Did anyone feel severe fatigue on 80 mg prednisone? DorsetLady? Anybody else?
Question for DorsetLady and others who were on 80... - PMRGCAuk
Question for DorsetLady and others who were on 80 mg prednisone
Written by
People1
To view profiles and participate in discussions please or .
Read more about...
53 Replies
•
I did, and then it got better, and now at 4 it has returned.
You seem very worried about several symptoms. If you find the search box ( top right on PC screen ) you can search these and it might help put your mind at rest until someone more qualified comes along to help you. You will then find that fatigue is common to all of us. At 20 mg, my max. I could barely function for it and a kind of inertia. Hope you get the answers you need very soon. Deep breath!
Yes as things come up I appreciate everyone’s input in regard to informing newbies very much but do not want to impose on anyone’s time. Thank you for that scats. Thank you for your suggestion about the search. That will prove to be very helpful.
Don't stop asking questions, a lot of reassurance is needed with something like this, but I found reading other peoples posts helped me understand what I was feeling.
I see at one point you say you are used to going 24/7 with presentations etc. I think you may find that this is a contributing factor. Many of us feel that stress has contributed a lot to our present condition. Few of us are able to work. Search 'spoon theory' for advice on how to pace yourself. I'm not too keen on the analagy myself but it's the accepted one and it does the job. Acceptance of your condition is the major first step and is not easy . Hope all goes well for you.
🌷🌸🌹
Thank you so much Daisychain12. I think you are absolutely right in every way. Slowing down is essential. Dorset Lady has convinced me of that, as well as you. Thank you.
Darling you are being so brave. I have been so impressed. I will write more ASAP xxxx
DorsetLadyPMRGCAuk volunteer
Hi,
For the first few weeks (me on 80mg for 2 weeks) I still had some jaw ache, headaches (not a severe as pre Pred, and partially due to trying to acclimatise to only using one eye) and tiredness - wouldn’t say severe fatigue.
You must remember that your body is trying to cope with 10 times the natural amount of cortisol it usually produces, so everything is out of kilter, and it does take time to settle....but it will.
Because of my situation I was having blood tests done about every 2 or 3 days at the hospital, and was closely monitored by the Eye Dept so although I felt strange in many ways I was not really worried about my symptoms per se - only the fact that I might lose sight in remaining eye.
You, however, seem to have been left without proper supervision or any advice on the way forward.
As you refer to Prednisone I assume you’re in US rather than U.K., and your GCA was diagnosed by Ophthalmologist (as was mine) so are you still under their supervision, if so then then have they supplied a tapering plan or advice?
I think you need to see a Rheumatologist ASAP.
Thank you for your response. Presently I am under the care of my opthamalogist who performed a second TAB yesterday. Due to all the classic signs of GCA, my neurologist originally sent me about two weeks ago straightaway to the opthamalogist who performed a TBA on the right temporal artery 6 days after I had started 60 mg of prednisone. When that came back negative both my opthamalogist and Neurologist insisted on biopsying the right side despite the fact I had been on prednisone for 12 days by then. I will have those results in a week. Due to continued blurriness in left eye, I was told by both doctors to go up to 80 mg. Tomorrow when I return for my follow up visit to the ophthalmologist post-biopsy surgery, I will inquire if I should stay at 80 mg until I see a rheumatologist, as I was able to secure an appointment with a rheumatologist on October 15. Previous to today no one could get me in till January here in Ohio in the States. So I am definitely not sitting around twiddling my thumbs on this ones and do have medical care, but neither the opthamalogist or neurologist are skilled in follow up GCA/PMR care. I certainly wish I could have got in sooner than Oct. 15 to see a rheumatologist, but at this point I was fortunate for that. Just feel uneasy staying at 80 mg for three more weeks. Strange thing for me is that even at 80 mg I am still having temple pressure as a major symptom, though horrendous three week headache, neck, nausea, and shoulder pain cleared up after 48 hours on 60 mg. Thus, I am wondering if the temple pressure isn’t a result of the steroids themselves. Meanwhile trying to keep up with my day job as Dean of Students for an online university. Fortunately I was able to cut back on meetings, as well as finishing up a PhD dissertation when the headaches began three or four weeks ago. If I could just get rid of the intense temple pressure this would be more manageable. Thank you DorsetLady. So that is my latest update. I will consult with opthamalogist tomorrow regarding 80 mg dosage, but I must say after two days at 80 mg the blurriness appears better. Just wanted to clarify so you knew medical care has been forthcoming but just not immediate in regard to seeing a rheumatologist and not sure what to do in the interim. Perhaps tomorrow’s post-op visit will shed more light. Thank you again!
Hi,
I wasn’t implying that you were sitting around twiddling your thumbs, far from it! My concern was that you hadn’t been given a clear indication of where you go until you see Rheumatologist. Glad to hear you now have an appointment, albeit a month away, and obviously you don’t really want to be at 80mg until then.
Whatever the result of the second TAB - which may well come back as negative which it very often does - you obviously have GCA.
The TAB can be very misleading - very often the sample taken doesn’t show positive because either there aren’t any cells in that particular piece of artery, or if there were initially they have been reduced by the Pred. Which is why we always say - SYMPTOMS ARE THE KEY.
The temple pressure could be the Pred, but you are also working which really you shouldn’t be so early in your treatment - that’s not helping.
Definitely slowing down mainly because I can barely move. One meeting today sitting down at my desk (talking to people for two hours was awful, could barely move my jaws. I present in major universities all over the world and have never had issues with jaw fatigue when talking)in addition to trying to do some laundry and feeding the dogs pretty much did me in. Just can’t do it. Seriously Dorset Lady, it’s like I just bottomed our For someone who goes 24/7 nonstop all over the world this is shocking to my family and colleagues, not to mention me. Did you find yourself flat on the couch for a period of weeks to months? Also I do admire your bravery and courage you reflect in your demeanor, not to mention your presence of mind in advising. The Wisdom traditions seem to find a way in and through you. Please do let me know the protocol you followed personally in terms of rest and downtime in your treatment, from soup to nuts, as we say in the States. I know I need taming and counsel in this regard. What did your early days look like in terms of what you d to rest? Thank you so much.
*Bottomed out. Word finder giving me fits
Hi again,
Your days sound like mine did pre-diagnosis, pre-Pred which makes me concerned that although you are on 80mg it doesn’t seem to have worked as it should, or as we would expect.
There are 3 main reasons for that -
You are not getting the full benefit of the dose - most people should achieve at least 70% relief (doesn’t sound as if you are);
You are not on a high enough dose to control the accumulated inflammation (80mg certainly should be enough, but not always); or
You are trying to carry on life as normal when you cannot (from what you’ve written, that seems the most likely)
Somehow, no matter how difficult, you need to stop working for at least a few weeks to enable you to get your illness under some sort of control. I appreciate you have a high powered and important position, but you can’t do it at the moment. End of!
To quote from Royal College of Physicians “GCA is a critically ischaemic disease, the most common form of vasculitis and should be treated as a medical emergency “ . You, nor your work colleagues would expect you to work immediately after a heart attack or any other major trauma - you need time to recover.
You may be on a high dose of Pred but it is doing nothing for the GCA, all it is doing is controlling the inflammation caused by the underlying illness. GCA itself, and the Pred cause fatigue which is why we witter on about learning to pace yourself! If you don’t you will be fatigued permanently.
As I said in another reply once I was on 80mg I did still feel tired (but not overwhelming fatigue like before), still had head and jaw pains, but I think I was so worried about losing the sight in my remaining eye that really everything else was secondary. Plus I wasn’t working, and although my late husband was ill we muddled through together somehow.
I seemed to spend every other day at the hospital having bloods tested or attending some appointment, but we’d make time for coffee sometime in the morning, and then go home and I’d have a rest most afternoons. That’s something you obviously cannot do whilst you’re working.
I’m sorry but you really do need to realise you have a serious illness, and will continue to do so for a number of years, but, and it’s an important but, it can be managed - by the correct level of steroids and a change in lifestyle (albeit temporarily). Life does go on with GCA, but as the saying goes “it’s life Jim, but not as we know it!”
Absolutely you have convinced me 100% to slow down. How you muddled through with your husband’s illness, I have no idea. I am throttling back. Is it ok to go to the store, do errands as you feel you can? Were you ever at a point where you laid around all day?
I think my main concern now is if I should stay on 80 mg until Oct. 15 when I see the rheumy and if I do will that make tapering more difficult in the long run?
My opthalmalogist is only good to do biopsies and does not follow GCA patients past affirming their sight has not been impacted. Sad to say he is a little clueless.
My neurologist originally diagnosed but does not follow GCA patients. So basically right now my choice is to stay on 80 mg preds for the next three plus weeks until I can see the Rheumy on October 15, or cut back down to the 60 mg.
I am not sure how much damage is being done on the predisone at 80 mg for three more weeks or how that will effect future tapering.
Do you have any thoughts on all of the above and please accept my sincere thanks for your mentoring and helping me to understand this process. I am willing to access some humility and realize my life has come to a screeching halt and take that as a message to listen to those who have walked this journey before. Do you ever get to a point where you feel good again?
Hi,
Yes you can continue to do errands, housework etc, but you need to do one thing at a time (forget the multi tasking for a while!). Do what you need to , then sit for 10 mins or so, have a coffee or whatever, or do nothing. Then you can do the next thing - you can’t give in entirely - that wouldn’t be good, but you have to take small bites. We are so used to doing 2 or 3 jobs at once and probably thinking about a couple more as well at the same time. That has to be jettisoned for a while - your body and mind can’t do that - and I think that’s what most people find difficult to comprehend. Some may see it as a weakness, but what comes with experience and, dare I say age, is the realisation that we can’t do everything we once did - and for most people that hurts.
Can’t say I ever laid around all day - there were some days I maybe felt like it, but no I couldn’t.
80mg is a high dose to stay at for another 3 weeks, but it would be irresponsible and unethical of me to say reduce. That is the Rheumatologist decision and will be based on all he knows about your illness. Is there anyway you can contact him, or a least his secretary before the 15th and explain your dilemma.
As I said I stayed at 80mg for 2 weeks until Ophthalmologist was sure my other eye was okay, and then dropped down to 60mg where I stayed for another 6-8 weeks. From then on, tapering roughly every month - with no flares or problems.
Pred does have a long list of side effects, but not everyone gets them, and they can be managed. My blood pressure was slightly raised, but went back down, my eyes pressures went up slightly but again went back down without any intervention. Blood sugars remained okay. I did have a Pred induced cataract on good eye, but that was successfully operated on.
Do you ever get to a point where you feel good again? Yes, yes and yes again!
Despite my traumatic start, my Pred journey was relatively straightforward compared to some. Once you have the pains under control and your head around fact you have an illness which can be a darned nuisance at times (is life changing but generally NOT life threatening) you realise you can and do get on with life again. It just takes a little more effort in the planning stage.
My GCA is in remission - has been for 2 years, but I have arthritis which I must admit causes me more problems that GCA did on a day by day basis.
At the moment you are in a dark and frightening place, but believe me it does get better.
Dear DorsetLady. If there ever was such a thing as a fairy godmother on this earth, you are definitely the one. You shared with me exactly the information I was looking for. Thank you so much. Just trying to figure out the day to day...such as what is too much? what am I doing to thwart healing?...how to manage doctor’s appts? ...dealing with housework? ... what needs to go and what stays? And on and on...how to make husband see I really have been hit hard and cannot function full throttle at the moment, despite all he wants to get done around the house(we recently moved, but of course, and the garage is full of unpacked boxes, not to mention storage sheds. The idea of tackling all that at the moment is overwhelming.
I feel at the moment I am traveling in a parallel universe contrary to where the rest of the world is. Not so sure if that is normal or not. I sat in on an online meeting today and had no ability to connect with it at all. It seems like an overwhelming depression has swept over me, and believe me I am not one to be depressed, but now I just really feel under it both mentally and physically. Again not sure if it is because I am under the influence of prednisone which I must say is helping my physical symptoms immensely (excruciating headaches gone, bad neck pain and stiffness gone, shoulder/clavicle pain gone, nausea gone) but did leave me with overwhelming fatigue, including jaw fatigue on chewing and talking and the temple pressure which actually seems better today. The less stress I have the better the temple pressure is which makes me think thectempke issue may be muscular contraction similar to tension headaches. At this very moment the rest of the world can do what they please and they will get no push back from me.
I am going to study your game plan again for daily living. Did you find you were able to add any exercise somewhere along the way eventually?
I am not even sure if I should be trying for a daily walk at this point.
So from what I understand, you did what you had to do, (doctor appts, light housework, and rested as needed throughout the day. How long did it take you to get back in a normal routine of feeling better. I know it will eventually come and want to keep my hopes up.
You are amazing by the way. Thank you so much. Such a role model.
Love,
Constantina aka People1
Also DorsetLady, Was what I experienced considered to be an initial presenting flare of GCA/PMR? I still am not sure of the etymology of the illness. Then is the idea to keep flares under control? Have you had any? You seem to be so together in every way about all this. A calm voice in the midst of the turbulence. Were you this calm when you were presenting with initial symptoms and early recovery?
And did I mention my son and daughter-in-law are flying in from DC for a visit this weekend with their 6, 4, and 2 year old? Wondering how to best handle a family visit in the midst of all of the above. What to do? Life goes on and family abounds over here on my end. (Short bio: Birth mother of nine children and 11 grandchildren English/Irish lit professor, Dean of Students, PhD on John O’Donohue the contemporary Irish poet who wrote Anam Cara, international award winning poet, original back to Earth Mother in the late 70’s/80’s, homeschooled all 9 kids,grew our own food/livestock aka Mother Earth News, etc., you know the drill I’m sure) Pure unadulterated craziness 24/7 and was going full throttle with an international job till all this hit. Any wonder at 65 I am now staring GCA in the face. Hoping this will all be for an evolution in consciousness that is enlightening and much needed.
Thank you for listening. I am quite certain that listening is the closest thing to the true meaning of holiness (wholeness) not to mention a true embodiment of compassion and love.
Thank you!
Hello Constantina,
Lovely name - Southern European connections?
Get your husband to read my Information for new patients post - I did send it to you I think. You may find he’s in a bit of denial - the wife he knows and loves has suddenly changed and he can’t understand why or how. Many partners and family find it hard to comprehend - if it was a heart attack or a broken leg they’d know what it was - but GCA - complete unknown to most - and you probably don’t look any different to normal. But don’t get me started on that!
I think most of us would agree about the parallel universe feeling - some of that is the illness, some the Pred, some the just sheer unknown of it!
Depression can also be caused by the Pred, so talk to Rheumy about that if you need to at appointment.
You are right about the stress - GCA loves it, and although you can’t obliterate it completely try and lessen it as much as possible. Your work colleagues as well as family need to be aware of your illness. They will notice a difference and wonder why so take them on board- you will need their help and understanding.
A daily walk is fine, it gives you fresh air and something else to think about - but just a stroll not a route march. Just start of slowly and for a short time - then as you feel better and stronger you can increase. Your muscles take longer to recover than previously, and they are inclined to get weaker with Pred - so keep them moving. I started (and still go to) Pilates, but many try yoga or tai chi. Just something not too strenuous or repetitive.
As I said my major pains went within a month, but then the side effects kicked in - mainly lack of sleep and minor things like thrush in mouth, a cough I couldn’t seem to shift - all due to compromised immune system.
I suppose it was about 4 or 5 months before I really felt as if my body was my own again. The high doses of Pred certainly play havoc for a while. That sounds a long time, but in the great scheme of things it’s not really.
I’m not amazing, I’m just a strong willed woman ( from a long line of strong willed women) who found a way to get through a very difficult period in my life - as will you. You just can’t see it at the moment.
Take care.
Interestingly enough we sound so similar, in regard to the long line of strong willed women, whicakthough may not be so amazing it can be said we simply do what must be done, regardless of the obstacles before us. In regard to heritage, my mother is from Greece, (hence Constantina) and my father is from Ireland. So Irish maiden name and Greek first name. I just came back from spending a month in Ireland in July where I should have realized something was starting to creep up on me.
Well I am looking forward to starting a taper. I was on 60 mg for about two weeks and 80 mg for three days, so if the opthalmalogist thinks I am out of the woods on eyesight ( had lots of blurriness but no vision loss) I will drop back to 60 mg and ask him if he advised to stay on 60 mg for the next few weeks till I can get in to see Rheumy on Oct 15. The issues with temple pressure may also be related to all the healing going on with the TAB healing, numbness, pain, re-sectioning arteries, etc and was not having temple pressure in initial presenting symptoms, however the prolonged 3 week excruciating headache was so bad I could barely notice anything else. Not to mention I decided to detox off all sugar and grains for what it’s worth in regard to reducing inflammation in body. Have no clue if that is helpful, but thought it would be worth a shot. I do not know if you had any appetite issues or not but with the headaches, neck and shoulder pain came complete loss of appetite so cutting out sugar and grain has been easy, since eating us not on the top of the list of my priorities at the moment anyway. Taking the prednisone with food but no voracious meals. Not sure when the appetite will come back yet but maybe loss of appetite is the body’s way of saying it is not too excited about taking in any more substance that will incite the inflammation to riot.
Excellent advice about husband along with reference to information. I think I will begin adding small walks. I have dogs to walk (2 Bouvier de Flanders, a French Bulldog, and a Doberman) so that gives me an excuse to stay on my feet. We live in Amish horse and buggy country with our neighbors all being Amish if you are familiar with that sect so can walk country roads. I am a certified yoga teacher so think I am ready to incorporate some gentle yoga at this point. Did you ever try to do anything with light weights and if so what point in the journey?
Pre diagnosis - in the last few weeks in particular when I had jaw claudication I lost my appetite completely- mainly because it was just too painful to eat.
You may find that the Pred does make you feel hungry - many do. So it’s from one extreme to the other.
Life’s never boring with GCA!
I am in awe of you. Seriously. Xxx
People. I want to hug you. I haven’t got the energy to write atm. Can you feel the hug? Xxx
Thank you Daisychain12. I am trying to muddle through it all the best I can at the moment and somehow try to see all the value this experience may bring to any personal evolution in consciousness on a variety of levels that might somehow result. I have found just resting seems to help and laying in bed doing nothing seems to increase my strength a bit. I am throttling back as DorsetLady keeps suggesting. It’s really interesting but months before I came down with the initial horrendous headache unrelenting attack, neck pain, shoulder pain, nausea, no appetite, etc., which went on for at least a month, I kept feeling like I was somehow losing power. No other way to tag it...losing steam and wondering how long I could keep up with it all. I do not know if the inflammation had already started at that point but would not be surprised.
Thank you for your kind words!
I swear I could have written every word of that xxx
Yes indeed I can! Beautiful and sustaining!
Yes and it lasted nearly all the way through the 5 years but it did become more frequent.
Fatigue seems to play a huge part in many illnesses I put it down to the body trying to correct what is wrong and it tires itself out and it is the only way to stop you and mkae you rest.
Also remember that when you come down to lower doses - your adrenals are not working and that means, there is no extra for flight or fight.
The Spoon Theory is a good read. It helped me understand fatigue better.
Well very good to know. Thank you jinasc. Where are you at in this journey now? Are you off meds?
Coming up to start of 12th year in remission.
No cause or cure...........not yet...........but people are working on it.
That is so awesome jinasc. Were the first few months the worst?
pmr-gca-northeast.org.uk/st...
Remember no two journeys are alike. We are all different in so many ways. Yes we might have two arms, two legs, two eyes, but we are different.
I was on 60mg and I found i had to have an afternoon nap as my energy was zero by about 3pm
Ohhhhh, yes, for sure! I was on 80 mg about 8 months ago. I was up all night hanging from the ceiling and totally wiped out and fatigued during the day, but not able to sleep during the day either. It does get better, but I stil, gave good days/bad days. Best of luck!
People1 in reply to
Thank you so much Mamici1! Could you tell me how long you were on 80 mg? I am trying to determine if I should stay on 80 mg for the next three weeks until I see my rheumatologist on Oct 15. How long were you on 80? Longer than three weeks and what was your tapering dosage?
in reply to People1
No, I think it was only two weeks.... but long enough to make me think I was going crazy though! The really bad fatigue lasted longer than that too... it wasn't until I below 40 that I stared to have nap free days! I'm on 27.5 now and still experience fatigue from time to time....
People1 in reply to
Thank you Mamici1. I am wondering if my fatigue is not a response to the high doses of prednisone in addition to just the illness itself.
Daisychain12 in reply to
😭😭😭😭. Oh golly I am fatigued every day and most days I have several naps. I promise I am not lazy by nature. Melissa how are you today?? Xxxxx
Hi People1, I had severe fatigue for over a year. Started on 60mgs of pred. Doctor said that it was a combination of the GCA and the pred.
Primarose, how are you doing now? Did you ever feel any better?
Hi People1, yes thank you, after 16 months I do feel "normal" now, I can do what I used to, albeit a lot slower but who cares.
Dorset Lady's advice is the best, I can relate to that.
As I've mentioned before, it takes time to come to terms with having a serious illness and the old bod needs rest.
Thank you so much Primarose. The value inherent in those who have gone before is beyond helpful. I have three weeks to wait for a rheumy visit so hopefully can be patient until then invregard to tapering. Did your symptoms present with an official flare and then stay under control? Did you have GCA and PMR?
I have GCA. My initial symptoms started with jaw claudication, a very tender scalp and head pains which grew increasingly worse as the days progressed, the head pain was so bad that I really thought I had a brain tumour or something nasty. I had lots of raised bumps on the temporal area, which I found out later were the arteries. The hospital, during my stay, took photos of it, I dread of think what I must looked like in their medical journals.
Eek, horror!
The first dose of 60mgs of pred relieved the head pain dramatically, it took about a month before the jaw claudication resided and then I started to taper on the preds. I was told not to taper until the jaw problem was gone.
I only had one appointment at the hospital after being "released" and have managed very well with the help of my doctor, we are working as a team, he thinks that I am sensible enough to manage my own tapering and it seems to have worked very well.
Same as you, I had a feeling of malaise and felt generally out of sorts before the onset of GCA.
Fabulous advice xxx
I too was on a “ just in Case it’s GCA” 75 mg and even much higher for two days. Then drastic reduction. Xxx
Daisychain12 did they ever determine a diagnosis? Was it GCA or PMR or something else or are they still tracking it?
I had two big arterial biopsies fro each temple. Also MRI of head. No sign of GCA but initially they were ALL ( including a top professor) completely convinced I had it. So while I waited for the op and results I was put on 75 mg. “ just in case”. I understand this as my symptoms were 100% matching GCA. However it was decided I don’t have it. I do have PMR though. At the time of my biopsy op my head pain was extreme so I was on either 125 or 150 for a couple of days. Horrendous. If I could have had quicker op I would have been spared weeks of hell trying to reduce. I’ve been on over 25 for 8 weeks with few weeks at the 75. I then was told by my rheumatologist I must rapidly reduce as opposed to taper. I came down from 75 to 25 in just a few days and now I’m down to 13 today. I will now taper properly and slowly. If you click on my name you can see my crazy posts over it all. But please don’t be alarmed. We are all different. It is manageable and you can do it. Xxxxx
Daisychain12 I also had two temporal biopsies and did you feel pressure and tightness at the biopsy sites/scars for awhile? My skin over and around the biopsy sites are numb too. Did you have these issues post-biopsy as well as described above? Is it possible to have horrendous headaches, neck pain, shoulder pain, painful scalp, and it turn out to be PMR and not GCA? My left biopsy was totally negative but still waiting for results of right.
Yes I have all of those post biopsy issues you describe. Mine was about six weeks ago and still numb and lumpy. My diagnosis is PMR with no explanation of pain in head. I used to get severe migraines but this feels different. I don’t want to confuse you though. It’s important that we look at your symptoms on their own xxxx
Thanks Daisychain2. Really appreciate hearing your experience. Sounds like the biopsy after effects stay with us for awhile.
Yes but honestly no big deal really xxxx. The scar etc is minor compared to the rest of it. The not knowing is the worst xxxxxx
Not what you're looking for?
You may also like...
80 mg of prednisone now recommend
how to treat me. Anyway she did say to try going up to 80 mg of Prednisone for 1 week to see if...
58 days on 60-80 mg of prednisone- Acupuncture to treat prednisone headache?
Has anyone tried acupuncture to treat headache from prednisone? Primary Care physician is...
Down to 5 mg of prednisone
on 1/3 and doctor appointment on 1/10
Overall I feel good try to go to the gym everyday to ride bike
The power of 0.5 mg prednisone
methotrexate a few weeks ago, and was tapering my prednisone. I went from 7mg/day to 6.5 and fell...
Fatigue at 7.5 mg prednisone
To split or not split 40 mg of prednisone
Got heartburn on 60 mg prednisone
5x1 mg or 1x5 mg that is the question 
Tapering down to 1/2 mg prednisone 
