I was quickly "diagnosed" with PMR 7 mths ago, still waiting for a 2nd opinion. Made it down to 2.5 mg of prednisone and then wham pain just like 6 mths earlier. Dr. upped meds to 4 mg still pain, now I am at 10 mg and I am exhausted. I continue to teach 4 days per week but find by my final evening and day off I am so tired, I am also tired every evening after school. Why am I so tired?????
Why so tired???: I was quickly "diagnosed" with PMR... - PMRGCAuk
Why so tired???
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Musiclady18
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DorsetLadyPMRGCAuk volunteer
Hi, and welcome,
Why are you waiting for second opinion?
If you reached 2.5mg in 7 months then no wonder your pains returned.
PMR is long term illness - years not months - and you need to take the correct amount of Pred to control it - you’ve obviously gone well below the level you actually need. Plus you need to realise the Pred is only addressing the inflammation caused by your illness, not the illness per se - so you need to amend your lifestyle to accommodate the illness.
Unfortunately both the PMR and Pred can cause fatigue.
Have a read of attached, it may help you understand your illness a little better -
Hi Music lady. I am afraid deathly fatigue is par for the course of this journey. It can't have been helped by your super fast attempt to taper, so it is unsurprising you are experiencing a flare. Unfortunately there also seems to be no rhyme nor reason for when fatigue happens nor how long it will last. Therefore the temptation is to pack as much activity into our 'better' days. Fruitless really as learning to rest is soooooo important so that we don't over do it on the good days and suffer afterwards as a result.
Teaching is extremely tiring anyway, especially at this time of year with reporting to parents and additional summer activities. I was in teaching for 37 years and a Headteacher for sixteen of those. Fortunately PMR hit me after I had retired, though I still work in music education. My role is though part time and my timetable is flexible. I can't imagine working with the children consistently for four days a week whilst managing PMR as well. Teaching consumes soooo much energy! Hats off to you for even attempting it!
I was quickly diagnosed with PMR from Emergency room visit and Rheumatologist said that's what it is...........from blood test done from them and following same route, monthly blood work. He is also the one who had me tapering down. I was at 30 mg. down to 20 then 10 he said toooo fast, so slow down do 10 for one month then taper 2 mg per month......all the way down to 2.5 then pain set in that was from December 2018 to March 2019. I am following specialist instructions re: taper.
Unfortunately your specialist, like so many, doesn't seem to understand that PMR is what sets the timetable, not you, and certainly not him/her. My doctor, fortunately, told me right at the beginning that at some point I would have a lot to say about how to taper. She started me off with her recommendations, including instructions to stop tapering if things worsened, and the moment I felt pain starting to return (9 mg) I stopped the taper and after a couple or three weeks back at 10 when the pain had mostly gone again I started one of the slow taper methods developed by patients. (Ever since then I've had what I call niggles, but nothing like pre-treatment, and I try not to let them build up.) So in seven months of treatment I went from a start of 15 mg to about 7 mg, which is also considered a bit fast. Nothing like your taper. By the time you got to 10, assuming your symptoms were still well controlled, you would have done better to taper by no more than 1 mg per month or six weeks. A standard rule of thumb is to reduce by 10%. So when you get lower than 10 the slow taper methods become very important.
Tapering also depends on each individual. I can't taper more than 1/2 mg at a time with the slow method. My doctor doesn't believe me when I tell him that but it is what is. I've had PMR for 3 years and I agree with everyone, it takes time for this disorder to slow down.
For a few tapers I was able to reduce by 1 mg per month by tweaking the dead slow nearly stop method. I would drop by .5 mg and, if all went well, in the middle I would drop by a further .5 mg. At this point, probably from something like 7 mg, I wasn't ever reducing a daily dose by more than .5 mg. This got me successfully down a few steps and then it was .5 mg per month or, more usually, six weeks. Eventually I coasted to a bit of a standstill, apparently my lowest possible dose, for the last couple of years. Last week once again, after several weeks of 2 mg, and a week or more of feeling okay, when I tried 1.5 again, just for one day mind you, I have felt it. Every time I try this I think maybe this is the time I'll be able to get back to 1.5 where I once was for a few weeks, but, no. Not yet.
Thank you for that info HeronNS. I would be so lost without this forum. I've had PMR for 3 years now and I'm reducing slowly from 4.5 mg to 4 mg. Last week my blood work came back perfect even though I still have minor aches and pains. So, because my blood work looks fine my doctor wants me to reduce even faster. He thinks I shouldn't have aches and pains, nor withdrawal symptoms at such a low dose. On top of everything, he thinks that if I'm having a hard time reducing the Pred, I should take Methotraxate. I refuse to add another medication with such horrible side effects. I find that doctors have a "one size fits all" mentality and have no creativity in treating us as individuals.
I think it's been said by many on this forum,including our gurus, by the time you're down to levels like 4 or 5 there's no point adding another medication which potentially has side effects as bad as or even worse than prednisone at higher doses. But it is tiresome having to deal with doctors who think otherwise. Oftentimes, as I think is true in my case, we have a hard time tapering further for the simple reason we actually need the dose we're on. It's really only if one is stuck at a higher dose the whole thing needs to be reconsidered, including the diagnosis.
He's a twit - below 5mg he should be rejoicing with you. Every 1/2mg now is a bonus - but you are well in the physiological range, the amount of corticosteroid your body requires to function anyway, it is fulfilling 2 functions. mtx doesn't replace the pred, it potentiates it and the difference in the long term between 3 and 4mg is minimal.
Oh PMRpro you really do me good!! Sitting here on 2mg a day with aching fingers and joints wondering, pathetically, what to do but knowing full well I should increase preds until I don't ache. And then I read your He's a twit comment. Wonderful! Thank you.
I was so excited to have come this far and I was very disappointed at his reaction during my last appointment. You're right, he should be rejoicing but he didn't and it depressed me for a few seconds. I didn't let allow him to bring me down because at the back of my head I could hear you ladies saying exactly what you just said. Thank you!
As HeronNS says your new regime for tapering is also too quick. One month at 10mg is okay, but after that it should be 1mg every month (or better 1mg every two months).
I’m afraid your specialist instructions are likely to continue to cause you problems.
So I guess stay on 10 mg for 1 mths not just 2 mags as I was instructed?
To think I was an very active 61 yr old had my flu vaccine and that’s what started this whole mess??
The mess can start from anywhere and as the people have said above , especially Heron who seems to have had a sensible specialist , the PMR book for doctors says to taper in a certain way but when it gets to a certain point patients need to start telling the specialists what they require.
You were tapered too quickly , most importantly because your taper wasn't taking into consideration the physically and mentally active job you are still doing.
It is not surprising you are suffering extreme Tiredness and Fatigue.
As patients we usually advise that people have time to recover and balance between tapers but also activities.
I wouldn't be surprised that as well as working four days in a row a week you are also trying to do your household chores and keep up activities with family as well.
We've all tried it and all hit the burn and the flares then needed to keep upping the doseage as pain comes in thick and fast.
I would say if you are on 10 mg and feel your pain and stiffness symptoms are manageable after a couple of weeks , stay there for a month more while you adapt what you can do in daily life to reduce the Fatigue and Tiredness that is bringing on Pain flares.
If you cannot be flexible with your timetable , you need to get as much rest and relaxation at home after work . Get someone else doing the cooking and household chores because after four days work all you will have energy for is the odd bit of quality time with family or friends ( but quality time when you enjoy the fun but don't do the preparation and organisation) and the need to just flop down and sleep.
At work , you may help reduce the effect on your symptoms by maybe having a timetable change and splitting your work to two days on , one off .
If that's not possible ( and even if it is ) you need to be honest with work colleagues and teach them about PMR.
You need to do timetable obligations only and at least until your PMR is well controlled step out of any extra curricular activities ( even if they are your favourite bits!)
Most teachers spend most of their time standing these days , but with PMR , taking a few minutes each 20 minutes to sit by your desk for a physical rest will help alot.
You can explain things to students too , and start going " old school" and get the kids to come and sit with you for one to ones during class instead of you standing with them bending over the desk.
Keep a bottle of water with you and explain you need to drink regularly through the day , dehydration is a big trigger for your inflammation , and although you may not feel thirsty you can be on the inside.
Finally , get out of the habit if you have it ( like my OH) of running around and doing jobs in breaks and at lunchtime. If you want to work and not have PMR punish you for it , you need to use those breaks as what they were designed for , Breaks!
Relaxing , sitting , eating food without rushing it over a book , taking chance to rotate and soothe the joints , even using a fine mist water spray or cool packs to cool things down , all this restful balance will help reduce your Fatigue so a taper and recovery can begin again.
I know , I can see you at home reading this saying "good in theory but that's not possible in my life " , but we have all said things like that and then when we were forced to discovered it is possible with a little help from our friends and colleagues , it's usually us that find it harder to let go and adapt.
I hope this doesn't sound too Mumsy , but honesty up front helps , and I hope you find a way to make things work for you. Just add some rest spots in it.
Take care xx
Great insight and well informed advice Bleary eyed. Were / are you in teaching?
Ideally - or maybe a little longer - it depends in how YOU feel. No point in reducing if your symptoms are not controlled and you feel completely washed out.
The specialist has given you a taper Plan, but according to the guidelines it should be tailored to meet the patients needs. They sometimes forget that bit!
If you are working full time, like you are and in a stressful job then probably you are going to have to reduce considerably slower (unless you are very lucky) than someone who can rest during the day if they need to.
If the 10 mg is what you need to control the symptoms, yes, a month would be a good idea. Then try one of the slow taper plans. Either Dead Slow Nearly Stop or DorsetLady's Simple Taper are available on this site.
in reply to Musiclady18
At this rate you will be bouncing up and down in your pred dose feeling rubbish following your specialist instruction. I followed my drs instruction and ended up worse than at diagnosis and had to be put back up to 15mg start dose 6 to 8 months in. It's taken 3 years to get to 6mg following the rheumatologist advice. Mine seems to follow the guidelines treating pmr and tapering pred based on symptoms not blood markers alone. I still have wiggle room agreed with Rheumy for moving the dose if so required.
The majority of people with pmr should expect at least 2yrs before remission occurs. Fast tapers are a predictor of relapse. I am 3years in at 6mg and accept PMR will burn out when it burns out. Until then I am happy to take pred, especially at 6mg. But I was happy at 10 and 15mg when that was the dose I needed.
You have a lot on your plate working etc. Don't burn yourself out trying to follow unrealistic reduction plans. Good luck🌻
Musiclady, you're tired because you're sick. I understand that you may not be able to just stop working, as I can't, but get some rest every night after school, and make sure you get deep rest over the weekend.
Also, you probably need to be on a higher dose of pred. Although your PMR abated somewhat, it seems like it's not quite done with you yet. Too much activity + not enough pred = relapse + flare.
Get your doctor to take you back up to at leas t10mg, then sit there until your inflammation is mopped up. Once the pain has settled down, don't let anyone force you to reduce by more that 10% a month. Once I got to 10, I would only reduce by 0.5mg. No pain, no flares.
I'm not a doctor, only saying what my own experience tells me. But you're still sick, and need to take rest and medication to achieve a recovery. Otherwise, you're just going to bounce around up and down, and wind up being sicker for longer, and taking more pred than you would have otherwise.
Just because you are taking pred does not mean you are cured, all it is doing is managing the pain as long as you take enough of it and are careful in tapering. You have an illness which causes fatigue whether you take pred or not. It is important to look after yourself and appreciate that life for the time being is not the same as before you became ill.
It took me 3 years and 7 months to taper down to 1mg every 7 days when I, (not doctors or rheumatologists) decided to stop taking pred. Two and a half years on I don't feel anywhere as active as I did before I was diagnosed with PMR. It's a condition which leaves its mark
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Because the pred does nothing for the actual underlying disorder that causes the syptoms we call PMR. It is an autoimune disorder that makes your immune system unable to recognise your body as self so it attacks the tissues, leading to damage and inflammation and to all intents and purposes has a similar effect on the body to flu. Would you be surprised if you felt like this if you had flu and continued to work?
As has been said - even reducing from 15 to 2.5mg in a few months was just cruising for a bruising and once you flare badly it is often far more difficult to get things under control again - and even more so if you expect your body to function normally in the meantime. Rest and pacing are absolutely essential factors in the management of PMR, pred just calms the pain. It has been established that reducing at more than 1mg per month is predictive of a flare - so 2mg is far too much, never more than 10% at a time is better. And anyway you are not reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did - it might be 10mg at this stage or it may be 1mg, everyone is different. Too big steps makes it very easy to overshoot, develop a flare and have to go back months.
When I first started pred after being undiagnosed for over 5 years I was almost pain-free in under 6 hours and could move normally. I was told to reduce at 2 weeks each of 15/10/5mg and stop - within 6 hours of missing the first 5mg tablet I was worse than before pred, in bed in tears. It took me over 4 years to get below 10mg again, 6 years to get to 5mg and that didn't last for long. Currently I am back at 15mg and still struggling a bit although I do have some other complications which aren't helping.
healthunlocked.com/pmrgcauk......
You have to learn to work around PMR - especially if you need to continue to work. Many of the members of the community have had to make sea changes in their lives - including early retirement on health grounds. Many arrive thinking they will buck the trend - few do I'm afraid.
It may feel as if it was the flu shot that "did it" but that was probably just the final straw in a lifetime of insults to the immune system. It could just as well have been the flu it was designed to reduce the risk of having. Many of us were relatively young and fit - and probably all of us had unrealistic expectations of what our bodies could cope with. I was 51 and at the gym several times a week - and developed PMR with no apparent final trigger immediately before. I'm one of the people for whom it crept up over months though I have also had the overnight strikes in the form of flares. But you aren't alone - and you will learn how to manage it better, Providing you ditch your doctor's approach to reduction! It is adding to your problems.
One top PMR expert and his group developed a taper where the patients stayed at 10mg for a year before continuing the reduction at 1mg per month. They found it reduced the flare rate from 3 in 5 to 1 in 5 patients And I'm pretty sure it was because patients were at a dose that was plenty for everyone during what is probably the most volatile period of PMR, the first 18 months. I'm sure a lot of people would do a lot better in that first 2 years if the taper rate was slowed right down, not a breakneck effort to get off pred come hell or high water. That way leads to hell if you ask me ...
Hi Lady, others have said it all... my comments are simply acknowledging the situation in which you find yourself.
Here are some truths...
*You dont look ill, but you have acquired a chronic, life-changing illness.
*at this time, Prednisone is the only scientifically validated treatment for PMR.
*Prednisone is your friend...not your enemy.
*Fearful Side effects of Prednisone are highly touted , but recently debunked by actual research.
*Tapering off Prednisone is not your goal.
*Your goal is learning to live with the disease, while managing the inflammation to prevent further progression of PMR to possibility of GCA, and potential of permanent vision loss.
*Your doctors (most likely) know far less about this illness than the members of this forum know! Some of our members have actually been in the drivers seats of research development.
*you will learn to live with PMR, but you will need to accept there is no quick fix.
*PMR lasts as long as it lasts...my illness is into its 6th year, other's experiences have been longer, some have been shorter.
*patience and pacing will become your riends.
* teaching your family, co-workers and friends about PMR, will ease their expectations regarding changes you may need to make.
*You are going to be fine!
Kind regards, Jerri
PMR diagnosed 2013
Just a word of warning to anyone whose doctor has tapered them quickly off steroids because tests show no inflammation and yet you are still in great pain. My GP at the time wouldn't listen to me so eventually after writing a formal letter to him, and my adult children also writing and speaking to him he reffered me back to the rheumatogist who confirmed I had been misdiagnosed and needed treatment other than steroids.
Tests SHOULD show no inflammation if you are on the correct dose or above. It doesn't mean the PMR has gone away or that the diagnosis is necessarily incorrect.
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