Hello, I posted last month about some head pain. After seeing a neurologist, who could not explain what may be going on to my Rhumy thinking it’s not a GCA flair, my question is. If I just let this slight discomfort in my head go, do nothing and it is GCA is there any risk? It is a very dull feeling not real pain. I am at a loss what to do, don’t want to up my prednisone if I don’t have too.
I wanted an MRI with contrast but neurologist said since I had an MRI ( without contrast) this year, insurance would not pay for it. It still feels like something is going on in my head. I know my body. I am almost at the point of… well I will just wait and see what happens to me. Very frustrating. Thank you for listening 🌼
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I had heard that too, that is why I did not think it was GCA. After reading the responses to my question, other reported having GCA and losing their sight with very slight pain.
As piglette says, GCA head pain is different any other- and you know that from last July - is this pain similar or not?
When you saw neurologist, what tests did he carry out - and do you mean he, or your rheumy doesn’t think it’s a GCA flare?
You say in this post -and previous one - that you don’t want to up your Pred, but it may be the only way to find out if it is a flare. Either that or try painkillers for a few days to see if they help…but obviously don’t trial both things at same time.
Whatever the results, you may then have a bit more information to pass to your rheumy,
Maybe have a look at this post which give advice on a flare and up your current dose for a week.
If it doesn’t make an iota of difference it may not be GCA..but I don’t think you have the option of doing nothing - you know the risks of untreated GCA.
Your first question: last July, the pain was very similar but I was starting to get blurry vision. I went to the hospital and they gave me a large dose of steroids. The next day I felt better but my doctor continued me on high dosage of prednisone suspecting GCA, then reducing. Went to the eye doctor and he said my blurry vision could have been for dry eyes, which I had been treated for before. The neurologist did no test except banging on my knees and arms for reflex.
Before my first visit with the neurologist, my GP had ordered an MRI because I complained about my head dull pain. the MRI showed a possible mini stroke, and my GP told me to see a neurologist. The neurologist looked at the MRI image and did not think I had a stroke at all, he said it was a space.
I have been back to him twice and at the most recent visit he referred me to a pain management doctor who could do an injection in my head. Crazy??? Right. It’s not terrible pain and very hard to describe. I will not be going back to him or see the pain doctor he referred me to.
Second question: My Rheumy did not think it was a GCA flair but upped my prednisone to 10MG for a week telling me to let him know if the pain/ feelings went away. It did go away so he told me to reduce to 5 for a week and so on. I slowly reduced back down to 3 mg and was okay for a while , now it started again.
I know prednisone makes everythibg feel better, if it’s GCA or something else. I guess I just want to be sure they know what it and not something other than GCA. So I just took another 5mg for total of 8 today. I will do 8 mg for a few days to see if it goes away. I will be letting my rheumatologist know what I am doing on Monday. I leave for vacation to Ireland in the beginning of August so I want to get this under control.
I was interesting and scary too to hear that others who have GCA reported dull pain/ feeling with little symptoms, I will
Mention this to my Rhumy too. Do you think upping to 8 is enough? It’s the weekend so I can’t ask him.
Blurry vision is always a bit difficult to diagnosis, worst case seen an be GCA, but can also be dry eye (as suggested) or even a side effect of Pred itself.
Must admit the Neurologist sounds one to avoid, not particularly helpful.
As the rheumy increased to 10mg last time, it might be worth trying that dose again… for maybe a little longer than a week. You can take that dose for up to 14 days without impacting the return to a lower dose…but then maybe back down to 5mg rather than 3mg. But you do need to speak to rheumy about getting things sorted.
It doesn't really - I have no idea what makes doctors think that and perpetuate the myth. It makes most inflammatory things better but it doesn't make depression which is closely allied to inflammation better and sometimes makes it worse.
I think what I read in your story there is that 3mg isn't quite enough to manage all the inflammation being created daily - and over time it builds up enough to cause symptoms. We always say, drop back to the dose ABOVE where the flare in symptoms happened. If a dose was even a tiny bit too low, that won't have changed in the meantime.
I developed secondary adrenal insufficiency because of my prednisone use during my PMR. When I go into an adrenal crisis I get a headache. It's a really really bad headache with neck pain and nausea not at all what you're describing. But I'm wondering if your dull headache is caused by your body adjusting to the lower dose of steroids.
Did you ask the Rheumy why they thought it wasn’t GCA? It’s always good to know how they are thinking. If it is GCA there are big risks doing nothing. A decent increase in Pred will tell you if it is. The main basis of my diagnosis was the way my symptoms (fairly classic) responded to Pred because bloods and biopsy were normal.
no he did not say but he did up my prednisone to be sure then backed me down. They did go away but now back again. My blood tests are good and I am also on Actemra infusions once a month.
Even with Actemra I have had a few hiccups while tapering - it can take quite a time to really get all the inflammation under control and, in fact, sometimes it doesn't combat it all. I had a wobble getting to 6mg and had to go back to 9mg and them taper down agai a coule of months later. Now at 5mg there are other constraints - adrenal function ahoy but the symptoms can be very similar to the reason you are on the pred in the first place.
If you are on Actemra, then that is a different world. Because of the way Actemra works the usual blood markers are meaningless, the ESR/sed rate and CRP fall to low levels but do NOT mean that the GCA is controlled in any way except the inflammation is removed, it is the way the Actemra works. The disease itself can still be active and since there are at least 3 different mechanisms for the inflammation in GCA that may be causing problems as only the one involving IL-6 is dealt with by the Actemra - biologic drugs are VERY specific. In about half of patients these other mechanisms still require some pred to manage the inflammation and needing a low dose of pred continues. In the clinical trials a dose of 8-10mg was very common but it can be lower. But that soesn;t mean the doctor can say "it can't be the GCA" - yes it can and it will need some pred.
I have GCA and have never had much pain. A year ago tomorrow I lost most of the sight in my left eye. I had a slight dull ache across my forehead for 2 or 3 days and both my eyes were tender when I moved them. The left eye and left temple were uncomfortable but not really painful but misty blobs had appeared , which I thought was the retina detaching, and I went to A&E at the eye hospital. Fortunately, they suspected GCA and gave me steroids immediately, saving the sight in my right eye and a little bit in the left.
I'm always conscious that the symptoms I had leading up to this were so slight and minimal, it's hard to know what is important and what is not. However, personally, I would increase the steroids if I had any hint that it could be GCA.
I am sorry to hear about your eyesight. It’s scary to hear your story. I did up my prednisone today to 8 mg. I will see how I feel tomorrow and up it higher if necessary. I am on Actemra infusions once a month. Do you take Actemra injections too?
Hi, thank you. It was very shocking, happened very quickly and I'd never heard of GCA until it half blinded me! I'm glad you've done that and I hope it keeps you safe.
I just take Prednisolone, 5mg a day and seem quite stable at the moment.
Such a worry isn’t it - my head doesn’t feel right either but the dose gets put up just in case and one rheumatologist told me that can cause headaches/sensations too. The risk is too serious to ignore however so keep reporting concerns
I don't know quite how the insurance works in your region. Could you speak to an adviser at your insurance? Not for a medical opinion, obviously, but they may have a different protocol for certain medical conditions.
Oh wow,I have exactly the same problem.Your story is so similar to mine,I lov to chat about it..I get headache for 4 5 days and my rhuematoligist thinks it's not Gca but what could it be,never had it before Gca
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Can you describe your headache? When I was first was diagnosed I had a sensation that I had one of those early twin tub washing machines in my head making that kind of heavy duty swirling movement. I thought I was going insane. Half an hour after I took my first dose it had gone, I have had odd headaches but never anything like that.
I am wondering if there isn't a link here with the Hypothalamus/Pituitary to the Adrenals that can play into some headaches - the famous HPA Axis that is key in trauma/stress work (Peter Levine et al). Just a thought.
it is very hard to describe. I think this all started back in 2020. My condition was undiagnosed, I had pain all over my body and could barely walk. I also had a severe headache for days. Thank god I was put on a high dose of prednisone by another doctor. The headache and body pain got much better. Then I developed on the same side as now, the right side of my head a heart beat sound, it drove me nuts. My GP said it was tendinitis. I decided to go to an ear, nose and throat DR. He said it absolutely was not tendinitis. He gave me two sprays and told me to increase my prednisone. It went away. Ever since that happened any discomfort I have is always on that side. I do not hear a heart beat but I just feel a little fuzzy feeling and pressure, sometimes my ear would feel a very slight pain. I have tried using the spray again, taking antihistamines in case it was allergies and nothing worked except prednisone. I was able to get to 1mg of prednisone since I am on infusions of Actemra. I have no body pain and very happy that I have returned to a very active life. It’s now my head. The feeling went away for a short while only to return. I can’t help feeling that something else may be going on and it’s very possible it may not be GCA but something else. I just want to know. Sorry to be so long winded, but wanted you to know how I got here and how the head stuff started. I too think about my adrenaline glands ect but my doctors refused to check levels even when I was at 1mg. I also have thyroid issues.
I was diagnosed with GCA in 2019 after my subclavian stent occluded a week after it was put in. That plus a lot of other problems I had. I live in Texas and have a great rheumatologist. I have been on Actemra since 2020 and because I still suffer from occasional head pain, I will be on it indefinitely. I would love to talk to you and explain What I have gone through.
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