Well, the ESR and CRP results from yesterday are in and are totally normal.
ESR 11 < 20mm/h
CRP 4.1 <8 mg/l
As I am sure many if you have experienced, this certainly will convince my doctors that I don't have either PMR or GCA.
And maybe there right. This just all may be in my imagination.
good morning ! As I’m sure others will be along shortly to say that PMR indeed is a peculiar illness and tests don’t always align with symptoms. My results have always been ‘normal ‘ or only slightly raised throughout my entire PMR journey over the past 12 years. I’ve just looked at your profile and you haven’t said anything about what your symptoms are ? My Rheumy went with try prednisolone and if it works then that seems to be PMR ( or maybe something akin to PMR in the vast AI spectrum ) Of course it could also be that whatever medication you are taking is working on your inflammatory markers- not that you don’t have PMR. Tell us more 
Seekingasolution: If you go to his profile and hit “posts”, you’ll find his initial post from a few days ago where he describes his symptoms in detail. He also says in the comments that he is on no medications currently.
Would be good for you to cut and paste some of that onto your profile, Harrisonboy, so others can easily access your condition and advise you. You must be so overwhelmed and discouraged! Like Seekingasolution and quite a few others my markers were never out of normal range with PMR, and a year later only CRP was slightly elevated when GCA showed up! 10 mg Prednisone was the determining factor for PMR-worked like magic in a few hours. My GCA was diagnosed by positive temporal biopsy.
Hoping you find a good, interested diagnostician, (Dallas, maybe?) answers to your intolerable symptoms and a good treatment plan.
I am planning on asking my GP for a steroid shot, or a course of pills to try. I am so desperate and honestly don't know how I can mange this without some relief. Bless you all for any prayers.
I was a director of a college and an engineer. This all started 4 1/2 years ago. I was remodeling a building for mold and started getting sick with a migraine. Three days before this, i fell off of a ladder. I went home, the next day it was still there and now, it was like I had the worst flu ever. The headache was different, every muscle in my face, neck, shoulders was in pain, along with migraine. I had to lay down in tye floor of my office for hours, because of the fatigue. Severe upper abdominal pain that radiates to my back. Low back pain and even the bottom of my feet are killing me. My right arm no longer moves when I walk. I have tremors, blurry and missing vision, intermittently. Whenni stand up to walk, i lose peripheral vision. Ive seen three ophthalmologist who say my eyes are fine. Nightsweats and chills. Extreme light sound sensitivity. I feel like a train has hit me when i wake up in the morning. As soon as i get up, the headaches start and i am so exhausted, i can barely function. I developed dystonia and parkinsonism. I have to eat thousands of calories a day, and I don't gain an ounce. I lost 51 lbs in 6 months, but finally gained some back. No matter how much I eat, it is like I have eaten in days. My blood sugar are normal. In fact, all my bloodwork is normal, with the exception of all my C3,C4, CH50 levels are high. The doctors can't figure out why, and tell me to go to Mayo.
They found a tumor behind my right eye and removed it. I got even worse.
A neurologist in Texas thinks I have a CSF leak in my spinal cord, but all of the testing can't find it. She advised me to go to Mayo to try and find it, but I was turned down. They went in my spinal cord 4 times and that is when I really got worse. I lost my job and I can barely function at home.
I have been in the ER 3 times in the last two months. They treat me for a migraine and send me home.
My current neurologist is at a loss. He gave me Botox for the dystonia, I my neck, face, back pain got worse. So did the headaches.
I don't know what to do. I have been on 77 different meds trying to find relief. I even had a brain stimulator put in and removed last year.
Er .. wow. That’s quite some story and way outside my scale of reference. I have found in the past with other medical issues that you have to keep going back and some day, a doctor with the right sphere of knowledge will get it and resolve it. But what to do right now ? I had to see 2 rheumies btw before my condition was determined. Is it possible to ask for a referral to a rheumatologist with a PMR specialisation ? As someone has said maybe a prescription of prednisolone will rule PMR in or out but I would have thought this was essential if you have GCA and not migraines. Next time someone treats you for a migraine, can you ask ‘ how do know it is not GCA?’ Certainly in the UK there is a lot of ignorance about the condition and it can take years to diagnose. In fact my friend who’d had it diagnosed me ! I’m hoping the PMR Pro will be along shortly to give you some advice too. What you are going through sounds horrendous
Thanks for your support and prayers. I am out of guesses.
Not surprised..again, please just demand a trial of Pred for 2 weeks to a month..nothing to lose, and then they can use it as a way to either rule out or confirm you have something that responds to steroids.
Hello, as far as Mayo g. I’ve been turned down before but was able to get a n appointment later. I’d suggest having your doctor reach out to Mayo for you.
Did it help going to Mayo? I have heard so many horror stories of people getting there and just being told it is fibromyalgia and being sent home.I am out of money and resources so can't afford for that to happen.
sues it did help. A referral is needed to see someone in Rheumatology and Endocrinology of which my GP did when I requested an appointment. I’ve heard only good stories from there. Hope you’re able yo get a solution to your poor health.
If you do ask your GP for pred, I’d suggest oral pred tablets (at least 15mg per day, for 7-10 days) as opposed to an injection.
I believe injections have a localized effect in one specific area (like I had in my knee). Worked great for my knee, but did not address the other symptoms I had throughout my body. Whereas 20mg of pred in oral tablets addressed my inflammation in 6 hours. I had what they sometimes refer to as a “miracle response” (which confirmed PMR). Hope you get similar relief. For some folks it takes a few days to “kick in”.
Thank you....
Depends on the type of injection. When used for a joint there is only a small amount of escape from the area but deep i.m. depot medrone injections release a steadily decreasing amount of pred from relatively high to low over a period of a few weeks, depending on the initial dose.
I had that ‘miracle response’ thing too. It was amazing ! And confirmed PMR. Just wish I could take that higher dose every day !
I agree as your doctor if he can give you a short course of prednisone to help you with your symptoms.
Just a thought, and I am NO kind of expert, but I notice you say you were doing something with a building 'for mold' when your symptoms first started. Were you using any kind of chemical that you could have ingested by breathing, or through skin contact? If so, it might pay to start a parallel line of enquiry into the effects of the chemicals, if any were involved. (Or into the effects of mold itself, perhaps?)
However, I don't want to spread alarm. Your description of the feverish chills and the face/headache does sound very like my own experience of the beginning of PMR, though in my case the headache (worse at night and awful in the mornings, easing up in the afternoons) gradually went away after about 4 months, being replaced by the traditional PMR hip- and shoulder girdle pains. I also have had migraine for many years, and found it hard to convince the docs I saw that this pain was nothing like migraine.
Keep exploring - there will be an answer out there! And as a doctor friend of mine advised, send emails (or get referred) to the top people in the relevant fields explaining your problem, if you don't get any joy from your local health services. Often the top scientists will be interested in solving a strange or challenging problem, whereas the local folk are just reading the manual and trying to get by.
Very best wishes to you. Keep us informed.
No chemicals that I am aware of. I did fall from a ladder three days before this started.
If your symptoms do not respond strongly and rapidly to an appropriate dose of steroids, then inflammation is not the problem.
I just came from my GP.
He has prescribed a taper.
60mg, 40mg, 20mg
Any recommendations? I am a little scared, as I haven't really taken steroids before, only a small amount.
Over what period?
High doses are likely to make you feel hyper - and should take away all pain (whatever the cause) .
Sounds a bit like a sledgehammer to crack a nut approach-but we’ll see!
Good luck with it…
I thought so as well. I was expecting 20mg or something like that. I am concerned about that much.....
You won’t be on it that long.., what is your taper?…
I am not for sure yet. I'll let you know.
60 for 3 days40 for 3 days
20 for 3 days
Really scared to take that much.
I am really sensitive to medications !
Well as that’s only 9 days hopefully you’ll be off it before you realise… but as I said it may make you feel hyper….
I don't need that. I already fighting anxiety from all the pain.
..but if it gets rid of the pain, then your anxiety will diminish maybe…..and you won’t know until you try the steroids.
Given the symptoms you are reporting - including headache and abdominal pain, if the question is "Is this in the PMR/LVV/GCA spectrum?" then the only option is to treat it as if it IS GCA. And if it IS GCA, then you need that much to get a noticeable response. My only concern it isn't long enough,
Normal CRP but abnormal ESR
Tests for adnenal function
Blood tests reveal high ESR whilst CRP in normal range
High ESR
