I am a 57 year old male. I became very ill 4 1/2 years ago.I was a director of a college and engineer. I have had migraine headaches for 40 years. In 2019, I was remodeling a building for and went home with what I thought was a migraine. The next day, the headache was still there,and I felt like I had the flu. I was having to lay down for hours a day. Severe headache, different than a migraine, more muscular, in my occipital, over my head down my jaws. Major fatigue, vision issues, pain in my neck shoulders and mid back. Lower back pain and even the bottom of my feet hurt so bad.
Eventually a tumor was found behind my right eye and removed. I actually got worse. I was told I may have a CSF leak in my spine. I had a bloodpatch, DSM/CT Myelogram, but again, I got worse. I was treated for lyme and heavy metals, and again, got worse. I even had a brain stimulator put in to try and stop the headaches. It did nothing.
My latest tests that show high readings are. C4 is 50.9, Ch50 is grater than 60, ESR 25, CRP 5.1. Cpeptide is 4.9. I saw an immunologist and neurologist, and neither can figure out what the readings mean. I saw a rheumatologist a couple of years back, and he just said fibromyalgia.
I have suspected I have GCA and PR. I know my readings aren't sky-high, but just wondering if anyone else has similar readings with theses disorders?
I am completely disabled and unable to work.
Thank you for your input.
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Harrisonboy
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,,, so sorry to hear about all the troubles you have gone though in the last few years.
Your readings don’t need to be sky high, in fact up to 20% of patients don’t have the raised markers that most doctors think they should. They are part of the diagnosis- but only a part.. symptoms are more important. Having been there with GCA, have to say all you mention do sound very much GCA ish..
Think you need to see another rheumatologist - and hope they are a bit more knowledgeable about GCA/PMR.
Not sure where you live, but if it’s UK [although guessing it may not be] we may be able to recommend a good rheumatologist.
I live in a small town in Arkansas, US. Not many resources or options for me here. That is why I posted on this sight hoping for some recommendations.
It is hard to convince anyone, without higher readings, that this is possible.
The only reason I think this is a possibility, is the pain I have in my face, neck shoulders is unlike any headaches I have ever had. Severe and I end up in the Emergency Room. Because I also have migraine, they just blame it on that and say all of the muscle pain, fatigue, night sweats, visual loss is fibromyalgia, which I personally don't believe in. I think doctors just throw that diagnosis out like candy, to get rid of patients
We do have quite a few members from US…hopefully someone in Arkansas may see your post.
And yes, GCA headaches are like no other- many can testify to that.. and if it’s is GCA then the first drug to be tried is Prednisone- any chance of suggesting a trial of that to your PCP/GP or if you go to ER again, the staff there.
Couple of links which may help you persuade the medics -
Call the Vasculitis Foundation. They should be able to point you in the right direction. Personally, I did not find the Mayo Clinic to be helpful. I can certainly feel what you are going through as I had similar complaints. At least you found this wonderful and extremely helpful group. The best to you.
Complement readings aren't usually significant in GCA diagnosis but recently there has been some thought they may track disease management when the biologic tocilizumab is used for treatment. But otherwise I don't think they tell us much.
Your ESR is outside the usually quoted normal range but for both that and the CRP we would need to know the normal range quoted by your lab as they do vary. because of technique and units. On the usual basis that ESR is only slightly raised.
After nearly 5 years without visual problems, I would be surprised if it were GCA though I suppose LVV could be a possibility. Has anyone ever done a PET-CT scan to look at inflammatory levels in the body?
As a PS, your symptoms could be very PMR-ish. Has anyone ever tried a course of pred? A PET-CT and a trial of pred (in that order) might well show something.
Yes, 3 50mg tablets. I was scheduled for a CT of my ear drum and they wanted me to take it before the scan, but I didn't take it? Don't know why I was supposed to take it?
If you cut the tablets in half you have 6 days worth of 25mg. Perhaps that would give you enough of a trial to see if Pred is the answer. I am in Oklahoma City and finding doctors who listen think outside the box are hard to find here too. My PMR pain left after the first dose. At least 25mg should put a bit of a dent in yours and get you to your next appt. Perhaps someone here has some input?
My ESR and CRP were barely elevated, even at my worst when I couldn't even get out of bed because my arm and shoulder muscles wouldn't work. I hope your doc does some research. Maybe turn him on to this site???
Please try the pred,I was amazed at how it worked for me,I couldn't believe the relief after only a few days ,after months in agony. I believe I was put on a really high dose,60mgs,but didnt question at the time.time.Im now down to 1mg and managing well.well.Good luck,hope you get sorted.
I have not had a PET. Cannot get anyone to do it. My CT and MRI is normal.
Again, I have no clue what this is, but I feeli
Like I have the flu or COVID all the time. I hurt so bad, I can barely function. The headaches are my worst symptom. Just getting up or moving my head can trigger the headaches. I do have significant vision issues. I haven't lost vision, but my vision is blurry, I can't focus and even to the point it is hard to read.
I was diagnosed with binocular vision disorder. This is where your brain and eyes don't work together. My eyes hurt so bad all the time. Lots of redness and dry, especially when the headache is high.
I wouldn't disagree that you have some autoimmune lurgy of some sort (most of them cause flu-like feelings) and I'm surprised that the rheumy plumped for fibromyalgia without more extensive imaging and testing. In my book that is a get out diagnosis when they haven't a clue. I would say you need a more curious investigator of whatever variety, I really think a PET-CT scan would be a significant set of results - whatever it is to rule things out and possibly in. How you find one is beyond me though.
Binocular vision disorder could certainly give you lots of headaches. Have prismatic correction or other options been suggested? I have this to a minor degree.
Your health issues seem very complex. Do you have access to a thoughtful general physician who might be able to look at things in the round and suggest any diagnostic tests that might move things forward for you? Perhaps may suggest some suitable medication that would make you feel better?
so sorry you’ve have had so many health issues. I had GCA, and went to two doctors who did not diagnose it. The third was a friend who happened to be a retired Internist. Quite by chance he suggested GCA. I was in New Hampshire at the time. I had been having terrible headaches, jaw pain, double vision, pain in my joints. I went to Dartmouth University Hospital ER. I had biopsies in both my temples and GCA was diagnosed. After being given 60 mg of prednisone daily to begin with my headaches began to get better. I would mention GCA to your doctor and ask him/her to send you to another doctor. There are doctors who know about GCA. Do not give up.
Do please persevere. I'm no expert but it does sound a similar story to mine - told my muscle pains and weakness were down to fibromyalgia (for years) only to be diagnosed with GCA and PMR last October, confirmed by biopsy. Immediately put on 40 mg Prednisolone which improved pain and stiffness in a day. Now on 20 mg, weepy and bad-tempered, fatigued, but happier knowing that this is the safest option. Please keep in touch. This really is a marvellous site.
Slightly high but I was recovering from a chest infection at the time - CRP = 24 (15 Dec), CRP = 8 (27 Dec). And anyway, those figures are not reliable. My rheumy is far more interested in symptoms, "many of which are due to her high dose of Prednisolone rather than (her) disease" says the letter today. So now reduced from 30mg to 20, and then 15 for 4 weeks from end January, then 15mg for 4 weeks, 10 for 4 weeks, then by 1mg every 4 weeks thereafter. But the relief I got from steroids was spectacular and pretty swift in October! All the best 🙂
My rheumy is far more interested in symptoms, "many of which are due to her high dose of Prednisolone rather than (her) disease" says the letter today.
Really?🙈 obviously got a new crystal ball for Christmas
As long as the symptoms stay away it is pretty typical tapering. But the trick is to stop reducing IF symptoms reappear. Do you mean 20/15/12,5/10? I do hope do - 15 to 10 is far too much at once.
As you clarified, there is a 12.5mg in between the 15 and 10mg so it’s worth a try. But as PMRpro has said, should you have a return of symptoms at any stage then you need to stop reducing - and seek advice.
Thank you so much. Very reassuring. The rheumy in question is also interested in my emergency aorta repair following open heart surgery June 2022. She has requested blood results from the university hospital which did the op on my aneurism to see whether there was any indication of GCA at the time, and will let me know of her efforts. 👍
The 1st time I had PMR and responded SO well to Prednisone , my Dr. said that a quick and dramatic response to it , validates the diagnosis. Also, a rheumatologist confessed to me that it is a very, inexact science. Sorry for yr misery and kudos for yr perseverance.
So very sorry to hear what you've been through. It is truly overwhelming. Consider trying the Pred. At least, if it works you will have pain relief and a starting base and protecting your vision. If it doesn't work, you will know that it isn't PMR or GCA. Still a starting base. I went without diagnosis here in Nova Scotia. In agony for 5 months and diagnosed with "old age". Finally referred to a Neurologist in Halifax, diagnosed with PMR and put on 20 mg. Pred in Jan. 2022 and pain was almost gone within 24 hrs. Stick with this forum. You will be so glad you did.
Would there be any possibility of getting a referral to the Mayo Clinic? The one very strong point with them is that in most cases the doctors and specialists start from scratch and don't work from previous doctor's opinions that have already muddied the waters.
It might be worth trying the ER and telling them you suspect GCA. See if they will do the biopsy and scans. However, you cannot have predisone in your system for the biopsy or it may come back negative.
I am in Illinois..in my opinion you need to demand a 2 week or month trial of the Prednisone..don't leave the office until you get it written. I calmly told him they'd have to call security to get me to leave at that point, because I couldn't work an was going broke and would lose our house and that my life was relegated to a recliner and would he live like that? And yea, many times the fibro diagnosis is just to get you out of their office. My ESR was similar to yours, it isn't the main/only criteria, symptoms and the reaction to the Pred are.
I have had to get up to 30 mg in the beginning last February to get the real relief to go on living normally. Finally now down to 20 mg. I have had only the moonface (after 10 months on a "high" dose) as the only side effect..it is like a miracle drug for many/most of us. What have you got to lose? Nada..and much to gain if it works..
Also, have you considered driving up to Mayo in MN?
Yes, you are correct. I am completely disabled, lost my job as a director of. College and engineer. I have to lay down most of the time. I honestly didn't think I could move this morning. The pain in my body is severe and the headache in my face and back of head is a 12.The issue is, after almost 5 years of chasing this, I am out of money and resources. My wife is done trying to figure this out.
Just seems hopeless, but going to ask for a trial of prednisone. I havebtaken it before for a few dys, but it was low dose.
yes, a low dose and only a few days probably wouldn't tell you anything. And now this is only my personal working theory from reading hundreds of posts on here over a year..but it appears to me the "younger" one is with PMR (I was 53 when it hit, 55 at diagnosis after MANY THOUSANDS of dollars spent trying to find out what was wrong, not to mention not working/contributing and even applying for disability -denied by the way- even with many other health issues on MRI's, years at pain clinics for injections, spinal fusion surgery in my neck, but I digress)- that the more Pred it takes to get it under control..my theory is our systems/metabolisms are faster than say, a 76 year old. Not to mention we all are different and I always was more impervious to meds than anyone I knew. Also, some believe the longer it takes to get diagnosed, the longer and more pred it may take to get the inflammation down.
I was the one who found PMR, not any doctor. I had had a few steroid Medrol Packs over the years for my other issues, and noticed I always felt WAY better at first..until I got under 20 mg on day 3 or whatever it is. So I literally googled "what disease does prednisone make better very quickly?" a few times and finally this site came up. THAT is when I went in there armed with knowledge and refused to leave. You sound as desperate as I was..please get that trial for a month..you have nothing to lose.
I was former world traveler and am happy to say have at least traveled on planes/went on a cruise within the US again again since I got my Pred..I up my dose it during the trips because sitting on those small seats flares me up..and I even started working part-time again last month..in a physical job! Don't give up hope.
Thank you so much forbyour kind words. I have been toldthis is all in my gear or just fibromyalgia. Because I also have migraines, that is what they blame everything on.
You are correct. I am going to insist on a higher dose PRED tril to see if it works.
That is the only thing I can think of to try.
One other question I had isnthis weird symptom I have, probably not related. I have to eat constantly to feel better. My bloodsugar is normal. Eating effects the headache slightly, but doesn't stop it or keep it from happening.
I also have night sweats, the bottom of my feet are killing me. I feel like I am wearing an abdominal binder, and all the muscles in my back, neck and especially my face are so tense, I can barely move. I actually had similar symptoms when I had tick fever. I was also removing mold from a building when this started. No doctors believe that itbis tick or mold related.
I had a few night sweats, but figured it was menopause. My feet didn't hurt, but I am for sure atypical as it is my neck (mostly left), and oddly it then went to my right side flank/ribs/and hip. Once in a while my knees will hurt or a day for no reason. Once it went to my side, they immediately did an abdominal MRI to rule out any mass there..and he did a chest x-ray to rule out a rare cancer and sent my blood to Mayo for 3 other rare diseases. All normal.
And then, my ESR actually went UP on after a month on 30 mg (I laughed because I knew he'd see that!) and I think only then was he convinced it was PMR (all other rheumatoid or autoimmune diseases had been ruled out by then, also).
Again, you have ZERO to lose by trying this..I cannot believe they haven't done it already, to be honest. I am gonna try to find a blog I found where some man went through similar and it took him taking 35 mg (against the dr) to get better...let me look
I'm an exception to your theory: my first symptoms appeared when I was still 51 and I wasn't diagnosed until I was nearly 57 - and I had worked out what it was myself too by then. I was given 6 weeks of pred, 2 weeks each of 15/10/5 and stop. Less than 6 hours after the first tablets I could move normally and 6 hours after missing the forst 5mg tablet I was in a worse state than pred pred. The rheumy wasn't interested, he wanted it to be an inflammatory arthritis, But a different GP was convinced enough. But nearly 20 years on - still got something! But Actemra has got me to 7mg pred reasonably comfortably.
As others have suggested, those three, 50mg prednisone/prednisolone pills could tell you an awful lot, very quickly, one way or the other. If there is any autoimmune-involvement, those symptoms should improve drastically within three (daily) doses. No subsequent taper is needed for courses shorter than a week.
My CRP and FDG-PET/CT scan are all normal, so my GP and rheumatologist told me I can not possibly have any "inflammatory disease". They said I must be imagining that steroids help so much. They tried to dump me in the Fibromyalgia File, but duloxetine didn't work, whereas steroids did. So I used the prednisolone I had left in the drawer to salvage the two-week, COVID-postponed holiday we had booked. I got massive relief a mere 14 hours after taking the first 20mg tablet (but not as much as the time my GP tried me on 30mg; 50mg is a decent trial dose for possible GCA). I kept a diary and photographic record of the enormous improvement in my activity levels: when we got back, I even managed some serious carpentry repairs that had been building up for years! All my symptoms returned as I tapered off my dwindling stock of prednisolone, until I became virtually housebound, once again.
Now my (3rd) GP has found me a rheumatologist (my 4th) who is finally taking me seriously. He says I have all the symptoms of PMR, and a hint of GCA, but he thinks an even rarer, genetic, autoimmune disease may be the cause (something similar to myasthenia gravis?) He says he is willing to treat me based on the existing evidence, even if all the investigations do not result in a concrete diagnosis. So I am awaiting new types of test results (including my first ever ESR).
If prednisolone hadn't worked so well (I've been on and off it three times) I would have been happy ruling out autoimmunity issues, like the doctors, 4 years ago.
Both PMR and GCA are classed as autoimmune diseases of the autoinflammatory type. They respond to steroids because steroids suppress the immune system. A strong and rapid improvement in symptoms after steroid treatment has begun supports their diagnosis. Good luck!
Reading your story and responses was heartbreaking and frustrating…..I can only imagine what it must be for you to live it! Undiagnosed chronic pain is the worst, it impacts every part of our being including not only physical, but mental/emotional and even spiritual aspects of self.
It seems as if the medical professionals have tried a number of investigations and treatments that have been unsuccessful. As others have suggested a new rheumatologist may be in order and a PET-CT and trial pred could be tried….if anything it could rule out GCA/PMR, however it could also provide a diagnosis. Indeed it is the lack of a diagnosis (and resulting treatment plan), that is so disheartening.
Your desperation for answers is evident and not unreasonable. If you can, muster up what strength you have left to advocate for your health and insist on whatever tests/medications you believe will help. Quality of life is sometimes overlooked, and your suffering must be addressed. Wishing you all the best with your ongoing search for relief.
I was 55 and newly retired when PMR symptoms emerged literally overnight. I had also just moved so didn’t have a GP so went to local ER at hospital and came out with medications that didn’t help and no diagnosis.
I suffered 5.5 months (with worsening symptoms that spread from hip girdle and knees up to shoulders, neck and biceps) till I got a wonderful GP who immediately ordered tests (CRP was 29, ESR was 32). He diagnosed PMR and with much convincing I tried a trial of 20mg pred for 10 days. Within 8 hours I got huge relief, could get up off a chair/toilet, walk without pain, etc.
As others have mentioned up to 20% of folks do not have elevated inflammation markers that accompany their condition. So stand your ground for the trial of pred regardless. Seeing that you have symptoms of GCA, a higher dose may be required.
I certainly did not suffer near as long undiagnosed, as you have. It sounds as if it’s taken quite a toll on you….and you deserve better than that!
Thank you so much. Yes, it has taken a toll on me and.my family. This unknown disease has cost me everything but my faith in JESUS. Justbprayingbfor some answers and relief. I never dreamed you could be in this much pain and be alive...
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