Hello, I've had GCA and PMR for a year. I'm on Actemra and prednisone. I was reducing and got down to 12.5mg three months ago. But the symptoms came roaring back and I kept having to increase the dose. I've been on 35mg for one month. I tried to reduce by 2.5mg but the unbearable headache came back.
My rheumatologist says the prednisone is way too high and she thinks I may have some other medical condition due to my ongoing symptoms. She thinks I should be way lower due to the Actemra. I tried to explain that Actemra doesn't work for everyone the same way. She wants me to see a neurologist to check for other diseases.
I'd love your advice on what to do. Is this on the spectrum of normal for GCA and PMR? Should I try to reduce by only 1mg per month?
Thanks in advance. I am grateful for you all.
Pottery Lady
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As is often the case, we are all too often advised to taper too rapidly. These are significant, systemic diseases that can last for years ( me getting on for 8). The purpose of tapering is to get to the lowest possible dose that provides relief of symptoms. Obviously it is dangerous to under-dose with GCA and headaches can be the red flag. You are right that Actemra does not work well for everyone. When tapering, the Pred you need to allow enough time between drops to assess the situation. 4 weeks seems to be about right. Drops should not be higher than 10% of your dose. It is good to have tests for co- morbidities as they do happen. Have you read about tapering in FAQs? DorsetLady has explained it very well. I have tried lower drops with some success. I also see a well equipped optician to monitor the back of my eye and various other possibilities such as glaucoma. He keeps my slides for future reference. We all respond differently to these diseases and their treatments. I would say you were in the realms of normality in your responses. External factors, such as stress certainly have a negative impact, as does rushing you off Pred. DorsetLady and PMRPro will add their expertise no doubt, in a few hours.
Thank you so much. Your words are a comfort to me. So, have you had GCA for 8 years? What is your current dose, if you don't mind me asking? And yes, I've studied the slow taper methods. I'm hoping I can start tapering again. 10% would be 3.5mg and I was unable to do 2.5mg because the severe head pain came roaring back. Yikes.
Having to go back up to 35mg is quite a big hike from 12.5mg - was that under medical advice -and what symptoms did you have besides the headache?
If you flared again when only trying a reduction of 2.5mg from 35mg (which should be achievable with or with Actemra) then you maybe do need further investigation.
Whilst waiting for that, you could try using a slower taper as suggest by SheffieldJane - see either of these -
Thank you Dorset Lady, was hoping to hear from you. The headache was the worst symptom. That kind of headache where you cannot function or sleep, like the top of my head was going to explode. It came on around 4am and I'd have to take steroids to tamp it down. I tried tylenol but only steroids helped. Temples super swollen, and PMR symptoms of hips inflamed, pain with walking, but not as severe as the head. My rheumatologist had told me I may have to go up to 30mg, but 35mg seemed to be the magic number.
I am scheduling a neurology appointment, but have to wait 4 months for the appointment. I had an MRI and an MRA which showed "Minimal periventricular and subcortical white matter T2 hyperintensity." and also "Minimal chronic small vessel ischemic change." but everything else was normal.
I’ve got a few questions as usual. What sort of headache is it? When did the headache kick in after you reduced and how long did you leave it before you increased? Did you go up to 35mg in steps or in one go and if it was in steps, what were they? I was quite sensitive to reductions in terms of withdrawal even at those higher doses and headache was one of them, along with feeling fluey and achey. I usually had a day or 3 mostly in bed. 2.5mg from 12.5mg can be a big jump for some and that is 20%. 10% is often quoted as a maximum rule of thumb. However, you have only been on this trail for a year so relapse is a concern. Why did you go up to 35mg specifically, was that where you finally felt comfortable?
Hi SnazzyD, thank you for responding. The headache was the top and back of my head feeling like it was going to explode. The kind where you can't function, can't sleep, because the pain is so severe. It was my head, jaw and hips. I went up to 35 in steps. 12.5mg was the lowest dose where I felt fine. I had then reduced to 9mg, but that was too low and had to go back up. So I went from 9 to 15 to 17.5 to 20 to 25 to 30 to 35 when the symptoms finally got better. I stayed at 35mg for a month. Last week when I tried to reduce from 35mg to 32.5mg, I was fine for 2 days but the headache came roaring back so I went back up to 35mg again. I'm wondering if the Actemra is even helping me and if not, maybe I should stop that so I'm not as immune compromised by taking both Actemra and steroids.
30+mg is definitely much too high if you are on Actemra and what you have is definitely GCA. 8-10mg would be usual, maybe a bit more for the exceptional patient, Half of patients will be in that situation.
How was your GCA diagnosed? What symptoms have returned? Do normal painkillers help?
One Indian lady had been diagnosed with GCA but didn't respond as expected to Actemra and her doctors (no idea where) eventually did a cytokine panel and found 2 other IL cytokines were raised. Actemra only works for IL-6 so it wasn't controlling the inflammation due to these other cytokines.
I think your rheumy may well be absolutely correct in her suspicions which is why I ask about your symptoms - there are several conditions that can mimic GCA but are not usually thought of in that connection. There is the lady I described above, another was initially diagnosed with PMR but had head and tongue symptoms which needed a lot of pred and her doctors wouldn't give enough to control the symptoms. In the end she visited Sarah Mackie in Leeds who recognised her complaint of early nighttime back pain - 2am or so. That is far too early to be typical of PMR and an MRI showed ankylosing spondylitis - the changes in the neck were obstructing blood flow to the head and that caused the same sort of symptoms as GCA. Other arthritic changes will do the same.
Hi PMRpro, please read my responses above too. I was diagnosed by my inflammatory blood markers and my symptoms. I had a temporal biopsy, but I had already been on steroids so it didn't show anything.
I'm wondering if I should stop the Actemra if I need such high steroid amounts. What amount of prednisone would be "normal" if I wasn't on Actemra? Would the 35mg be normal without Actemra?
I'm getting more bloodwork today. Rheumatologist is testing for myositis. I'm planning on seeing a neurologist but can't get in until October.
I don't have any back pain. My symptoms seem to be exactly GCA and PMR, to me anyway.
Hi, it would not hurt to go to a neurologist so they could do an MRI to rule out anything else going on. Maybe have it with contrast, gives more information.
Hi Plains, I had an MRI and MRA with contrast and it didn't seem to tell my rheumatologist anything, but perhaps a neurologist might see something in it.
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