I need to ask this question as I m new to this site and have learnt a lot but still not quiet sure how GCA is going to effect my life ? During the week I've decided my hall and landing needs a painting.. This is something I would do myself and would have it done in no time, (I would be the type that would get in there and get it done) but over the last couple of days between going to the store to pick up paint, and doing half of it (that's hall and landing ) I found I was dragging myself felt it in my hips and body in general) is this normal for GCA ? And is this something I will have to get use to from now on ? I am down to 10 mg steroids as from last Tuesday coming down from 60mg since middle of November and think I ve to start been realistic about what my illness really means and what I am capable of doing?
Thanks Lucy
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Lucylooloo
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Gosh Lucylooloo that was a very rapid drop. I am surprised that you are contemplating anymore than your bed right now!
Welcome to this community of supportive, knowledgeable folk.
You need to remember that you do have a serious systemic illness even though the Pred is mopping up some of the inflammation and therefore some of the pain and stiffness. You really do have to pace your activities and get plenty of rest - much more sleep and rest than you are used to. You may need to consider raising your dose a bit to obtain more pain relief - not to enable you to paint your house. The good news is that you will get better from this but do treat it with great respect.
your reduction from 60mg to 10mg within 3 months is virtually suicidal! You should stay on initial dose for 4 weeks, and then reduce at 4 weekly periods ( I know some plans say 2 weeks, but 4 is better) making sure you have no return of symptoms or raised blood markers before each reduction. I’m guessing you reduced at 10mg a time, well that’s achievable to say 20mg, then you need to slow down to at least 5mg (2.5mg is better) a time.
The Pred only addresses the inflammation caused by the GCA not the underlying illness itself, so at 4 months in it is still active, and therefore you are prone to a flare.
So that scenario, and you trying to do too much (sorry, you can’t! You need to pace yourself, and that doesn’t mean carrying tins of paint and painting walls).
Hopefully you will then understand your illness, life does go on, but not as before! We’ve all been there, but we soon learn the hard way that we need to live in the slow lane for a while.
I - 'we' all understand the frustrations of trying not to do too much - especially as on higher doses of Pred you can feel very able to get on with things when you're on a rather 'artificial' kind of high for a wee while.
I have PMR & GCA as well - also starting for the latter on a 60 mg dose about 10 months ago. I am now at 15 mg and have been told that is a relatively 'fast' taper so I will be sitting on this for a while yet as the way my body is behaving like I am on the cusp of what I need.
Fatigue is certainly a big factor and try as we might this continues to deplete us regardless of the Pred - which does not control this aspect. As DL and others have said rest is very important - and not taking on big jobs which can become exhausting - the last thing you need (and yes i am guilty of that - so look who's talking !!). If you search 'pacing' on this forum you'll see numerous very helpful discussions about the impact and importance of this and 'tapering' is a massive subject as well.
Best wishes
The Forum "experts" have/will address your aggressive tapering schedule, so nuff said there. Regarding the fatigue... I hear ya sister! That has been the HARDEST thing for me to accept and wrap my head around! Prior to November 2017, I worked, I volunteered, I went out everyday, usually walked 2, 3, 4, miles around town. If it needed doing, I would do it. I now find it very disheartening and somewhat INCONCEIVABLE that I cannot change the sheets, walk 0.04 miles to Waitrose, or vacuum the living room without having to have a lie down, after I complete the task! It's demoralising and really quite emotionally and mentally upsetting. BUT, I'm finding that having PMR/GCA is all about me learning lessons. Lessons about my ego, my vanity, my false sense of self, my limits and boundaries, etc. These are not lessons I necessarily wanted to learn, but the Universe had other ideas... Try to flow with it Lucylooloo... I tried raging against it, it doesn't work. Best of luck to you. : )
That's exactly how I have been feeling !!! What was the universe trying to tell me ? I am beginning to believe it was trying to slow me down. 😞 Strange
Welcome to the pick-your-battles club, also known as the who-am-I-and-what-happened-to-my-body club, and the we-just-need-some-sleep gang. Glad you found our clubhouse. Please don’t look too closely at our digs. If you do, you’ll find that the walls could use some fresh paint, the floors probably need attention (unless PMRpro has used her robot vacuum cleaner on them), there may be dishes in the sink (don’t worry-they will get done after a nap), and the list goes on — and on some days on and on and on if we’ve forgotten that we are members of the what-happened-to-my-body club, in which the list will wait until we’ve paid the price of the consequences of our folly. Ok, sometimes the consequences are worth it if the event is important or just too fun to pass up (remember, picking your battles). Please know that if you bring a bunch of cakes, cookies, or donuts to the clubhouse you might get growled at or get the evil eye from the Pred-made-us-give-up-our-beloved-carbs members.
Ok, ok, I’ll stop with the club-talk. My only excuse is that it’s 1:43 am and I’m hanging out with the other I-can’t-sleep members. (That was the last one. I promise.)
My advice is to forget the walls - unless looking at them is going to become stressful. In that case hire out or ask for assistance. Or be prepared for those unwanted consequences-if you decide to go on with the project. (Oops.. sorry, I see that you started it. Hope the consequences weren’t too great.)
These diseases make us rethink how we do things. Example: i now drive my sack of garbage to the curb. My driveway is just long enough that hauling it down is problematic.
Don’t worry, you’ll adjust. You’re not going to be too happy about it at first, but eventually you’ll find that slowing down has some real blessings,
One final thought: Wowza! How are you at 10 mg already? I was diagnosed in May and I’m just now between 12-10 and I thought I was moving pretty quickly. Word of warning: be careful with how fast you go from here on. It’s my understanding we go much slower from that point on.
Thanks for your reply 😄 Made me smile. I was suppose to be off the steroids from last Tuesday but a couple of weeks ago I did not feel well, so on reading comments on this site I decided to stay on the 20mg at that time. Every two weeks As advised by my Rheumatology to come down I am due back to him next Thursday. I got my bloods done two weeks ago and they were all grand CRP were down to one considering they were nearly 300 in November last so I was happy with that.
Who said you were supposed to be off????? Bonkers bonkers bonkers of them. I wish I could post the paper that has the table that shows reduction program that is a guide and usually fast in itself. I will try and find it or if someone can help it would be good. I "only" have PMR and am at the 10/9mg reduction at 19months. Your drs are doing you a disservice.
"I was suppose to be off the steroids from last Tuesday"
WHAT is your diagnosis? GCA does NOT go away with a couple of weeks of high dose pred. A study showed there was still evidence of inflammation even after 6 months at high dose corticosteroids and even though the blood markers and symptoms showed nothing untoward. Or are you also on Actemra? That would make a big difference of course.
You have been pretty lucky this far - but you are still at 20mg which should be enough. Reducing to zero is another matter altogether.
Insight329 Thanks for all your insight! I need a daily refresher course in PMR management. Last night my son said he and is wife need a break from the 3 yr.old and 1 year old. I took a deep breath and didn’t respond. Me first kicked in!
Good job, Sandy! That ‘learning to say no when you want to say yes’ is a hard one — especially when it comes to family. I think you’re doing just fine for a lady that loved the fast lane.
Thanks for the vote of confidence. There’s a fine line between taking life slowly and babying myself! My Rheumy thinks I am way too cautious with the taper but I don’t care. Vacation next week in Charleston for southern hospitality!
I don’t travel like you do. But I recently learned that the arrival day needs to be a day of good food and rest - no sightseeing ohhh boy, I learned that the hard way Hope you really enjoy your trip and that you have really great warm weather!
Let me see if I’m reading this right: You were diagnosed with GCA in November, 2017 and your doctor wanted you off Pred as of last week? Did your doctor mention your Adrenal system? Are you on Actemra? So your total treatment would have been 3 months??? Are you sure you have GCA? Aunties!!!??. Have you ever heard of such a thing?
Yes I do have GCA but yes I also inject RoActemra 162mg once weekly. No don't remember him saying about my Adrenal system but then every thing was a blank when I got this in October took three weeks for me to be diagnoised. Am I right in thinking that the injection will take over from the steroids ?
The Actemra injection is what is allowing you to reduce so fast - and it would have saved a lot of people a lot of OMG thoughts if you had mentioned that in your first post!!!!
It is possible that your adrenal function will return easily since you will only have been on a reducing dose of pred for 3 months or so. But I really wouldn't want to go from 10mg to zero in one step myself. Even after only a few months.
Sorry I did not realise that the injection was helping I think I was so in another place I did not or take in what was happening 😥 I had nurses praying over me thinking that was it 😞 As my bone marrow biopsy was not clear so. I am learning so much from this site and thanks for that.... By the way I did finish my hall/landing 😀
Also was thinking I might not reduce till I go to the hospital on Thursday as I ve been having a lot of burning sensation in my shoulders ,neck etc And quiet fatigued 😒
Please download the pdf file that is offered. I think it's table 5 that shows formal reduction for GCA and even then most people are slower than that once they get to lower doses.
Wow Lucylooloo....that is so quick for a reduction!! I have no idea how you managed that without the GCA symptoms kicking back in!! It's taken me 3 years to get down to 8mg...bit of a roller coaster I must say!! But sometimes reducing half a mg brings back my jaw ache and sore scalp!! It takes a lot of adjusting to realise things won't change as quickly as you would like them to..that's where this forum comes in. Endless pairs of listening ears and very helpful advice.
I'd say think about what you want to do and slow it all down...your body will let you know how much you can do. But if you overdo it it will take a while to 'catch up' again. Pace yourself.
One more thing.....blood results don't always match the way you are feeling. You may have normal inflammatory markers but feel rubbish!!
Yes my markers were good and yes this week I seem to be hobbling along ☹️ Think I Am coming to understand how this is effecting my life especially this week as was doing a lot.
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and would have it done in no time, (I would be the type that would get in there and get it done) but over the last couple of days between going to the store to pick up paint, and doing half of it (that's hall and landing ) I found I was dragging myself 
felt it in my hips and body in general) is this normal for GCA ? And is this something I will have to get use to from now on ? I am down to 10 mg steroids as from last Tuesday coming down from 60mg since middle of November and think I ve to start been realistic about what my illness really means and what I am capable of doing?
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