I was diagnosed one year ago and still have headaches on a daily basis. This doesn't concern my rheumatologist but, it certainly does me! I felt good after tapering to 10 mg. But below that the muscles and head rebelled. The doctor dismissed this as a normal part of tapering. I went down to a half mg last week and within two days, had a horrendous headache and barely could get of the couch. I called doctor and he put me back to 10mg. Staying I'd feel better quickly. Muscle pain better, yes. Headaches are not gone. I see him tomorrow but, this causes me anxiety; What he is telling me is normal, isn't consistent with what I've read.
I'd really like to hear what others are experiencing.
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Blurry62
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It’s too soon Blurry62 and potentially dangerous. This disease takes longer than a year to resolve and you really need to keep on top of the inflammation. You need a doctor who gets this! I would stay at 10 mgs and even more, if need be.
If you are on the correct dose of steroids you shouldn’t be getting headaches, I think your doctor is wrong to say it is ‘normal”. No it’s not - occasionally maybe, but certainly not permanently .
Hi, I also suffered with continual headaches for about 3 months. They were nothing like the migraines I used to get. Now I get maybe 1 or 2 a week. My doctors were not concerned either. I would just take pain killers so I could at least get some sleep. I guess it depends on how severe the pain is. I now worry about blurred vision. If I try and concentrate it gets worse. I saw the ophthalmologist yesterday and after the examination we put it down to prednisolone (like everything else they can't explain).
This sounds exactly like my experience, but after reading all the post here, I don't think we should accept this situation. Headaches are heralding bad news for us, and providing a tap on shoulder that says pay attention. . . My eyes are unhappy also. They have been unhappy from the start of GCA. I also experience flashing and a large floater in one eye. It's all being watched by the eye doctor who says the blood flow is good. Like you, I feel concerned about these visual changes. I will tell you that things didn't clear for me when I tapered to half a mg. Tablet. So I'm not sure that inflammation isn't the culprit.
Nothing to add to SJ and DLs comments - a common side effect of pred CAN be headache, but in that case it would tend to be worse at higher doses. If it is better at a higher dose it suggests it is due to inflammation of some sort - and the most likely answer, especially at this stage, would be continuing GCA. So quite why your rheumy is so adamant it can't be defeats me.
I see your reasoning and agree. I'm going to see him today. I am convinced I need more than 12 mg and feel anxiety about talking to him about it. I have this fear that he won't give it to me our hear me. (Which tells me I need a new doctor unless something way out off the ordinary happens in that office today.)
He gave me 15 mg for one month, one mg taper per month for three months...then we will revisit it. He is also working on a referral for me. He admitted that he needs help. I respect him for that. What an exhausting process this is people. Thank you for all your input.
So sorry to hear your problems - I have GCA diagnosed two and a half years ago now, and still get quite headachy when I overdo things and am tired. But taking a couple of paracetamol and resting does the trick, but you do seem to have tapered your steroids pretty quickly and it is more than possible you are too low, everyone is so different but at your stage I was on 16mg. I think one of the tips is that if when you take paracetamol if your headache doesn't go then you are probably too low on your steroid dose. Have you looked at Dorset Lady's steroid tapering schedule, if not do it is really useful - also a lot of Rheumatologist keep their patients on 10mg for quite a few months before starting a very slow taper. But definitely go back to your doctor.
Thank you for replying. I did look at Dorset lays document. I'm planning to ask for that type of schedule today at my appointment. I don't have much hope out will be received well though. I'm in the USA.... It's the medication you speak of like Tylenol? Over the counter meds? They don't help me at this point. But I do know I'd get steroid headaches from time to time when on higher pred doses but, they disappeared at 10 mg. And I felt really good. Below that, my whole body hit the crapper. I'd tell the doctor I want doing well with the taper and he'd add some steroid back in for two weeks then restart the taper. We did this three times and now, here I am.
I was diagnosed with GCA and PMR in July 2016. I started at 60 mg pred per day. I've now been on 10 mg per day for two months and will continue until the end of February when I next see my rheumy. I'm no expert but to me your tapering seems to have been far too quick. Your doctor should be more concerned that you are getting headaches given the nasty possible effects of GCA.
I'm astonished and flummoxed by how quickly I've been tapered of the medication. Your tapering time frame is consistent with everything I've read and heard from members of this community. Thanks for sharing. Heading for doc appointment today to fight for my health and life. :/
I was. He suggested I see someone for my headaches! I grabbed my head calmly and said ", this is gca, THIS is gca. It feels only slightly less than the head aches a year ago." Finally, he said he'd work on a referral to someone with more experience. He said he needed help treating me. I'm on 15 mg now and a one mg taper per month for three months. I know that I get some headaches from prednisone, too. The first day and a half though, I was headache free and my body feels so much better. It's such a mish-mosh of symptoms to unravel.
Well done for standing up to him. I hope the person he refers you to is more helpful and sympathetic. 'Mish-mash of symptoms', yes I agree - it makes it so difficult to explain to other people...
Hi I similarly diagnosed GCA/PMR July 2017 on 60mg and currently on 10mg had 2 slight relapses. Your taper has been very quick good luck stand your ground eyes too precious. Really difficult with all these Rheumys and their varying ideas best advice I have ever had is from this forum and it's great members helped me so much.
I saw the doctor yesterday and told him about everything I've learned about tapering schedules. His response was "oh my ____! I think you'd regret that!!!" By the time the visit wad over he said he needed some fresh eyes on my case and said he would be working on a referral to someone more experienced with gca. He also told me my desire to be pain free was unrealistic.
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