I was diagnosed with GCA June 29 and put on 50 mg prednisone. Most symptoms (awful headache, jaw claudication, facial edema, neck/shoulder pain, fever, dry cough, ESR 41, CRP 8.9) resolved. I am now on 40 mg prednisone, but continue to have fatigue, mild fever in afternoons, and weakness. Some days I feel almost back to normal, but then I relapse into the fatigue and mild fevers. Is this just what GCA feels like or should I be feeling better? My jaw is also still messed up and feels as if my bite is off. I read about flares, but not as much about the day to day life with GCA while waiting for it to resolve.
Sorry, dont suffer with GCA; just PMR. I'm only on 10 mg, however and suffer from fatigue. Not sure if it is the disease or the meds or a combination of both. Been on prednisone for about 18 mos. Have high and low days; never know how I will feel when I get up. Hope someone else can advise you on GMA.
I am GCA only and was diagnosed last March. If your headache is gone and you can sorta chew you are doing well! You have come down with pred much quicker than I. The fatigue is a pred symptom but the fever is part of GCA. There are many symptoms that come with long term high doses of prednisone. I suggest that you read about them online so you know what to expect. You are doing well😀 Ann11195USA Va
Thanks! I've read about the prednisone side effects, but it's hard to tell what is pred and what is GCA. The medical websites make it sound as if once you start on prednisone, the GCA symptoms go away-- and many of them did, but I mostly was wondering if other people with GCA had lingering side effects while on prednisone. Can you tell me more about what your first months were like?
Ok, like you I had a headache which made me feel like my head was going to burst, jaw claudication, a fever, numbness in my mouth and a very sore neck. I started at 80 mgs of prednisone and immediately had multi side effects: no sleep, hyper jitteriness, moon face and other swelling, weight gain after original weight loss,etc. Now I am at 20mgs and my sleep has finally improved. My blood press. is Ok, no osteoporosis, and blood sugar is Ok so far...rheumy monitors every month for now. No headaches, no jaw problems, no fever .., all my issues have been pred related. Keep us informed as you progress, Ann11195
Hi archprof,
diagnosed with GCA in April 2012, started on 80mg, now down to 4mg! Unfortunately, although Pred is brilliant at controlling inflammation at the right dose, it has lots of side effects, mostly nasty. But it's what we have to live with, particularly with GCA and the possibility of sight loss (in my case the actuality of losing one eye before diagnosis). And not everybody gets all the major side effects, it seems to be pot luck.
You do have to learn to pace yourself, you cannot do what you used to you, annoying though it may be, and people will say how good you look, and yes you do, but they don't know what's going on inside!
Once you've been on Pred for a few weeks, it takes over your body producing its own cortisol, so when you do any activity your body doesn't compensate with an adrenaline burst which is why you feel fatigued. It's similar to a diabetic relying on insulin once they're on it. However, our bodies usually recover and start producing cortisol once we get low enough on Pred, but that's way into the future for you.
As you have already found out, some days are good, some days not.. Afraid you have to go with the flow, and not do too much on the good days. And learn to say "no" to some things, unfortunately. Most important is learn to be patient, you don't have to do everything today! Become
Mediterranean, and take the Mañana attitude! Try reading Kate Gilberts book " PMR GCA - a survivors guide" available from Amazon or PMRGCA UK website.
Note for Moderator, I forgot which site I was on so just delete the previous post sent for moderation.
archprof, yes it is unfortunately quite normal to have some bad days interspersed with the good ones. But you may have reduced by a little too much too soon, for instance did you reduce from 50 down to 45mg in the first instance? Also sometimes, the bad days follow a day when you have simply overdone things. Just because all the symptoms go away, it doesn't mean that GCA has gone away - it simply means that the steroids are trying to get hold of the inflammation and keep it under control - if you overdo things GCA has a nasty habit of coming back to bite. So lots of rest is needed.
If you go to the home page of this community you will read various links and find two excellent books available about "day to day life with GCA", one from PMRGCAuk called Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' written by Kate Gilbert, ex chair of the charity, also available on Amazon, with all royalties being donated to the charity. And the other produced by the North East Support Group and Charity called 'Living with PMR&GCA. You will find them of enormous help. Meanwhile keep coming back here and there is always someone around to advise you from their experienced with GCA.
Importantly, remain alert to any problems with your vision, such as blurring or pain, or pain in the temporal areas, in which case you will need to go straight to A&E (emergency room) for immediate advice and treatment.
I had GCA now in remission.
Classic Symptoms and so pleased you are looking for information as knowledge is power.
What you describe is classic up and down, fatigue.
Yes it does get better but it is a long haul and you have a lot to learn on how to cope with this change in your lifestyle and it is a change, no good beating about the bush. It is manageable you just have to learn how to listen to your body and understand that you must go with the flow.
I can assure you there is light at the end of the tunnel, it is just that we do not know how long that tunnel is and everyone's tunnel is a differing length.
Follow this link to the pinned section on this thread http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 ; then follow the link to the North East site and read everything you can on it - bit at a time. There is a DVD available and a booklet called 'Living with PMR & GCA'.
This is one of the unsolicited comments on the booklet.
"Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago."
Then continue to use this site and ask away.
Good luck on this journey none of ever wanted to undertake, but what I can tell you is that we have learned a great deal over the past 8 years.
I have recurrent GCA * this time have been on 60mg for 4 months, managed to get down to 44 with small steps then a flare sent me back to 50mg, where I have remained since whilst having 2nd opinion, being generally unwell etc etc.
My symptoms linger on each time I reduce & although less severe never really clear off completely.
That makes me nervous about reducing & I'm being "persuaded" every time I see rheumy to add other drugs to the Pred.
I still feel I can reduce slowly & creatively without adding other meds & so am still in th "experimental" stage of finding out what works & what doesn't work for me.
This "attack" struck in July 2014 so I'm a year + down the line & only a teeny bit forward but I reckon it's worth going very slowly to find the right way forward. I have to fight my impatience & keep reminding myselfthat one day I will be very much better than i am now.
Many in the medical profession believe what they read in treatment manuals is the cure all for everyone. Needless to say we're all different and many different approaches to reducing have been described on this site.
Also many different problems encountered along the way have been posted. Keep asking your questions here and someone will pop up to help you.
All the best
I was diagnosed with GCA at the end of last year. Started on 40mg prednisolone and due to a couple of flares, have been back up to 40 twice. Currently tapered down to 30mg.
I have been incredibly fatigued for most of this time, sleeping for an hour or two in the afternoon. It's hard to learn to pace yourself, as when you do have a reasonable day, it's tempting to do things you used to be able to do easily.
A flare, rather than Pred withdrawal symptoms, can usually be spotted by the GCA symptoms increasing over several days, rather than an immediate reaction.
Good luck.
Thank you-- I will look for that book. I have to go back to full time work in a week and I'm wondering how my body with handle that. Your descripton about activity and adrenaline is especially helpful-- much as I read articles and websites, sometimes have a more personal perspective makes it easier to understand for my own situation. Thanks for taking the time to share this with me!
Thanks for the reply and the suggestions-- I live in New Mexico where there is a serious shortage of doctors-- so I couldn't get in to see a rhematologist for three weeks and the first ophthamologist visit is in November. So the first reduction (from 50 mg to 40 mg) was ordered by an urgent care doctor-- with a rheumatologist following me now, the reductions will be more sensible. Your explanation here of the process is very helpful.
Thank you-- I'll definitely get that and read it-- I don't know anyone else who has GCA (or PMR for that matter), so it's such a relief to have people to talk to who have been through it. Someone above mentioned how people say, "you look great" (even the nurse in the emergency room said that to me when I asked why my face was so swollen)-- as if looking "great" and feeling great were the same thing. I can't tell you how great it is to have some perspectives on what I'm feeling!
That is really helpful to know-- somewhere recently I read that flares usually start with whatever your FIRST symptom was when you developed GCA-- in my case that would be jaw claudication and shoulder/neck stiffness/pain (although I didn't recognize them as such at the time). Has that been your experience with the flares--that whatever your first symptom is what came back first with the flare? Your description of the flares involving an increase in symptoms over several days is just what I need to hear.
I'm so sorry to hear your disease course has been so rocky-- it is hard to think about what lies ahead and where to put what energy I have on a daily basis. Thank you so much for sharing your experience.
Yes, my flares usually present as my early GCA symptoms, in my case, feeling flu'ey with temple pain.
Also worth being aware of is that your ESR/CRP markers may not be high during a flare. On my last flare, they were normal, luckily the rheumatologist recognised this, whereas previously they had been high during a flare. It's a matter of trying to read your body, not always easy!
archprof, my experience with both GCA and PMR was that the worst symptoms subsided on the 40mg starting dose (head pain, jaw pain on chewing, fever, nausea, loss of appetite/weight, ESR 46, CRP 65 - my ESR/CRP had been 92 and 157 respectively a year earlier but consultant/GPs failed to find a diagnosis for what had actually been PMR). What did remain was some blurred vision and some of the body pain and stiffness. My rheumy told me at the first appointment that if any head/temporal pain returned I was to contact him immediately - obviously that would be what he would consider flaring inflammation of GCA. The continuing slight blurring of my vision, he put down to the steroids themselves. Unfortunately, the fatigue you are experiencing is part and parcel of the illness - I used to find it could hit out of the blue in the early days - I once fell asleep at a friends' house following a meal! So when your fatigue strikes, don't try to fight it as that won't work with GCA and you will fare better if you give in to it and rest, rest and more rest in these early days of the disease. But stay positive, you will get better.
You are going back to work full-time in a week! Do you have to? That is going to be very difficult. I was signed off work for a couple of months at first, then tried to go back on a gradual return, doing a few hours each day. I caught a very bad lung infection from a colleague and ended up in hospital. I was then signed off again for a couple of months, but in the end I decided to call it a day. I didn't want my employer to have to keep waiting for me to get well and I was getting stressed worrying about it.
Looking back, it was the best decision. It would have been impossible for me to do my job and save my health.
archprof
Full time could be a pretty big stumbling block. Is it possible that you could ease yourself back to work or work from home most days?
Do you have a Health Professional in your workplace, some one you
can talk to and explain exactly what you have?
Stress can and does play havoc with GCA and most auto-immune illnesses and GCA can be very problematic in the early stages.
Is it physical work you do?
PS - can you alter you profile to add where you live
ie archprof USA we will then no instantly that you are not in the UK. Helps when replying.
Those numbers are so high! I'm interested to hear about the vision and your rheumy suggestingn it was the steroids-- I just saw my optometrist for an annual eye exam this week and she was so surprised by the dramatic numbers changes that she wouldn't give me new glasses-- thinking it was the prednisone. I have pretty poor vision anyway, so it's possible I have had some GCA vision accuity change without knowing that's what it was. I will now monitor more closely, especially for blurring of vision. My rheumy didn't say anything about what to look for as I taper-- he seemed to think there would be no return of symptoms or flares. Unfortunately, by the time I saw him, I'd been on steroids for three weeks and had none of the "head" symptoms left.
Thanks so much for sharing your experiences-- it is very helpful.