Sorry to post again, but I am in a very bad way. I am on the 40mg dose of prednisone, and the headaches are getting worse.
The pain in my jaws is so bad, I can barely stand it.
Is it common to get worse after starting prednisone? I took 60mg for three days, now down to 40mg for three, then 20mg for three.
I've never had headaches like this in 40 years of migraines.
It may be sensible to go back to 60mg of steroids of that worked??
It didn't work, I am just getting worse. I didn't feel any change on 60mg but feeling severe symptoms today.
I am seeing flashing lights,,/blades in my perarephreal vision. The pain in my face is incredible.
Sounds like an emergency call to your doc is in order to discuss GCA or an alternative...or a trip to the emergency room asap.
My ER just treats me for migraines and says they dint know.I'm out if money to even go.
I suppose what your are describing are possible symptoms of retinal migraine, which is probably what they think.
If this is GCA you are being wrongly advised as regards your Pred dose. In your shoes I would go to the emergency department and seek competent advice, your eyesight could be at risk. Pred is the only drug currently that will control the inflammation and you may need a lot more.
As others have advised, you have to attend ER. If it is GCA, then you need to return to at least 60mg and for longer than 3 days… and if it’s not, then you need to find out what it is.
Am emergency opinion is needed. If it is GCA or Large Vessel disease , even if 60mg was going to be enough, you didn’t have enough days on it to make a difference to what seems to be a bit of an acute situation. Some people need 100mg IV. It may be indicative that even if you didn’t find magical relief at 60mg, it appears to be getting worse as you reduce.
However, your history of the eye tumour, surgery and other interventions may need looking at again. Perhaps an up to date scan is needed or an opinion from a neurologist or opthalmologist rather than a rheumatologist.
A trip to ER is needed I think and if possible, take backup. Perhaps, the dialogue needs to be around finding out from scratch rather than being locking into an argument about GCA.
You urgently need medical input - if there was any improvement at 60mg but deterioration at a lower dose that may be confirmation it is GCA and also that 60mg was barely enough. 80mg and even 100mg is used in severe cases and one approach is a 3 day pulse therapy using 1000mg per day. But you need medical care for that. And given your system - at the ER.
Good advice, based on my experience. I was having the same excruciating headaches and jaw pain and my rheumy put me in the hospital immediately to save my eyesight. Had the 1000mg/day for three days (pulse therapy) and it solved the issue. I've been fine ever since.
So how do they know this isn't just really bad tension headaches in your face. Since my ESR and CRP are all normal, they are going to assume it's GCA or PRM. Not where I live.
That is the issue. How in the world do they know what it really is, since I am not getting better in the prednisone?
good luck Harrison boy. Get to the ER!
please let us know how you are, you need emergency help now
Just an update. I was seen by a Spinal leak specialist/pain specialist yesterday .He is concerned this is coming from my spinal cord or a leak in my spine.
He did not address any concerns about GCA. This isn't his expertise. I have no idea what this is, but my problem is that I live in a very rural area where it is almost impossible to get any real answers. I question if this is GCA, just because all my readings are normal, and I have so many other issues going on.
I've just never had pain in my face, neck and head like this before.
So sorry to keep posting, but I have never.felt this bad in my life.
So what did they do about it? Don't apologize, we get it..
Just give me pain shots that last a few hours, send me home.
Maybe call Northwestern or Rush up in Chicago? Keep trying, please. And keep calling Mayo and set an appt regardless..that is all I can think of right now
Could you say more about why your Dr is concerned about a leak in your spine , what was his thinking? Are the symptoms you are experiencing typical for this diagnosis? You mentioned a leak before, did you have any tests to confirm this?Did you have significant eye / brain surgery for your tumour behind the eye leading to loss of binocular vision? Was this the start of all your subsequent pain?
I had a couple of falls in 2018 and 2019. The severe symptoms started . I was also removing MOLD from a building.The tumor was behind my right eye and drilled a hole in my skull. They removed a lot of the bones in my sinuses to insure it didn't come back.
I had 2 DSM/CT Myelogram's to try and find a leak. They found 12 bulging disc's, 6 spurs in my spinal cord and a cyst that is suspicious of a leak. Unfortunately, if it is a leak, it is extremely difficult to find and fix. I do have many of the symptoms of a leak, but I truly don't know.
The Mayo clinic has a new scanner that is finding these leaks, but it is almost impossible to get in.
I am so confused about what this really is. Sometimes I think I am just crazy.
Have your physician contact Mayo. That’s how I got into mayo quickly.
There is a form online. I went to Minnesota. They specialize in PMR and GCA.
I applied for a leak but was turned down. The specialist I saw this week said he would try to get me in for a leak review but it isn't promising he can get me in.
Why a spinal leak? Did you have a spinal tap, spinal anesthesia, or epidural. A spinal leak can cause a headache from hell but if you have not had the aforementioned procedures I cannot imagine what else would cause a leak. (Retired US nurse anesthetist here).
There might be other anatomical causes I don’t know about.
Please go back to the ER by ambulance please. About payment: apply for charity care asap. Don’t pay by credit card. Impossible to get out from under with that.
"Spontaneous CSF leaks can occur due to increased intracranial pressure (pressure in the head). This can happen to patients with hydrocephalus, a buildup of CSF in the skull. Spontaneous leaks may also occur without an identifiable cause."
hopkinsmedicine.org/health/....
Thanks Pro for that info. Good thing I am retired; my knowledge base is outdated.
Several of the doctors ibam seeing want me to go to Mayo, but it is almost impossible to get in. I was turned down already.
I don't know what this is, buy I sure can't go on like this very long.
I have several friends who have a CSF leak. Most never get help.
I had two major falls and have 12 bulging disc's, one is herniated but most of all 6 bone spurs sticking in my dura and a nerve root diverticulum. I feel better whenever laying down. When I amnup tge headaches are horrible.
But the new headaches I am having are in my face. It is like tye worlds worst tension throbbing headache in my temples and jaw.
It feels like I am clenching as hard as I can, but I'm not.
Please keep us updated and I really hope they can help and make you feel so much better
I started on 60 mg and after 4 weeks all pain except for Jaw claudication had gone but my rheumo put me up to 65mg .... he said it was essential to be pain free otherwise the inflammation was still active and could keep on causing damage to the blood vessels.
After 2 weeks at 65mg all pain went, and I started slowly tapering to zero....it took me exactly one year.
I started using Actemra injections after being on Pred for 4 months, weekly for 6 months then fortnightly for a year .
I stopped EVERYTHING 8 weeks ago and still have my fingers crossed. The Pred year was diabolical. I lost most of my hair, had total psychotic episodes and was incoherent for most of the time.
Now my hair is extra thick and long, and I am perfectly normal in most other ways. I will never forget those 2 horrific years though and I watch what I eat and things that I do, like a hawk.
I have been to hell and back and never want to go there again.
I only have 3 more days of prednisone and it's over.Doubt I this is going to work. I feel worse everyday that goes by.
Snazzy is right - diagnosis needs to be started from scratch - and quickly! I know only too well the hell of financial hardship, and am still in debt to friends and family regarding this. But your health comes first.
I literally have no options.
Broke and doctors are done.
Contact your local politicians ; they love to be seen as heros. Can you get on Medicaid?
Also GoFundMe on Facebook is used by a lot of people with medical debt.
I am going to have to try that.
Sounds like you're in trouble.I had to take 100mg to get my GCA under control.As others have said.Get some help.I would go back to 60mg first but you may need more.
find a friend in lr asap and couch surf while u go to med center
I was prescribed cocodymol when I started on my 40mg of steroids in November. I don't think steroids are painkillers you need something else.
Given your brain surgery and implant, and the lack of response to high doses of steroids, I think this forum is not the place to seek advice.
It really doesn't sound like GCA to me I'm afraid. You need to go to ER I feel and insist on telling them your full history. Good luck.
Don't be sorry for posting that's what this groups for so that we can support one another. Sounds like your Prednisone is being dropped fast too dramatically and your body hasn't got time to adjust. It needs to be slow and steady
I knowni probably sound crazy to everyone, but I have literally become almost homebound in the last few months.
It is amazing how fast this has progressed. Whatever it is.
GCA diagnosis in September 2017
Tapering steroids
Jaw locking while tapering for GCA 
Flying to USA newly diagnosed with GCA/PMR 
Newly diagnosed with PMR 
