one week ago I developed a left sided temporal headache pain with vision changes and jaw claudication. I’m in my 50s have a known history of auto immune disease, Crohn’s. I went to ER And they began prednisone scheduled bilateral biopsies for the next day which has since come back negative. Since then they told me to stop steroids. GCA negative. No history of diagnosed PMR. i continue to suffer my sed rate and CRP are slightly elevated. Rheumatologist is sending me to eye dr now I. A couple days. I’m at a loss. The pain is bad and I feel dismissed by all. Thanks just for listening.
🙂
Written by
Newbiewithheadache
To view profiles and participate in discussions please or .
I'm so sorry that you are coping with this. It is unclear a) how long you were on the prednisolone and whether you have stopped b) did the pred have an impact on your symptoms?
I'm no expert but your symptoms were very GCA like. Others with a better grasp of the issues will be along to help but my feeling is that a second opinion is needed as biopsies do not always show the giant cells, depends where they were lurking.
Thank you just for replying. It’s so helpful. Yes prednisone was started immediately and provided relief. As soon as I was told to stop them due to the negative biopsies I began to worsen again. So frustrated.
I’m not surprised you are feeling frustrated. First of all, if they don’t think it is GCA they need to try a bit harder to find a differential diagnosis, for example, a CT of the head. At least they are sending you to an opthalmologist soon who hopefully will have more idea of GCA.
As Fatsiajaponica says, a negative biopsy isn’t definitive proof of no GCA, whereas a positive result is almost definite. This can be due to insufficient sample size and the giant cells being present elsewhere than your samples. The arteries they use are convenient rather than being a guide to the others in the head. Steroids can affect the result but in your case you had had Pred for a day so less likely. There have been a few people who have passed through here where the doctor has put everything on the biopsy, when there is enough written that says they shouldn’t.
I was diagnosed with GCA aged 54 on the basis of rapid improvement of symptoms after the first dose of 60mg Prednisolone and symptom profile. My inflammatory markers were raised for me but not out of normal range. My biopsy (done 8 days later) was negative, but no matter, they treated it as GCA. My head CT showed no obvious other causes. I know Pred was needed because 3 weeks later I had a problem with absorption (long story) and symptoms came flooding back until I sorted it out.
I wanted to give you some written evidence rather than you just quoting some forum from the UK in any argument, but my fallbacks seem to be behind paywalls now. When the UK wakes up perhaps PMRpro or DorsetLady can provide you with something. At 3am my brain is too addled from lack of sleep with sore shoulder from an incident with a dog.
Anyway, you need a second opinion I think and fast. Do you still have vision changes?
Yes I do have vision changes. Blurry and slightly doubled. With weird spots. My inflammatory markers are coming back slightly elevated now nothing off the charts. CT scan of the brain done initially was clear. Thanks so much for your help
With visual symptoms you should be on 60mg minimum particularly are one dose had a good effect. Guidelines say treat first ask questions later and not to delay treatment waiting for tests and results, because of risk to eyesight and your changes are a red flag. Inflammatory markers are great if they are high but again, not diagnostic if they aren’t. If you are not seeing an opthalmologist before the weekend I would be considering another doctor.
I did find something about negative results not being helpful. I suggest you read all these links (beginning and end at least) and have them ready for round 2 if necessary.
This is quite shocking, you must be very anxious. Surely they know that a negative biopsy is just chance and not definitive proof that you do not have GCA. They need to hit on the right section of artery. I really would not stop the steroids and seek a second opinion as a matter of priority. The eye hospital appointment is a good idea. The worst consequences of a mis-diagnosis would be for your eyesight. I sincerely hope it is soon. My GCA diagnosis was done via ultrasound. Good luck, let us know what happens please.
As others have said sounds very GCA to us,, have a look at this related post -in it I do mention an article from Medscape -probably same as the one SnazzyD is referring to -
They are wrong - a negative biopsy DOES NOT MEAN THAT IT IS NOT GCA. It only means that they did not find the cells and signs that confirm it. That is not the same thing and if symptoms continue to suggest GCA, then it should be managed as such.
Find another doctor ASAP who will take that view and don't be fobbed off. Visual symptoms and jaw claudication are both red flags and must not be ignored even with a negative biopsy.
As others have said a negative biopsy does not mean GCA isn’t there. Along with the fact pred gave you instant relief and symptoms returned when it was stopped is another sign they most likely have it wrong. It is often said that symptoms can trump results.
I had a negative biopsy 4 days after a positive ultrasound for GCA. They just couldn’t find enough of the infected sample. As soon as I started pred I felt like a new woman.
It’s some relief you’re seeing an eye person who are usually very good. Good luck and make sure you tell them how awful you feel and that the pred did make you feel so much better in the short time you were on it.
I had a similar thing last summer. I have PMR and had got down to 4mg (the point at which I’ve failed twice in previous reduction attempts) and started getting a pressing headache on the sides of my head, building up over a week, followed by 2 separate episodes of double vision, so I went to A&E. I shared my worries about GCA but they didn’t seem to take it seriously until I saw the Dr 7 hours later who told me this could be serious! By this time it was late on Friday and I didn’t get tests done until the following week but he put me up to 40mg pred and the symptoms went. By the time the tests were done, the results were negative but as I’d been on the higher dose, they weren’t surprised and as the symptoms went away with the higher dose, I’ve been treated ever since as if it was probable GCA. It sounds like your dr might not have been cautious enough. I’ve found that some doctors are great and some are inexperienced with PMR & GCA and you have to be really engaged in your treatment.
hello your story sounds similar to mine, at least your ER was on the ball and started steroids right away to protect your eyes.
My ER doctor totally missed or dismissed not sure which but suspect the former the possibility of GCA they did an xray and a CT filled me up with fluids and sent me home.
They did refer me to a Neuro but that took 8 days those 8 days were pretty much hell, incredible pain in my legs and arms vision issues. The Neuro put me on 60mg steroids right away and they provided almost immediated relief but here I sit 3 months in and I do not have a diagnosis yet, biopsy and ultrasound both negative no doubt because I had been on steroids for 8 weeks.
I count myself to be very lucky not to lose vision in my right eye after 10 days of symptoms.
The Neuro and the Optamologist both say GCA but the Rhummy is not sure so now I am tapering down the prednisone to see if the symptoms come back and then I guess she might get on board.
If you have had some double vision, my advice is to increase your prednisone. My optometrist ignored my double vision or rather said he could find nothing wrong. Within 2 days I was blind in one eye. You have to take a stand with your doctors and tell them the double vision is not normal. I also had jaw claudication and was losing weight. So keep the pressure on your doctors to be looked after. Good luck to you and if the prednisone was effective, then you should be staying on it and reducing gradually over the coming months, years. Once the eyesight is gone, I cannot be put back. Good luck
You poor thing. The fear is awful. Just to say that my Rheumatologist said recently after reports from an ophthalmologist who said both eyes were healthy that it was good he found nothing but it is only half the story. He felt that it was a return of GCA and told me to treat it as such. As the visual symptoms cleared I think he is right.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stelara for GCA
Still pushing for GCA diagnosis…
Still suffering - update
Suffering with GCA
GCA worries update
