Normal day?!?
Hello fellow warriors...this may be a daft questi... - PMRGCAuk
Hello fellow warriors...this may be a daft question...but what would be a fairly normal/ stable/ manageable day with GCA...? Flare/ relapse?
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Temoral
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45 Replies
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Sorry, but I’m too silly to understand what you’re asking. What’s the situation?
Probably my lack of clarity in the brain fog! Every day with GCA appears to be different...in fatigue levels, strange sensations on face, ear buzzing, dizziness, diarrhea, but not in any pattern...so difficult to know what is GCA and what is due to steroids. Is there a normal day...or should I just expect, and try to manage, the storm of symptoms.....?
It’s difficult to say because I was on a higher dose at your stage and it’s difficult to tell whether you are on enough to control the GCA. I felt very weird all the time with pulsing ears, a stuffed up feeling in my head and face, sound of blood pumping in my ears, sleep deprived, weak, jittery and foggy headed. When you say you are impatient do you mean you’re trying to get on with things or that you feel you should be better by now?
PMRproAmbassador
I don't understand what you mean either.
Hi, looks like you are at the beginning of the journey. So, the expectation is that the level of prednisone takes away any headaches, scalp tenderness, eye problems caused by GCA, etc. etc. You will probably lack the energy to do more than one or two main things in a day. So, more resting. Sleep can be problematic on high doses, follow good sleep hygiene.
It gets better slowly so just roll with it.
Best, fm
Thank you...yes I am only 3 months in, and on 20mg...and fatigue is difficult...pacing is definitely the key...but only being able to do the very minimum is difficult accept...I know, patience...not my strongest quality...vertical learning curve😉
Yes, patience is key. You can’t rush the healing and if you try you will relapse and have to backtrack. There are things you can do to help. Get some fresh air every day, try for some short walks. Drink plenty of water, eat a clean diet. Stay away from processed food and sugar. Naps are great. Avoid stress. Learn to say no.
Thank you forwardmotion for your empathy and understanding...I am trying to work towards your suggested daily goals...and I don't drink alcohol or have any processed food anyway...prescription for patience needed😉 hope you are keeping as well as you can too x
Brilliant advice and I wholeheartedly endorse the part ‘say no” to things you simply cannot manage. I failed to explain to my children as one was newly pregnant on IVF and the other couldn’t keep a secret so I bore the worst of it alone. If you have support, Marshall it and put yourself first for once. When you feel better, and it could be a year before you are back in control, you will know who to trust with your energy. I had no idea how much energy I was giving away to vampires till I had to rely on them: sad experience. You will do better if you heed the very good advice from the folks here who’ve been through it.
Lollybygolly....you are so right about the energy Vampires! I know just what you mean...and how often we have not put ourselves first, and how much those people had become used to expecting us to step up to their needs. Self care is not the same as selfish. Thank you for pointing this out and underlining how we are important now. I hope you are pampering yourself too x
Old habits die hard but I’m trying! 🙏
To be at 20mg after only 3 months is a very speedy reduction - and that could well be underlying your problems. Did you feel better at a higher dose?
Accepting it is the hardest thing. Managing it is the next hardest thing, particularly as you can often force yourself to do some small thing, and then pay the price later, so it's not always obvious what caused it. If it's any comfort, I also have weird sensations in my face most of the time, and my ears sometimes play up too. Not too worried, because neither of these has developed further.
Three months in and on 20mg...having been on this journey myself this year, I have a feeling that you were probably started off at 60mg??? I didn't know which way was up for about six months and I feel that was because the pred was reduced so quickly. It was only when I had a flare-up at 10mg, and had to go back to 12.5, that I felt like a normal person. So, to me, I'd definitely come down too fast. I'm now taking a slower pace and feeling better for it. As every one says 'patience is the key' and be kind to yourself. This journey is so frustrating.
Thank youx
PMRproAmbassador
Have you tried keeping a diary of dose/activity/symptoms? If you are on enough pred then many of your symptoms should be considerably better so dose is significant. Other things may be made worse by fatigue - and if you have a good day and do more - probably too much - then it may be followed by a bad day or two. You have to do your part too - taking pred is not a magic bullet that lets you go back to pre-GCA living. You must help manage the symptoms by resting and avoiding triggers for fatigue and symptoms.
So true...yes I keep a symptom diary and a rating on the spoon theory.
Just reading DL's comment. Can I say most people need as much as 6 months to get to 20mg - and even then they often need to go back up. I think you need to discuss this with the doctor managing you.
Hi, Temoral. A 'normal day' is difficult to define. Normal for one person may be very different from another's. There is no pattern that would apply to everyone. Someone diagnosed on the same day as you, with identical blood markers, started on the same dose of steroids with the same rheumatologist is as unlikely to experience the same journey as you as waking up tomorrow to find that you are on a sun-kissed beach in the Bahamas when you haven't bought a plane ticket. 😆.
If you are asking how to manage your symptoms I would say use your knowledge of how PMR/GCA affects the body, ensure that you are on the correct dose of medication to control the inflammation in your body, be alert for any changes and seek guidance from your medical practioner if you are worried or concerned and maintain as healthy a lifestyle as possible.
DorsetLadyPMRGCAuk volunteer
Looking at profile, would say you have been reduced too quickly, already having had to go back to initial dose of 40mg once….and in November you were on 30mg, yet today you are on 20mg….no wonder you and your body are in such a state of flux!
On GCA doses you are going to get some Pred side effects, but honestly you shouldn’t be getting all the other issues.
As others have said, you need to keep a diary, and then you can see patterns….and highlight what you are doing, or not doing, that is causing the mayhem.
Plenty of rest (absolutely essential) and the correct level of Pred to control your illness and keep you on an even keel, which you obviously aren’t at the moment…..
…and there is no quick, slick answer, you have to work you own way through it…but looking at things methodically (which I know isn’t always easy) you will get there.
If you are being rushed by your doctors to reduce, you need to tell them it’s not working, and come to a more sensible plan.
Thank you...sometimes difficult to convince the Rheumy ..but everything you are saying makes so much sense
I know it’s difficult to convince a lot of Rheumies …and for some patients their tapering regime works, but for others it doesn’t. But if you don’t tell them, and give instances they will just assume it’s working for you…and at the moment it’s not?
I know my circumstances were vastly different to many, but I was on starting dose of 80mg for 2 weeks and then 60mg for 8 weeks……but then could reduce to 20mg quite quickly within the next 4 months.
Result, GCA well and truly zapped early days, and no flares - ever! No Rheumy involvement - Ophthamologist & GP.
This is an excellent question Temoral. What to expect about how you feel is something the docs say nothing about. I went away from consultations thinking I should be feeling more or less back to normal and was worried because I wasnt. I had all the low level symptoms you and Snazzy describe so well below for four months constantly until I got down to 17.5 and then on and off after. I wrongly thought were mainly pred tapering. I only bothered about significant stabs around temples. Major tiredness for me went once once down to 15.
Having said this, it was possible for me to work through these and still successfully taper. But only when I was put on a sensible regime of slow tapering, eg around a month on each reduction from 20. When I tapered I got symptoms again but they resolved after a fortnight - it was like the illness grumbled then said, 'oh alright then'.
Now I have flared after the vaccine and reverse-tapered from 6 to 15 I can literally feel the battle between the pred and the immune system. One day immune system is in charge = cheek stinging, scalp tingling , ear pressure etc; the next pred takes over and my head feels calmer. I have agreed with rheumy to stick at 15 for a month and taking an overview unless things get worse.
Sorry for long post but my conclusion is:
*slow tapering of around a month on each dose after 20mg is likely to be best - your body needs time to adjust;
*low-level symptoms should be monitored but don't neccessarily require action, provided your doc feels this is acceptable for you, and provided they don't get worse and that they resolve in a reasonable time;
*keep a diary so you really get to know your symptoms and any patterns.
Thanks Viveka! This is so close to what I am experiencing...really helpful and supportive. I hope the next stage evens out for you too. X
Thanks, you too! I try to keep positive that I felt fantastic on 7mg; really, really well; it was a bitter pill to flare because of the vaccine supercharging my immune system and be set back about 6 months. However it was also a good warning for the future, because I had become blase that things were fine and I wasn't giving sufficient respect to the underlying illness which was still lurking. X
Hello Temoral
Have read all the exchanges with great interest … ( the things I have taken away for myself are, keep a diary, and learn to say “no”.)
Like you, my preoccupation is to know whether my constant state of lead-like jelly legs, brain fog, sudden bouts of weariness are manifestations of GCA ( in my 16th month now) or a result of Pred and Methotrexate. No one, it seems, has the answer to that, including consultants. )
So I guess we just press on, reducing at 1mg a month as advised, and see what happens.
(Btw, I’d like to volunteer for the extra help needed for vaccination marshalls but I can imagine the response. I suppose it’s not a brilliant idea. Shame.)
Keep safe.
Like you, my preoccupation is to know whether my constant state of lead-like jelly legs, brain fog, sudden bouts of weariness are manifestations of GCA ( in my 16th month now) or a result of Pred and Methotrexate. No one, it seems, has the answer to that, including consultants. )
Combination of all 3 probably….
Yes that’s what I presumed. Thanks DL
Actually would say legs and tiredness is more Pred, and brain fog both Pred and GCA…no experience with MTX - but in FAQs MrsNails has posts about it.
Plus I'd add 16 months of a very different lifestyle. I know my fitness levels have plummeted in the last 2 years - but even the very recent habit of a daily 1/2 hour walk is beginning to make the legs a bit less jelly-like! Even after walking up a (very small if relatively steep) slope 
Hi Frenwen - what dose of Pred are you on now?
Hi Mrs N ... now on 7mg, reducing 1 mg per month, starting (twice) from 60mg. I was going to ask you experts - at what number should one try the stop/start plan, as opposed to just 1mg per month without variation? x
7mg - the Physiological Dose - will explain “lead-like jelly legs, brain fog, sudden bouts of weariness” that’s how l feel when l am on too low a dose especially under 10mg
Also 1mg drops are too much for most people as anything under 10mg is more than 10% of the previous dose particularly when we reach around 7mg; you should now be considering 0.5mg. Both my current & previous Consultants always advocated 0.5mg drops from 10mg
I’m on 10mg - but won’t consider any kind of drop before the end of the month, l’ve come down steadily from 15mg (again) in the summer but l have the approval of my Consultant to go as slowly as l think fit…..
What dose of MTX are you on now? I’m on 25mg now & it’s brought me down steadily since the Summer so l’m very pleased about that!
A Slow Taper Plan is also a good idea rather than the sudden change dropping 1mg at a time, that’s what l use over a 4week Time Span.
Best Wishes
MrsN
You're so brilliant... thanks for all of that. Only ever been advocated to come down 1mg a time, not 0.5mg; and I have to say the leadlike jelly legs I've had from week one of starting Pred last year in August - I've been on methotrexate since a flare up a few months ago, on 20mg per week. So, would you say go back up to 7.5 for a month? Or go to 6.5, instead of 6, on my next changeover date (about three weeks' time)? x
I’d go back to 8mg - if that’s where you were OK - it’s Christmas 🎅🏻 then from 1st January try 0.5mg drops using one of the slow tapers - it achieves the same result at the end of the month but slowly rather than in a big hit……
I hope that helps 🤞🏻 It may take a few days until you feel more like you did so rest & don’t overdo it 😉
I’m taking it easy - one of the little munchkins have given me an upper respiratory tract virus 🦠 Probably Charlotte - Nurseries are a Cauldron of Viruses 🦠
Take Care
MrsN
Oh no! So sorry for you.
Mrs N I can't really say when I last felt better than I do now - last year, the week before I felt a bit off and fluey and was subsequently diagnosed with GCA, I suppose... I don't know what I'm supposed to feel like as identifiable as "better" - I never got the headaches, but do get a generalised ache now and then - as I say, the unsteadiness and general blurriness has been there from the beginning of the steroids. (But has worsened since MTX, I'm sure). But because you know these things (!!) I shall take your advice and go up slightly for a couple of weeks, to see if it makes a difference, Thank you, and keep away from nursery elves bearing unwanted gifts. x
If you have diarrhoea persistently it could be due to an additive in the tablets. For 3 months I suffered crippling cramps and diarrhoea on a brand from my doctor and literally thought I would die from it as I was wasting away, who finally agreed a new prescription after which my stomach has been fine on steroids (and no proton pump stuff which was even worse)
PMRproAmbassador
What you have to remember is that the pred only relieves the inflammation and, as a result, mitigates the symptoms. It doesn't touch the actual underlying autoimmune disorder - that continues to chug away in the background, attacking the body and making you feel as if you have flu. Constant flu - but after a quiet restful day you probably feel better the next day and if you aren't careful you overdo it - and then the next day you don't feel anything like as good. And it varies for other reasons too - so that becomes a "new normal", you are unlikely to get back to pre-GCA normal. Unfortunately, too many doctors believe that pred makes EVERYBODY feel better and tell patients that. It doesn't, it has its own side effects, but the patient then feels dissatisfied or that they have failed.
Hi Temoral 😊
I can really relate to this question! As I’ve had migraines (with visual disturbances) since I was 17, and arthritis of the jaw (TMJ) and pain in my earlobe and pinna for the last ten years at least, I find gauging what is likely to be GCA and what is something else, really difficult. Additionally I think I had specific symptoms for a year before diagnosis (stabbing pains in temple, enough to stop me in my tracks, pain across top of head, nosebleeds).
Today my earlobe has stabbing pains and my cheekbone is tender (previously put down by GP to TMJ). I find myself constantly anxious about one symptom or another…not sure what ‘normal’ is anymore…..
Have decided to pay more attention to keeping a symptom diary 😣
All the best to you 😊
Nextoneplease xx
Thank you....so like my life....which is helpful to know that l'm not too weird!😉Take care of yourself too.x
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