Symptom length

[People1]

I was wondering how long it takes to get the inflammation of GCA under control before the headaches, jaw pain, and fatigue go away? Anyone continue to have these symptoms for months?

[Mikb]

I'm not one of the experts, but I have had GCA since May 2017. I was started at 80 mgs of prednisone even though blood markers were okay, but they suspected it and there was eye involvement. The biopsy confirmed it. With me the headaches went away instantly. My jaw wasn't sore, but even to this day, it gets tired chewing. Last February I did have a short period where I couldn't seem to open my jaw more than an inch. Doctor raised my pred for a short time and it was fine after that. I definitely had fatigue, but I put that down to the prednisone not allowing me more than a few hours of sleep per night. As I decreased the dose, the fatigue lessened. I am now at 4 mgs and the fatigue has returned though I am getting more sleep. Not sure if it is the still hot weather or the adrenal glands trying to kick in. If you still have headaches, you should talk to your doctor.

[People1 in reply to Mikb]

Thanks so much. The severe and excruciating headache pain subsided after two days on 60 mg prednisone, but once that lifted I became more aware of the pressure at temples and jaws. Did you ever have any issues like this?

[Mikb in reply to People1]

No. I don't think I did.

[People1 in reply to Mikb]

Thank you for your feedback. It is so interesting to me how people can have diverse symptoms with the same diagnosis. Thank you so much for your kind assistance!

[SnazzyD in reply to People1]

I’d say the same. My pain went within 2 hours of 60mg but once that was gone I was more aware of other symptoms that were previously drowned out. In the first month or two, if I over did it doing very little I was aware of a pulsing and tenderness on pressing in my temple and pressure around. The biopsy wound didn’t help mind you. My jaw soon became weak from muscle atrophy from Pred but it felt very different from the claudication pre-Pred and has improved progressively with reducing doses.

[Telian]

You don't say what dose you're on or how long you've been on pred? As you get lower those symptoms will improve, but only gradually - it takes time and you cannot rush it unfortunately.

When it's GCA the symptoms should go immediately once on Pred. When I did my first reduction, after 2 weeks on 50mg to 40mg, the symptoms returned, not as bad but definitely there. I was suffering withdrawal symptoms, which are the same as the illness. You have to get to know the difference between a withdrawal and a flare - withdrawals come on the same day as the reduction but subside after a couple of days to a week - flares take longer to come on and will worsen, no pain killers will help. The rule then is to go back to the previous dose you were symptom free on and stay there until symptoms have completely settled...and of course let your GP/Rheumie know as they need to be able to manage and advise you correctly. Don't worry about bloods not being elevated symptoms mean more and should be listened to.

You can always come back, plenty of advice on here but take it has a guide only as we're all different and what works for one doesn't another. ATB

[People1 in reply to Telian]

Hi Telian, I have been on 60 mg for a little over a week now. The worst of the headaches are gone but the temple pressure is still there. I am wondering if it is related to the issues with jaws actually (mine are pretty sore and stiff when chewing) and perhaps muscular in nature or a side effect of prednisone.

[Telian in reply to People1]

Hi People1, you need a while longer on that dose, at least two weeks if not longer until symptoms have gone, only then would you be ready for a taper. If the symptoms remain you are not on a high enough dose for the inflammation. Jaw stiffness particularly, when chewing, are classic GCA symptoms. I too had the jaw stiffness and was checked out by the Maxofillial dept but had no jaw misalignment.

It's too early to wonder if you're suffering withdrawal symptoms from pred as you've haven't found your optimum level yet. Once you've reached it, and start your first taper, only then you will begin to know how/if you are reacting. I was told it was important to know the difference between a flare and withdrawals. Withdrawals come on the same day as you reduce and will be painful - similar to the GCA - it will last for a couple of days maybe a week - I take paracetamol (tylenol, I think, if you're in the US) which doesn't take the pain off but deadens it - symptoms should then start to subside. A flare comes on after a few days of tapering and gradually worsens and doesn't respond to any pain killers. No painkillers ease GCA symptoms. Rule of thumb at this stage is to go back to the dose you were last symptom free on and and stay there until they go. Always contact your Rheumie or GP to enable them to treat you effectively. This is where the individuality comes in and you have to do what's right for you. There isn't a one size fits all remedy. Listen to your body, remember symptoms mean more that blood results. Do you have visual disturbance at all, if not that's good but if you do then it has to be treated as a medical emergency. ATB.

[People1 in reply to Telian]

Thank you Telian! Such helpful information and I am so grateful!

[PMRpro Ambassador]

Continuing pain and symptoms are generally signs that the pred dose is not high enough. The pain should improve within a couple of days although it may take longer to get to a very low level, some people are never totally pain-free. A return of/increase in symptoms while reducing is an indicator you have reduced too far for now.

[People1]

Thank you! I will check with my doctor about raising the dose.