Yesterday a rheumatologist diagnosed me with GCA and, in an attempt to remove any threat to my sight, put me on 60 mg of prednisone immediately. He based this on the PMR symptoms and some visual symptoms. I posted about this yesterday.
He advised me to see my eye doctor. She did not see anything at all in my visual symptoms characteristic of GCA. She was surprised and disturbed that he made this significant diagnosis without more blood work and a biopsy.
Now that I have been on the prednisone, though only 2 days on 60 mg, the inflammation will be gone and there is no way, she says, we will ever know whether I really had/have GCA.
She will talk to him today to see if he had any other information she does not know about.
I'll trust my GP to sort out the best thing to do. I certainly am not staying on 60 mg of prednisone a day longer than I have to!
Good news but confusing!
I'm not sure what other blood work she wanted to be honest if you had a raised ESR. There is no blood work that would confirm or rule out GCA just like that. The rubrics for treating suspected GCA say not to delay starting steroids while waiting for a biopsy if there is a strong suspicion of GCA - the patient may go blind in the meantime. And it is irreversible - once one eye has gone the other almost always goes within a week or so.
Although finding a positive temporal artery biopsy is 100% confirmation of it being GCA, getting a negative biopsy result does NOT mean it is definitely not GCA. The giant cells they are looking for are not spread evenly and regularly through the tissue. Even with a decent length of artery they may look at sections that have no giant cells - but if the symptoms and other findings suggest the likelihood of GCA then the correct action is nevertheless to give high dose pred. Not doing so means there may be a risk of you going blind.
Your rheumy also explained to you that it is possible to have GCA WITHOUT it affecting your vision - but it can be affecting your brain and other parts of your body. He saw you with the symptoms, she didn't. Even after 24 hours there would have been fewer symptoms - but I imagine he sent you to her because he wanted to know if any damage had already been done before the pred. Obviously she couldn't see anything so that should be fine.
I'm surprised though - because usually eye specialists are far more aggressive with the use of pred than rheumies because they are usually more aware of the terrible consequences of ignoring possible GCA affecting the optic nerve.
Sounds like a snap decision was made somewhere, doesn't it? You're right to get off the 60 mg. forthwith--
Barbara
Sorry but I'm not sure I agree - see my response to snapperblue.
Personally, I'd accept 60mg until further tests can be done if it was to protect my sight. When it is gone that is it - no way back. It is something that happens to thousands of patients per year because their doctors do not respond quickly to complaints of symptoms that could be GCA. And believe me - when you meet these patients who were ignored it is heartbreaking.
Hi can u plz tell me your symptoms as im in soo much pain im trying to diagnose myself thats all the doctors do is xrays and blood tests and nothing showing up its getting me down
Both the doctors relied on the same written description that I gave to each of them. The rheumatologist thought they indicated GCA, the ophthalmologist does not. The rheumatologist's diagnosis of GCA was based entirely on those symptoms and the PMR and the lack of consistent improvement in PMR at 20 mg pred.The eye doctor thinks it is significant that my visual symptoms occurred in both eyes at once- with an arterial blockage, you'd expect one eye only. So she- and my GP- thought the symptoms more likely resulted from a brain problem (migraine) than arteritis.
The eye doctor says my retinas look great, unchanged from my last exam last summer. Good news but not definitive of anything.
The rheumatologist is being conservative in immediately treating to protect my vision, the ophthalmologist is being conservative in wanting to avoid a long course of high levels of prednisone and all its ill-effects. There does not seem to be a way of telling who is right!
I really trust my GP and will rely on his advice about my future dose of prednisone.
Not the retinas that are the problem - it is the optic nerve that suffers. However, GCA is a clinical diagnosis - based on doctor's observations.
You can have something called cerebral vasculitis which might also cause such symptoms. However - have the symptoms improvedin any way? If you weren't responding with a 70% global improvement in the PMR symptoms within a week (at the 20mg dose) then there is a query about the diagnosis and further investigations are needed. Though it does sound as if you were pretty much there with the PMR symptoms.
You're in the US aren't you? Is there an option to go to Mayo/Johns Hopkins/Cleveland clinic? because it is pointless having a rheumy and an ophthalmologist squabbling over the diagnosis. And a GP is just that, a generalist.
True, I was not responding as expected to the low dose of prednisone, so there is still some explainng to do. I had a 70% improvement on the 20 mg most of the time- the question is about why I had 2 recurrences of worse symptoms. I live in Boston (the one in Massachusetts), a major medical center, so there should not be a problem getting a second opinion.
It has been great having no pain for a day and a half (while on the 60 mg dose)! I had already adjusted to expect some pain off and on in the hips, etc, and especially in the shoulders and upper arm on arm movement.
Thanks again for you continued interest and information!
Since you are in a system that could probably provide it - is there any chance of FDG PET/CT ((18)F-fluorodeoxyglucose positron emission tomography/computed tomography)? It may not be too late to see something if you still were having pain.
The trouble is, the very high doses will work with other things too. Which is nice to be pain-free but does have other problems!
Certainly is confusing, snapperblue! I have had more helpful advice on this site than from my GP!
Thanks so much for sharing - and thanks too to EileenH and others. You really are a great help.
Doris
My GP and rheumatologist agree that it makes sense to do the temporal artery biopsy. There may be some signs of inflammation there even after the prednisone or if the main inflammation is in another part of the artery. Or not! So even if I have GCA, I have a fairly high likelihood of a negative result. A positive result would tell more. A negative result would be inconclusive and only mildly reassuring. I'll stay on the high prednisone until the results are back.
They are taking this very seriously and have set the biopsy up for 7:00 tomorrow morning.
Eileen- I forwarded your suggestion about the CT/PET to my GP and he will raise it with the others and we'll see what they say.
Thanks for all the company on my personal roller coaster ride!
I agree that this site is fantastic. However, I also think I have one of the world's best GPs. He is always right on top of things, including recent changes in dogma, and ready to hand out material explaining the background. He is also kind, respects his patients' input, and (get this!) makes HOUSE CALLS for his disabled and elderly patients (including my mother during her advanced dementia). He actually recognizes that it easier for him to go to them than for them to get to his office! One of the hospital nurses emphasized that he is not JUST nice, he is a really smart and capable doctor. I feel really lucky!
That all sounds a good plan. You can get positive results even after a couple of weeks of high dose pred - it is just it isn't always accurate but it sounds as if they are aware of that.
Thinking of you - fingers crossed it all goes well and they get a sensible answer.
Sounds like my lady - house calls are a no-brainer to her too.
You are a lucky patient!!
Sounds as though you really do have a good GP! I must admit, mine is pretty good. He took over only a year or so ago when my other one retired, and he certainly does seem as though he cares and really is trying to do the best for me - so I must be thankful.
Dear Snapperblue, I would like to know if the 60 mg. of prednisone is giving you any side effects? Reason I ask is that I am only on 15 mg. and I am having elavated BP (for which I now have to take metropolol , I ordinarily have normal BP, and some moderate anxiety. I have always been sensitive to medications and supplements, meaning I need a minimum dose of most things and tend to get several side effects.
I am curious if anyone else has these two issues ( any other issues) with prednisone. I don't see a lot of people mentioning that subject.
Oh and Snapperblue, ten years ago I had GCA, was put on 80 mg prednisone by opthamologist, and had a biopsy about 2 weeks later. It came back 'inconclusive' from the local hospital lab - but opthamologist told me to stay on the 80 mg. Then it was sent to the University of Arizona lab, and it came back negative. But that was weeks later, and by then I had to start the normal reduction from 80 mg. and that took about 2 years. I just remembered that I did have to take some propanalol during that time, but not since.
So that is my experience, best of luck with biopsy. It was not too bad, but they shaved some of my hair off and I wasn't expecting that.
So if anyone has elevated BP or anxiety from prednisone, please share what you did about it if anything.
Thank you ladies. Mary Jane
PS I forgot to add that I had perfectly normal ESR and CRP before, during and after treatment. Never even a slight elevation. But still was treated.
Yikes! 80 mg seems very high. Good to hear that you could successfully reduce from that. Did you have bad side effects with the high (over 40 mg) doses? The lack of abnormal ESR and CRP are a surprise to me too.
This is only my second day on 60 mg prednisone and I have not had blood pressure checked, but on 20 mg my bp was somewhat elevated (133 systolic versus usual 100 to 115). Maybe that is within the normal range if you are a bit on edge at the doctor's office. I had a high heart rate some mornings when I took 20 mg, but am not having that now, oddly enough.
The main problem I am having is insomnia. I have long (4-6 hr) intervals of poor sleep- it seems that I am not sleeping but I probably do sleep some. I'll remember that the clock said 12:35... then 12:55... then 1:15, etc. It is very unpleasant. My eyes are dry and sore and I'm not awake enough to read or listen to podcasts. I have started getting up and going on the computer or having some chamomile tea to warm up. I usually sleep a few hours in the early morning but feel really dazed the next day. All I have taken is melatonin, which some days seemed to help, other days no effect.
I am not sure whether I have anxiety. I am having some trouble concentrating and feel restless, but I am also in the middle of this crazy process.
This is turning out to be not my favorite disorder, though there are certainly much worse things running around!
I have had GCA twice now in the 14 years I have had PMR and each time I have taken 60mg for about three weeks then come down slowly. I was under The eye hospital Morefields london. they did not do a biopsy or blood test as they said it wouldnt help. I am on 10 mg at the moment as have had flare up in last few months now today my eye is hurting so might have GCa coming back
Hi Mary Jane
I have had, amogst other things, high BP, high blood sugar, high colesterol, put on weight, brain fog, poor sleeping, peeing more than normal (for me).
What I did - apart from learning to live with it - was talk to the nurse at the clinic - my rheumy was keeping track of the "more serious?" things like liver, kidneys and control bloods but he wasn't looking into the other things. I had a routine check with the nurse and she asked if anyone was keeping an eye on my BP etc. as everything was very elevated - on the edge of needing treatment - after that I have been to see her once a month. Fortunately I seem to have got away with it - no extra meds. and as I am now HOPEFULLY on the way to getting my pred down to a maintenance dose I am hoping that the worst of it is over with.
I had some success getting my weight down with a low carb/high fat diet, strangely enough my colesterol fell also, I had been wondering whether that would have gone through the roof with all the full fat food but it didn't.
Don't know if this was any help Mary Jane.
Hope so.
Janet