I finally tapered off steroids April 2023 after 18 months. Over the last few weeks my headaches have returned daily- bilateral temples. My head just feels woozy and ‘full’ . Hard to describe. Scalp ‘burns’ but is not sensitive to touch. So fatigued I just can’t do much of anything. Went to rheum and she put me back on prednisone 20mg to taper weekly 2.5mg. I haven’t started it yet. I’m already on methotrexate and Abatacept. I guess I am worried about effects of long term steroids vs GCA. Does anyone else worry about this?
does it sound like a relapse?
My crp has been normal throughout this whole process so I can’t follow that … I did have a positive biopsy. In April 2023 I had a CT angiogram which showed improvement. Does anyone else have residual headaches and not have it be a relapse. I really don’t want to get back on steroids unless I am sure this is a relapse. They’ve played havoc with my body.
Jackie
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Jsaoughs
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Certainly sounds like it to me….and for most people GCA lasts longer than 18 months… 4 years is much nearer the mark.
You’ll only know for sure if it is a relapse by taking the steroids and if they work … and in respect of GCA, 20mg is not a big dose, and with the tapering advice you have been given it certainly won’t affect you as the starting dose of 85mg did.
My greatest worry in your situation would be the possibility of a return of full blown GCA rather than the side affect of steroids… but then I know the damage untreated GCA can do…
Thank you for your response I really appreciate it. I respect you all on this site for your knowledge and advice. I wondered whether a relapse could cause blindness. I couldn’t find anything in the literature about it. Have you heard of people losing vision during a relapse? I’m not sure why I want to know this information. After reading you and PMRpro response I decided to go ahead and restart steroids. I guess I am just curious
I don't know - it all depends how active the underlying disease activity is and you cannot know that or what the status is of the opthalmic artery which is the one that matters. But I doubt this is a relapse in that the underlying disease activity had never gone away. 3 or 4 months is a very common time for the inflammation to build up far enough to cause symptoms again - the dripping tap metaphor.
I would doubt it after such a short time, but as PMRpro rightly says it depends what artery is affected , and that’s not easy to confirm especially if it’s the ophthalmic artery, and that’s almost impossible to know until it’s too late… as I well know.
If it is only 18 months since you were diagnosed with GCA via a positive biopsy then the underlying autoimmune cause of the GCA is almost certainly still active, Four to 5 years is a much more common duration and yes, it does sound like a relapse.
Neither methotrexate nor abatacept are likely to do a lot for GCA - the primary cause of the inflammation in GCA is due to IL-6, not T-cells although T-cells do have a minor role. Abatacept is a T-cell inhibitor and will deal with that minor part of GCA but has absolutely no effect on the IL-6 component. I would be very interested to know why your doctor chose abatacept rather than Actemra for the GCA which does have a very good result in GCA.
Pred, on the other hand, is a very powerful antiinflammatory drug and works on ALL the potential underlying causes of the inflammation and that is why it is universally used in GCA to prevent the ultimate adverse offect of GCA which is total and irreversible loss of vision. When it is gone, it is gone. No other drugs have been proven to have an equal protective effect and that is why it is always the first line choice and other drugs come second.
I have been on pred for over 14 years, a lot of the time at between 10 and 20mg and I have no long term adverse effects we can identify. I only have PMR but a form that is persistent and difficult to manage. There was no alternative to pred - without it I was in constant pain and quite disabled, I have no sign of diabetes, my bone density is normal and has been since diagnosis even without bisohosphonates, I gained weight with PMR and during the short time I was on methylprednisolone, I lost most of the weight when I switched to prednisone and adopted a low carb way of eating. I did have bad bruising on my shins for a time - but I also take anticoagulants for atrial fibrillation which was caused by the PMR (not the pred).
Most of the adverse effects of pred can be managed when you know how - and we can help with that. But personally, I can't think of anything pred does to us that is worse than what GCA can do - and there are a few on the forum who HAVE lost vision in one eye and we have family members who represent parents who have lost all the sight to GCA - it does happen.
Up to about 20% of patients with GCA/PMR have normal range blood markers. They are not reliable, symptoms always trump lab results. The markers are not specific to GCA and PMR, other things can make them go up too and being on medication adds to the unreliability.
Thank you. I’ll restart steroids. My gut tells me it is a relapse and I guess I’ve just been in denial. I’m fairly miserable right now with the headaches. Thanks to you and Dorsett Lady for bringing me back to reality.
I have a history of diverticulitis so rheum didn’t want to use actemra- although now they are having me see a GI doctor to evaluate my situation. I have to admit this drug scares me a bit.
I do understand her reasoning - but there is absolutely no point using a biologic that doesn't do the job that is required. Biologics are extremely specific - and unless she is using the RIGHT biologic, you will need a lot more pred, She is doing you no favours at all. The bowel perforation problem is very rare although it is possible the diverticulitis may worsen.
To be honest - I don't know 20mg pred and reducing the dose at that speed will do much.
I am concerned because a) It is a mere 18 months from diagnosis b) Steroid sparers aren’t always enough and c) The nature of your symptoms, the funny head and the burning. If you are worried about long term Pred, take the 20mg and possibly nip it in the bud to avoid having to go up higher. A trial of 20mg may give you more information on the nature of this. The rheumatologist, given their fear of steroids, is even prepared to give you more.
Personally, once my symptoms were under control and I was on enough Pred I didn’t have any head pains after the early weeks. Normal headaches were a feature of withdrawal for a few days but not that burning or groggy feel.
So the burning scalp is part of GCA? My rheum keeps asking me is my scalp tender- it’s not - just a deep burn, but I can touch it without issue.
They also ask about jaw claudication. I feel a heaviness to my jaw- top teeth mainly- but not with chewing.
All I can tell them is how I feel- I get the impression that because I am not ‘textbook’ with my symptoms they are confused. Now they want me to go to neurology to rule out any other causes of headaches- just in case.
They know I have GCA- obviously, with the positive biopsy and I did improve on high dose steroids. The rheum doc said she doesn’t want to keep giving me steroids if there
Could be something else going on in addition to the GCA. Do others have these symptoms like mine- burning scalp and heaviness to jaw?
A deep burn is how I would describe my GCA pain rather than a headache. When they were prodding my temples I wouldn’t have called that tender, just weird verging on tender. What was uncomfortable also was my pillow that felt like bricks and my glasses feeling like an irritant. When it really got going, even cold wind on my face was not pleasant. Heaviness of the jaw is also possible and some people have said the side of their face or around the eye felt odd and congested. There are variations on a theme.
Don’t forget the doctors are unlikely to have ever experienced GCA and words are all they have which of course mean different things to different people. I dare say if they had deep burning they would call it tender!
good point. I also experience discomfort when I lay the side of my head on my pillow and with my glasses. And I get pins and needles feeling on my face at times and ear fullness.
Thank you all for helping me clarify my symptoms. It’s nice to know others have similar symptoms. Sometimes I feel like I am a bit crazy with what I am feeling in my head.
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