I was diagnosed with GCA in April 2024 and am currently on 40 mg of prednisone and methotrexate. I have not felt “normal” by any means but recently I was able to do a bit more even with my heavy legs/arms and fatigue. However, I may have overdone it for a few days and the fatigue has increased, scalp is sensitive, temporal artery is sensitive, right temple ache, legs/arms heavier.
I am now resting more, as I have no choice. Is this typical for people with GCA? I just wonder how long it will take before my symptoms lessen (probably an unfair question…)
I’m interested in other’s experiences if you want to share. Thank you, as always.
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Moaningxcat
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Sounds as if ‘overdoing it’ for a few days may well have caused a flare….and although it may not be as common as flaring with PMR, it certainly does happen..
As for symptoms lessening, the fatigue and heavy arms/legs may well recede with rest, I would be more concerned about the head issues. It’s unlikely they will go on their own… they might, but if not in a few days then then you either need to return to previous dose -or treat as proper flare as described in link -
Thank you for the links and advice. I have a telemedicine visit with my rheumatologist next week and will ask if I should increase prednisone if I still have the head issues. My head issues have not been eliminated with 40 mg prednisone so it seems like an increase is necessary.
I think it probably IS typical - people often find after a few good days when they got overenthusiastic they then have worse days and feel as if they are flaring. It can be as sharply deliniated as one good day results in one poor day.
The other question is as to whether 40mg is quite enough - it is the bottom of the starting dose range so if you could really do with a bit more it will take longer for you to feel significantly better and the buffer zone on your limits will be very narrow.
I'd say it's typical for GCA , PMR or any chronic health issues.We've all been there at some point , especially earlier on in our conditions, when we feel a little better and try to run before we can walk.
I had GCA , and I can remember getting a rebound of pain , soreness and itchiness in my scalp and feeling a little feverish when I'd done too much for a couple of days afterward I caused my symptoms to flare up.
I soon learnt my body was not going to let me cash cheques I could not fund.
We just can't push it because we want to get something done and believe we can rest the next day and all will be fine like we used to.
Pacing is a huge part of living the " New Normal" with any chronic illness.
Taking it at an easier pace doesn't mean you are lazy or weak , it just means you're working or playing at a sensible speed that your body can cope with to help control the illness and reduce the risk of triggering new inflammation.
Preventing the amount of flares you could have also ends up making your time with the issue and tapering easier so helps your recovery in the long run.
When it comes to GCA or PMR it's the slow and steady tortoise that wins the race not the hasty hare.
If it carries on for more than a few days or feels like it's getting worse despite rest it's always wise to get it checked out though.
Yes that is so right. I try to be "on it" when children/grandchildren visit, partly to make the most of their visit and partly to reassure family that i am OK sadly I used to be proud that I was fit for my age. Now after visits I have to rest for days and I am beginning to understand my behaviour is counter productive and they don't understand how I have to plan my day with rests to get through. I have now discovered they want to help. 😀
that could be me saying exactly the same. I’m recovering from the half term visits which I’ve loved. Yesterday I spent the whole day on the sofa, dozing, early to bed then 8 hours sleep. Your post has really cheered me up 😊
Oh I agree 100%, that could really be me writing… I do anything to seem okay, but I’m beginning to realise that they just might want to help a bit more…even though I hate needing it 😳
The reason for me pushing it a bit was in preparation for a visit from my daughter and boyfriend. My older daughter has a 16 month old son and we were able to get together several times. Between the extra visit prep and the socializing, I think it was too much. My husband and I were babysitting our grandson 2 days a week, but that’s not happening now. Some guilt over that. I also used to be fit for my age as well…
I certainly found that the first few months I could feel the GCA ready to flare up and if I over did it, it felt too close for comfort. By over doing it, that meant doing some weeding for 20 minutes. Luckily the Pred side effects kept me from doing much as I was pretty knocked sideways. Heavy limbs, doing every in slow motion and feeling dulled but jittery was par for the course for months. For me a feeling of having turned a corner was somewhere around 17mg 7-8 months later. Something felt different. I was quite sensitive to Pred and it kept me down until near 10mg and then under that my adrenal function was the issue.
My experience pretty much echoes Snazzy’s. I could do nothing in the early days. I had some debilitating side effects to Pred as well as coping with GCA and it was some time before I saw any light at the end of the tunnel. We’ve all been there, just put yourself first and focus on small steps every day. I find it useful to look back and see how I’ve improved. In my case other health issues have emerged and I’m beginning to think the fatigue I’m currently experiencing is not just adrenals awaking slowly but the atrial fibrillation diagnosed after a TIA last August. It’s so hard to work out what is causing what alongside the associated meds. Just one thing, you need to advocate for yourself with an overstretched NHS. Learn as much as you can from the research and experts on here. I’m finding I’m having to join the dots in preparation for each medical appointment.
It does seem like everyone is different regarding GCA and the medications. It’s hard to know if it’s a GCA symptom or a medication side effect. Thanks for the encouragement and I hope your fatigue lessens. I’m in the U.S. so no NHS, but there is still a need to advocate and connect the dots before medical appointments.
It’s hard to know if it’s a GCA symptom or a medication side effect.
You will learn the difference….and any issue with head is more likely to be GCA - and should be followed up. The fatigue could be either or both … and heavy arms and legs are unlikely to be GCA - but could be Pred or in this scenario DOMS [delayed onset muscle soreness] following overdoing things… depending on what you meant by that.
I have had GCA since last December and was started and kept on 70 mg Pred for 6 weeks, long story 🙄 However as I tapered after that, all I did was go for a good walk on 2 rain free consecutive days in the NW of England where I live, and the GCA symptoms returned. I was unsure at first but they were unmistakable really. I had to go back up a bit and slowed the taper down and realised 2 days on the bounce was simply too much for me. Every day is a learning day with these nasty diseases!
Don't wait until next week if your temporal symptoms persist please seek help ASAP. I was started on 60 pred and it isn't fun but at least I was saving my eyesight. Others are not so lucky. They tried to take me down too quickly and they lovely people here brought me back from 2 doctor caused flares so I learnt to reduce more slowly. It is a marathon not a sprint and going slow is truly necessary whatever the so called experts say. Take care.
Hello and ive Been there! I didn't want to accept the limitations of GCA as theese lovely people will tell you
I wanted to go back and do my 56/60 hour week walk my dogs paint my house BUT I know I can't and this was AFTER trying to do my lounge in a day....it took 4..but I have do e better listening to the advice on here and life is slower ..and I feel better
Hi Moaningxcat. I am currently paying the price of overdoing things, emptying my Pa's house of furniture etc as he's now in a care-home. Lifting, twisting, loading stuff into campervan. A combination of DOMS and flare, resulting in my returning to previous 20mg pred dose till I feel more lively. Then attempting 17.5 pred, not the 15 rheumy said (too low). I've had the odd fleeting headache, but were that to be more convincingly my GCA I would not hesitate to seek advice. All the best.
Hi, I was started on 60mg for my GCA which did help alleviate some of the aches and pains but didn’t help overall and then had to take Leflunomide and then they added tocilizumab into the mix. All these did eventually help get it under control. Like you though I did find that if I treated my good days as a chance to do more I did pay the price. It’s so difficult to the get the right mix of ‘don’t overdo it’ but also ‘don’t underdo it’
I should have said my brother went to hospital in the middle of the night when GCA hit him and was put on 100mg IV of pred. Sister and I started with 60. It's not easy to slow down but it is a must!
I always thought it was 100 but I could be wrong. He had flown up to Scotland from London or Exeter that day and at 2am he got a lift to hospital as his vision was peculiar. That's all I know it was before I knew anything about Temporal Arteritis.
It certainly saved his sight whatever they gave him. He is however struggling to get off meds he tried Methotrexate. Anyway I sent him DSNS to see if that helps. This started about 2 years before me and he is 7 years younger. We thought the fittest of the lot of us but certainly high stress job before he retired.
methotrexate tablets and injections put me in bed for days, nausea not eating and totally worn out. Now no bk to pred only and down to 12.5 mg feeling so much better these days just having an issue over cataracts with my gp
You've received some good advice and support. As someone with GCA I can well remember the feelings you speak of. I can tell you it will get better; there are actually some months in the beginning I cannot recall clearly....more than anything, I felt whipped and beat (US for exhausted) and could not imagine putting my right foot in front of my left.
It is a bit of a roller coaster ride, but you will become more in tune with your body and know when to sit and rest...or lay down...before you get to the point where it takes you a day or two to feel reasonable again. Don't lose heart; you will feel better. If I hadn't met folks on the forum, who got through it and over it... I would have been so down and blue. Take the best care of you and I'm glad you'll be talking to your rheumatologist!!💞
Thank you for the kind words and encouragement. This forum has been so helpful and supportive and I am learning so much from other people’s experiences.❤️
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