well as some other renewed PMR/GCA symptoms. I had been on 12mg and stable for about 10 weeks so thought - 'fine' I'll try a 0.5mg taper - but after just a few days I felt really awful. I couldn't credit such a small reduction could do that - but am inclined to think it may also have coincided with an increase in the disease activity - which we kind of call 'flares'. It is my 2nd 'big' one in the now over 2 years since my diagnosis. I particularly 'resent' the fatigue - so frustrating I sometimes feel I need matchsticks to keep my eyes open and yes that flu-like feeling - uggh !!
Anyway hope you feel lots better soon - but as for caffeine - well I just couldn't live without it - even if it eventually 'KILLS' me (LOL) X
I went out on the bus today with a friend. We had a gentle walk in Golders Hill Park, a lovely park in north London and a cup of tea in the Old Bull and Bush. It was so therapeutic to be out in the sun in February. I think this flare or relapse or whatever, although unwelcome and nasty at first, is nowhere near as bad as it was a year ago. However I'll probably be advised by my rheumy next week to start tapering down from 10 mg. I know this might be the start of a difficult period from the many accounts I've read on this forum. I'm trusting that she will be amenable to a very slow gradual reduction.
The walk sounded lovely I visited that area when last in the UK. Don't let your Rheumy (if you can) taper you back down too quickly - 10 isn't THAT high a dose - you really need to be sure the flare is under control for a wee while or you could just end up going up again - and as PMRpro has often said : 'slowly, slowly catchee monkey !'
I know, but I've been on 10 mg for 4 months and from what I've read here, that's fairly unusual. I think she will start talking about going to single figures.
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