GCA dx 2 yrs ago. Prednisone from high (early 2019) of 80 mg and very slowly now at 4 mg. As I've written so many times I have multiple health issues. I've learned many symptoms, pain, medication side effects and diagnoses overlap or impact each other. Right now the fatigue is so bad. Could this be from tapering from prednisone? I've had this off & on since getting to lower doses of prednisone but never this bad. Been on 4 mg about 3 weeks??. It's not getting better at 4 mg. It's an effort to move around, lift a book, talk... Is fatigue/ weakness good enough reason to increase dose a little? Is this common for others tapering prednisone? Is there any length of time I could expect this to get better. Rheumatologist visit in a couple of weeks. Dx 3 weeks ago with miniscus tear and medial tibial plateau stress fracture in my " good" knee. Very minor fall but nothing (in my opinion) that should've caused this. Orthopedist says prednisone & osteoporosis probably contributed to this. So I understand lowest dose prednisone ideal. Fatigue is way worse right now than other issues which are mostly nicely (knock on wood) being managed.
Fatigue from tapering prednisone?: GCA dx 2 yrs ago... - PMRGCAuk
Fatigue from tapering prednisone?
You probably know that on your current dose that your Adrenals will be struggling to produce the Cortisol that your Prednisalone or Prednisone has been supplying for the duration of your illness, at doses over 7mgs. Have you had a Synacthen Test to see if your Adrenal glands are capable of working? Even if they are it will take a while for them to wobble into life, hence the sheer exhaustion. You need to see your doctor, preferably an Endocrinologist, as a matter of priority. You could ( worst case scenario) be in danger of having an Adrenal crisis. I was given an emergency Hydrocortisone injection kit to guard against this eventuality. Having said all that extreme fatigue remains my most prominent symptom in spite of being on 10 mgs of Pred. I manage it with pacing and naps. Have it checked out!
I've seen posts about this but didn't remember at what point that could be an issue. Kind of surprised my Drs haven't me toned this. Thank you so much. I'll put a call into rheumatologist. I haven't seen an endocrinologist. Hope rheumy knows or refer me. Hope you are doing well.
Struggling a bit with Tocilizumab tbh. Thanks for asking. I don’t think our doctors are geared up to think beyond their specialism sometimes. I drove the whole thing and felt vindicated ( stupidly) when my Adrenals failed the first test. I passed when I got to a lower Pred dose. Still have the emergency Hydrocortisone injection kit. The Endocrinologist was helpful but had different priorities to my Rheumatologist. I felt caught between them for a while.
Yes. As great as my rheumatologist has been, I think he might not take kindly to any serious questioning about adrenal function or my possibly needing an endocrinologist. He's clearly been the final decision maker with all my DRs. I just restarted Actemra after 2 months off due to tooth extraction (on Boniva too). Hmm, maybe some of this fatigue could be from that. It's all so complicated. Guess if we take one step back then two steps forward we'll eventually get better. Anyway, thanks again. Stay safe.
Hi Jane, I noticed you mentioned being on Tocilizumab. Am due to start this by injection on March 10th, in order to control my RA which is totally out of control. How do you find this treatment and how long did it take to get any relief? What side effects did you get? I know we’re all different but to have an idea would help.
Am still on 10 mg of prednisolone.
Keep safe.
Initially, following 5 years of PMR and then a GCA/LVV diagnosis and the prospect of yet more high dose Prednisalone, I was very pleased. I was able to reduce from 40 mgs to 10 mgs of Prednisalone in a matter of weeks, with no flaring or adverse effects. Now, however, I have been stuck on 10 mgs of Prednisalone for weeks. I feel exhausted and ill all the time. I have developed a nagging pain in my side that radiates to my back. I am confused as to where my symptoms are stemming from. I found PMR relatively easy to manage and understand with Pred alone. I had managed to get to 3 mgs. I find it hard to work out whether Tocilizumab is doing anything positive at all. I need to decide whether to persevere with it and whether it is doing me active harm. I now feel particularly ill on my injection day, following the injection.I know that others have had a more positive experience. I have no sense of relief at all. Just the sense that my condition is worsening. I do not experience any typical PMR or GCA symptoms but I feel dreadful. Sorry not to have anything more positive to share at the present time. I have a hard decision to make and a trusted Rheumatologist to disappoint.
Don't look at it as disappointing her - it is all valuable education and she DOES listen and learn.
So sorry to hear how unwell you are.. I truly sympathise because I too am in this bad spot whereby I feel so ill, unable to cope... in experiencing such high levels of pain. PMR was never diagnosed, as I have explained in my reply to PMRpro, below. I feel abandoned by the medical professionals who don't seem to understand a great deal unless it is something they deal with all the time. It's rather worrying and scary especially when living alone.The tocilizumab is for trying to control my RA which has progressed rapidly over the past few years. I can't function really. I seem to sleep all day long, feeling so ill and exhausted. Still recovering from shingles (starting my 10th week). I do feel like a much older person, say in my late 80s.... very poor quality of life but I do want to live a little longer... and it would be wonderful to feel less pain. My RA was very well controlled for 14 years when injecting Enbrel every week. That stopped working 3 years ago when I had to stop using it prior to my total knee replacements in 2017 and 2018... It never worked again after that. I think the inflammation levels were too high. I still have high inflammation levels although I have been taking Baricitinib tablets... it's not working.
I do feel for you Jane, having to make a big decision regarding Tocilizumab... and feeling so exhausted and down all the time. Thinking of you. x
I do understand you so well. I don’t think that this is our drug. Even though I live with husband and son, I feel alone in being the moany, complainy, sleepy one. Sending you a warm hug, you are not alone. Xx
Thank you . I don’t feel I deserve special treatment, we all do but support and understanding are most comforting. Of course I feel like a moaning, complaining machine... I have become someone different over the past few years, serious illness tends to alter one’s personality.... still we carry on.
Warm hug gladly accepted and one sent back to you. Xx
No advice, but I do hope you can get to the root of the problem. From what you say it does seem the TCZ is no longer doing you any good, but what happens if you discontinue it? Or maybe you are one who does actually need a little more pred.
I wish I understood Heron. Prof Dasgupta was so positive about this drug, even suggesting that it was striking at the heart of GCA, not just symptoms.
TCZ doesn't actually look like a definitive cure as about half of patients relapse within a few months after a year's treatment. These same patients also go back into remission if treatment is restarted. The use of that language in the literature makes me think it really cannot be considered a cure as such. You've probably already read this (TCZ makes its appearance partway down the page):
uptodate.com/contents/treat...
And of course we are all different, and if PMR has multiple causes I suppose GCA does too, and likewise patients have different reactions to medications. Very disappointing when you've had good reason to expect to be feeling much better by now.
Thank you for sharing this Heron. It is very clear.
It is in a sense in that it works by interrupting the production of the cytokine IL-6 - it actually works on the cause of the inflammation. Pred is just a mop for the overflow, TCZ is a new washer for the dripping tap. But even new washers can be faulty or wear out. And the underlying a/i disorder itself continues - just it isn't causing the inflammation.It was hoped that for a lot of patients the mechanism being stopped might last much longer even without the TCZ and for some people it has. But there are other causes of GCA besides IL-6 and that is becoming more apparent with larger numbers of cases to observe.
That is useful information.
For you it will depend on whether your RA is due to the IL-6 cytokine. RA and PMR are different disease mechanisms.
Thank you. I have had RA since my late 30s....(74, nearly 75) probably before actually but although I was in huge pain and could not walk nor do anything else they took ages to diagnose it... as sero negative RA. Was in hospital for nearly a year. For the past 4 years I have had the most dreadrul time, can hardly move most days. So trying a new treatment on 10/3. No one has diagnosed PMR although I have had many symptoms ... and gp thought it was a possibility... BUT no suggestion on how to check or what to do.. So feeling rather fed up and frustrated by this lack of help. I don't really know what to do.... How do I find out whether RA is due to IL-6 cytokine?Is there a specific test? i do despair of the medical professionals at time... What should I ask my rheumatologist? He's quite pleasant and we get on well, but young and became my new consultant just over a year ago.
There is an IL-6 test - not universely available, needs a big lab, but they should send it away. Maybe they didn't know that much 40 years ago but RA shouldn't be diagnosed on blood markers alone, even then. Have they not tried biologics before? Each biologic group of drugs targets a different thing so maybe they think you have both RA and PMR so that makes sense in trying tcz first.
Thanks, I doubt my hospital would test for that. They resist any suggestion I make... It's not good medicine. Yes, here in the UK they still rely on blood markers! Perhaps a London top hospital might use more sophisticated and more accurate methods, but I live in the Midlands. It's disappointing when one really needs help. I will pursue asking for help but when one feels so exhausted and unwell it feels too much at timesAny decent doctor should see how unwell a patient is.... but not the case.
Indeed I have had quite a few biologics, which made a difference. The best one was Enbrel which gave me my life back for 14 years whereby I could do my Tai chi, go for long walks, do my gardening (very active gardening, I actually redesign my gardens, moving large shrubs etc... can't do that now), travelling, well enjoying life, sadly this has been over for the past 3 years. I am on a jak inhibitor at the moment, Baricitinib but it's not helping... and one of the possible side effects is .... shingles... which I developed on 1st January and still not fully recovered yet! surprise surprise... Big Pharma would say it's an unlikely cause.... So trying Tocilizumab soon. The problem that they decided that Methotrexate should be used with nearly all the biologics... Unfortunately MTX makes me very ill, like I am poisoned.... looked yellow, nausea always, could not eat....my poor liver was suffering. so I asked my then rheumatologist if I could stop it while on Enbref weekly injections.... she was not pleased, stating "they" (?) wanted MTX to be used with biologics because it improved its potency and she insisted it did not make patients ill.... (perhaps she should have tried the drug herself... the arrogance!) but she said angrily, ok let's try for a while and see what happens, if it does not work you'll go back on MTX... I agreed (but I would never agree to go back on a drug that made me so ill)... well Enbrel worked perfectly well for 14 years! and i did not feel poisoned anymore, although it took a few months to feel ok again, my poor liver recovering from the dreadful Mtx effects. In fact, Enbrel, an anti-TNTnecrosis factor, worked the best... all the others do not seem to perform as well, and they substitute similars - cheaper - but they don't work well so not really cheaper and not helping the poor patients.
So I will request the test you have mentioned. Thanks.
What an appalling doctor - if mtx doesn't agree with you it can make you feel awful. I lasted a monthbefore the fatigue was so bad I said no. That was besides constant hunger, weight gain, joint and muscle pain, hair falling out in clumps - I felt worse than in the 5 years of PMR without pred! There was no question about stopping - my rheumy here said, you tried, it isn't for you. I find petulant doctors obnoxious - and you are right, they should have to try the things they want us to take. I met a rheumy at a science meeting a few years ago who had developed an inflammatory arthritis. She said it gave her a whole new perspective and it changed her relationship with her patients.
It’s helpful to know someone else having experienced such problems, although I know a few people here in the UK. The trouble is that so many doctors here are arrogant and I for one have never put up with such arrogance, so it makes it difficult. Too many people think “doctors know best”! Yes still in 2021. Of course they don’t. Since I moved to the UK I have encountered such an appalling behaviour and nearly have always had to do some research when I have health problems and show gps what it might be simply because I am fed up of not being well and they can’t bother to do research themselves or simply admit they don’t know but will direct me towards someone who might know. I do miss the way patients are generally treated in France. I was so shocked when I first arrived here. It’s purely the archaic way they’re being taught and are encouraged to think of themselves as superior! Very sad. Yes, I have met the rare good gp and quite a few excellent consultants but only because I engaged with them. Here, many people don’t do that because they don’t know how to do so, are far too impressed by the title of doctor, so the vicious cycle carries on. New doctors on the whole are more realistic and down to earth.Yes I was losing hair by the handful.... She said that should stop eventually, of course it didn’t. The trouble is big pharma pay doctors/ hospitals big bonuses if they use their poison... I confronted my gp and she blushed and acquiesced! It’s appalling. I was told tocilizumab was the only biologic (an interleukin drug) is the only one I can have now without mtx! Quite worrying if it doesn’t work for me. I don’t know what I will do.
You’re lucky living in Italy where patients are helped and not told fibs.
it was interesting when my orthopaedic surgeon told me he had pneumonia and was in intensive care for a long time and then, only then, did he realise how scared and vulnerable it felt being a patient, not sure if he would make it or not! Doctors really would benefit from a dose of the medicines they prescribe.
Know exactly what you're saying. PCP in very rural midwest USA has been best I've ever had. Rheumatologist has been great too but a 300 mile roundtrip to see him. Video ith rheumatologist the past minths with covid risks. Orthopedist I just saw was an ass. Said You're not a candidate for surgery. Just have to wear braces & use a cane. And walked out." Always a quandary taking all these toxic meds to be sure. Best wishes to you.
Indeed so many of us suffer and feel that doctors aren’t always helping.... The trouble is they don’t always know, that’s ok as long as they admit to this and do their utmost to find someone who might be able to help, but their egos won’t allow it. And yes there are a few great doctors but they don’t always live close enough to where we live and when one is in constant pain with restricted mobility and living alone it’s not possible to consult them. You have an incredible journey! I do hope you will find a consultant who will be able to help you. Very best wishes to you too.
PS: what does PCP mean? Where about do you live in the USA?
PCP - Primary care provider.
I suppose she was right - it would stop eventually, when there is none left!!
They are legally not supposed to get any incentives - and I would report any doctor who told me they did.
The tocilizumab thing is correct simply because that is the only approved drug for reimbursement. There are other IL-6 biologics and a couple have been through pilot studies but not through the rest of the process.
I'm not sure Italian doctors are much better - I have a really good relationship with my regular contacts but I have to see others at times who are just as arrogant. One of the senior physicians at the local hospital is awful - rude and ignorant. He almost killed my husband when he stopped his diuretics to get his BP up faster - forgetting (if he ever knew) that that would result in the build up of fluid on his lungs because of heart failure. Luckily he realised what was happening and called a nurse to tell her he needed the tablets - NOW! The guy has a reputation amongst at least the GPs ...
It’s reassuring you have a few good and helpful contacts.... doctors’ egos are really dreadful! A really great doctor doesn’t need to hide behind a huge ego. How shocking about your husband! Sorry to hear that. Pleased he fought his group... and hopefully better now. What a worry this must be.
I will just have to wait and see if tocilizumab will help calm the high inflammation and pain. Fingers crossed. Not sure it’s safe to start it while I am still recovering from shingles, 10th week today, while I still have red and itchy patches...
Enjoy the rest of the day. It’s springlike here, sun and blue skies after a sharp night frost.
I got my degree at a medical school - and we've both worked with/been friends with doctors all our lives. Not awed by any of them - too many with feet of clay like any other profession.
Positively roasty in the sun - just come in off the balcony (the kindle needs charging 
)
It sounds like your adrenal glands are starting to wake up as they no longer have the pred giving them enough cortisol. I went through a phase when I was exhausted just lifting my arm up to scratch my nose.
Thank you so much. I'll check in with dr about this. Hope you have a good weekend.
I think it has to do with adrenals, also with GCA, now at 6.5mg after nearly 5 years & more exhausted now than for the last two years at higher doses.Have had the adrenals tested by an endocrinologist & no function but pos. not surprising at this level of pred.
Thank you very much.
From personal experience would say, like others, adrenal glands struggling to get up and running again.
My fatigue hit around 6mg and continued until I reached 3mg...and appeared randomly...no apparent rhyme nor reason...fortunately not there all the time.
I just continued reducing - only 0.5mg a time and using my slow taper.....going slowly does help, and so long as no other adrenal insufficiency symptoms arise - nausea, headaches etc, it’s really just a matter of time. Mine was probably best part of 8-9 months all told...but we got there eventually....now absolutely fine.
Also started at 80mg, but on it longer than you.
It might be worth asking for a test to check if adrenals are capable of working, but TBH it sounds about normal to me.
I can message dr Monday. Sounds like may just be another thing to get through to the other side. Can't remember but think I maybe did have this awhile back but not this bad. Patience I guess. As always, thank you so very much.
Yes it is a matter of patience ...yet again. So long as you don’t get any other adrenal related symptoms, just soldier on, obviously if you do feel worse then you need to follow it up.
But do contact doctor just to put your mind at rest.
You are very much in return of adrenal function territory - and that is the most likely reason for the fatigue. At the very least you need a basal cortisol level (blood taken at 9am) and preferably a synacthen test.
And if you feel really unwell - don't hesitate to call the emergency number. An adrenal crisis is an emergency and needs medical care.
Thank you Pmrpro! I will follow up with your suggestions and be mindful of more potentially serious symptoms.
Good evening all fellow PMR/GCA folks
I’m down to 3:5mg of prednisone. From 60mg for sudden hearing loss during PMR diagnosis..
I live alone , 77:9 years old.
Recently I am totally exhausted. I can literally sleep 18-19 hours a day.
This week particularly affected.
This dreadful fatigue started when I managed to get to 5mg prednisone ..
It got so bad that I have been sleeping on my reclining armchair, which is the only thing that I manage to get up from. No strength at all.
Sleeping in my very comfy bed has been no help, as I have been so tired I struggled even to pull myself up to go to the bathroom in the middle of the night.
I find the armchair my only solution at the moment.
My GP said if that was OK with me, it’s OK .
I couldn’t turn over from side to side in my bed.
I read recently that it can take between 3-8 months for the adrenals to function again.
I’m convinced this is what is making me so exhausted.
My friend phoned me every morning to check I’m ok.
This last week has been the worst for me as I needed to force myself to go to have a scan.
It’s like a debt , one does something extra physical one day, the next day is payback time 🤣
Trouble is that friends don’t understand the dreadful exhaustion that grips the body.
Because of the Covid crisis, I too try and sort my problems out by myself.
I’m so grateful to have this group and of course those lady’s who devote so much time with their accurate answers.
Sorry for the rant ladies, it’s not been a good today.
YuliK 😷
I wish you all a speedy recovery and keep safe during this crisis.
🌻🌻🌻🌻🌻🌻🌻🌻
Were you noticeably better at 4mg? That is plenty low enough to poke the adrenals into life - and might be safer and more productive for you in the meantime.
I can’t say I feel any different Eileen..just so desperately tired..
Thanks for your concern.
YuliK 😷
Second PMRpro's advice. You shouldn't be so fatigued you can't do anything. I was waking up feeling like I'd been run over and when I had to increase pred to deal with flaring PMR pain I was actually quite surprised how extremely well I felt those few mornings at 10 mg. Human again! One tends to forget what it's like to feel really well. I'd settle for feeling merely "okay" if that's the price of tapering, but not for feeling incapable of activity. 🤗
I remember 4 mg. That was the time when I began to feel as though I was walking through water all the time, my legs didn't want to work. I don't suppose it lasted too long as I continued tapering very slowly through 3.5 to 3 and so forth.
I sure want to keep tapering. I'll keep track of symptoms and see how it goes. Thank you so much.
Yes for sure its a flare .I've never been able to get below 4mgs in 10 years I've tried and tried ..The fatigue is the killer ..so now I'm on 4mgs as a maintenance dose and I'm staying there because life with fatigue is not life I ever want ..
That may be what I need to do. Rheumatologist said early on I may need to stay on but I think he thinks Actemra will replace the low dose prednisone. Thanks for your response. Take care!
I had to fight for it to be a maintenance dose ..but my doctor now admits it is the only way to keep me stable and therefore live a good and worth while life xx
To be fair I've just read another thread in which several people have responded brilliantly to TCZ and now doing well, some time later, free of medication. They unreservedly recommend trying TCZ. The issue I suppose is at least in part raising expectations which in not a few cases may not be met. Mantra for the day: We are all different!
No. I went to a medical school to gain my physiology degree - I'd have said had I got a medical degree.
I was offered the chance to continue with medicine - our course was almost the same as the medics. I didn't bother ...
This is probably apropos of nothing, but I've just finished reading "The Tangled Tree" by David Quammen and one of the questions I'm left with in the end is how much of disease comes down to all the extraneous, but not inactive, DNA, RNA which has found its way into our genome.
I don't know what it says about me but I enjoyed it a lot more than some of the recent books I've had to read for a book club I belong to. Like a good novel, I was sorry when it ended! Moving on to "The Genius of Birds" by Jennifer Ackerman. I think I'm fed up with reading books which are all about the problems of our society, things I can do nothing about, except muddle on in my ordinary life and try not to make too huge a carbon footprint.... I'd rather read about things which bring me a little closer to knowing better what it's all about! Have you read Grooks by Piet Hein?
The Miracle of Spring:
"We glibly talk
of nature's laws
but do things have
a natural cause?
Black earth turned into
yellow crocus
is undiluted
hocus pocus"
Piet Hein
All this, by the way, is part of my active stress avoidance strategy because PMR feeds on stress!
A lovely philosophy Heron. X
I suspect my fellow book club members think it's escapism. 😏But I continue to need the social contact.
Very strangely I actually ordered the Genius of Birds book the day before yesterday after going down an internet 'rabbit hole' following upon listening to a radio programme about birds...it looks fascinating. Like you I’ve been reading too many books about problems in the world so I've decided to go for something different. I do have rather a large pile of books currently waiting to be read so it might take me a while to reach it though!
“How do you know but ev’ry Bird that cuts the airy way,
Is an immense world of delight, clos’d by your senses five?”
― William Blake
Actually over the months I have thought of you and your success with Tocilizumab and it has spurred me on. My aim has been to get off Pred completely. I have cataracts, pre-diabetes and hypertension. I have had two positive Dexa scans but kind of dread the next one. I kind of feel that Pred ( which served me so well) is exacting a big price. However, Tocilizumab is making my day to day living unpleasant. I would tolerate this if I felt that it was achieving something but I am not at all sure, that for me, it is.
Maybe our expectations of ourselves, what the medications can do, length of time to wellness make us feel even worse or better. Inspite of rheumatologist saying this (gca) is a long term illness, because I was so active and strong, I may have thought that his warnings didn't really apply to me. Someone was just talking about how chronic illness changes you. I agree. I thought more like a teenager a couple years ago. Not anymore. I do hope you feel better soon SheffieldJane.
It is hard to put into words. A general malaise, significant balance issues, low mood, reduced mobility, breathlessness. Persistent small infections like the eye and one nostril. More weight gain than steroids. Sleep disturbance, knee and ankle pain, some nausea. When I try to taper from 10 mgs of Pred I get stabbing head pains. I feel old, hobbling about. Sorry about my pity party.
Your adrenals May be off. I was getting blood work every month while I was on prednisone. I only took it for 14 months as I am also on Actemra. I tapered down very slowly. The prednisone caused many problems. I now have osteoporosis, both rotator cuffs are torn (had already been repaired), a torn ankle tendon plus a stress fracture of that ankle. When I was initially put on 60mg, I had a lot of inflammation of my eyes and very blurry vision. It’s crazy how a drug can help one thing but mess up other parts of the body.
Thanks for your reply. Prednisone & other rx effect everyone so differently. Sounds like you've got a lot to deal with too. Actemra seems to work well for many. I'm not sure about it. I've had to go off it so many times due to infection or dental work. No long term consistent Actemra use may have made it less effective for me. Good luck to you.
Thank you for your helpful post. I am nervous of letting go of my core dose of Pred which probably traps me at 10 mgs. Even though my Rheumatologist assures me that it is extremely unlikely that I would lose sight, GCA symptoms arise and scare me when I try to get below 10 mgs. Perhaps I am in the dungeon, the door is open, but I am facing the wrong way?
100 % with you. Sometimes it feels as if the prednisone is responsible for 90 percent of my symptoms! I experience huge fatigue while on prednisone - at least I think it’s the prednisone— including very weak legs, zero energy, etc. The challenge of course is maybe it’s the GCA. Very frustrating. I am currently at 10 FYI hoping vision loss does not return. It’s hard because I can tell 10 is the minimum for me right now. Basically waiting to feel better which the allows for additional taper. Ugh.
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