Medscape is credible and the article was written by experts. Apparently aging increases the probability of getting GCA. It is rare and not everyone gets it, as they age. I was 59, when I was diagnosed. One of the reasons, they didn't want to perform a biopsy, was because I was considered "too young". The experts also discount "not biopsying" for this reason. I think the youngest person to be diagnosed is under 40. thanks. all my best, Whittlesey
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Whittlesey
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There are a great many of us 'too young' at diagnosis whether it is PMR or GCA. I often think that an acute onset must be the easiest diagnosis, but I was finally diagnosed at 57 after 2+ years of being fobbed off by male doctors. Only when I saw female doctor - who listened to what I was saying - and not what she thought I was saying was the door to diagnosis open. My onset had been very gradual and because I have notes from the onset, the symptoms had been increasing for some considerable time before I began bothering doctors.
That was 13 years ago and I keep hoping that things will improve for today's patients. Things are being done and research is now embedded in here, but the scary stories keep on coming of patients diagnosed in in their 40's and 50's and even in their 30's after a great struggle. I'm hoping that as it hits the generation behind mine, which will affect the workforce, that even more medics will sit up and take notice.
I'm in agreement with what you've said, polkadotcom. For me, it was four months, when I realized that I might have it and the doctors were refusing to do definitive tests. They wanted to continue to treat me for migraine headaches. This was a different headache and I was very ill with it. I remember my mother being like that, before being diagnosed. She sent me literature, and we talked quite a bit, about the symptoms and that I might have it. The literature at that time said there was 'suspicion' that it was genetic. In NYC, the doctors weren't hearing that. Telling me not to worry, I was too young and that migraines could change over the years. -- -- -- I tried three or four different migraine medicines, after they wore off, the headache and sort of systemic "not well"ness, recurred. Finally, a neuro surgeon who did a nerve release for the meralgia paresthetica (thigh) that I was dealing with, at the same hospital, on a routine visit, noted that I had had a high c reactive protein. We talked and he asked if he could do a biopsy. He thought I was right. He did the biopsy and it was giant cell arteritis.
They did not say that it was an "acute onset". I had the diagnosis from the lab. I had to meet with their opthomologist, who was on the Board at Mt. Sinai and I believe, ready to retire. I had to go in a wheelchair to his office two blocks away from the hospital. He wouldn't do eye tests in the hospital. It was a Saturday and he came to his office to "see" me. Most opthmologists now no longer turn out the lights when they test your eyes, most of the equipment is computerized, lights remain on, opthamologist remains at a respectful distance. This man had older equipment. He turned the lights off. It seemed he was all over me in positioning for the eye tests. He doused my eyes with the fluid that dilates them, it stung. It was horrible. He said, "well sometimes you have to feel pain before you feel better." Didn't like that. As a seasoned paralegal, working as feminism began to be respected, sometimes the older lawyers, thought you were there "for a husband", which I wasn't. I had a boyfriend, not at my job. He was a little like this and I had just been discharged from the hospital. He kept the lights off. He said he thought I had either a virus or a fungus, which begins with a "v" can't remember the name of it, which imitates GCA. He said, there was a treatment, only available in Arizona in which they used large doses of either anti viral or anti fungal medicines and it clears it up. He said it is given intravenously and you have to be hospitalized for two weeks.
I said, "I can't afford to go to Arizona". He said, that possibly Mt. Sinai could work something out, where I wouldn't have to pay for the trip. As a litigative paralegal, I was beginning to think --- 'what is this'?
I said, "that doesn't really make much sense." I then told him I wasn't feeling well, and if the exam wasn't finished I had to leave. I had arranged for paratransit to pick me up at the hospital.
He said not to worry about paratransit, he could reschedule it for me.
"uh, no, that's fine" I said. And left. I could barely see from all and extra, of the dilating fluid he put in my eyes, a few times.
I met paratransit and went home. I returned to the surgeon to have my stitches removed from my head. The 60 mgs of the prednisone was making me very sick. I called the surgeon several times about this, what to do and he never called back.
A day later, I had an appointment with my ear, nose and throat doctor, who is independent, he works with Mt. Sinai, and several other hospitals. He is about my age. We get along well.
He asked me about the prednisone. I told him. He said what does Choudhri (neuro surgeon) say. I said he isn't getting back to me. He said, "not getting back to you? "
He tried to call Dr. Choudhri, who wouldn't take his call. He said not to go back to 'Sinai' at all. (in effect, of several long conversations, including question and answer, pretty direct guy). Can't remember if I told him about the "way overboard" opthomologist. I wrote Dr. Choudhri a letter and sent it to him,describing what had happened, that I was pretty alarmed, and this should not be a part of any medical experience.
Ear, nose and throat doctor sent me to his opthomologist, who took medicare for my visit, but doesn't usually, only private insurance. Wonderful doctor. Found white patches on my left eye nerve. He prescribed nexium and another agent, can't remember the name.
Has been difficult since. Have found new doctors.
Am so in agreement with what you have said, polkadot. Education is very important. Doctors have to listen. This is happening younger and younger. Needs to be dealt with. Research results need to be used for treatment of these serious diseases. Thank you for your answer.
wishing you health, all my best, Whittlesey NYC, U.S.
In the last 5 years i have come to the conclusion that the USA really doesn't have much of a grip on PMR and GCA. The UK isn't great - but it is better. I just don't understand why to be honest - unless their conviction is that it's only old ladies - and it IS an illness of the elderly and there are far more women than men who suffer.
Am in agreement. I saw my internist on Friday. He is about my age 61, maybe a few years younger. He was pleased that I was recovering. I asked him about combining AZ with medrol. "Oh, that's fine," he said. "Prednisone is often given to patients with respiratory problems," he said.
We get along well. I thought to myself, 'at this point --let him think that.'
He obviously didn't look into it. I was being seen at the emer. room, because I had pneumonia, a serious bacteria, not a respiratory problem. Prednisone and AZ don't combine well and can cause liver problems. My urine was dark as they warned against. I let this one go, because he is "on board" with lowering the prednisone to as low a dose as possible and understands why I don't want large increases. The literature says that prednisone and AZ really should not be used together. by the time he could have helped with this, Friday, by re-prescribing, I had one more day of AZ. I took it today. believe the pneumonia is getting better. In the past, before the GCA I have had courses of AZ. I believe you take it for 7 days and the next 7 days, it remains working, in your system. so for the next 7 days, I should be getting better. For the future, now that I know this, if I need penicillin, I will ask for a different type, not the quilones as you have well spoken of, or the macrolides. I think the other penicillin is slower, but it will work. don't mind if it's slower, not dealing with extra unreleased prednisone in my body and no liver complications.
Agree with your points on medicine. The method of reduction, you are using, is good and better than just 'dropping'. With American doctors, this is new to them. and first prednisone is the miracle drug that produces a miracle cure. then the drug itself can be a danger. They don't know to get you off the miracle drug, so it goes to you, and the instructions are, "drop the dosage down". yes, but how ? going through the adrenals not really functioning. extremely difficult. the taper is much better. you may never notice that your adrenals may well, not be functioning, fully.
There is research and it needs to be applied, I believe. If you get in a study, you can use the trials drugs, like TOC (can't remember it's full name) which inhibits the growth of killer t cells, which apparently is part of GCA. These may well keep the inflammation coming back, so inhibiting their growth, may be part of dealing with GCA. However, currently the agents used to do this, can cause immune problems. I will hold off on trying this. One doctor said, that since I have experienced Cushingoid symptoms due to medrol, they might think my immune system is not at a point to try this. am in agreement. The research has to be aplied to GCA and PMR. Not just look for something that deals with the symptoms and not the cause. LIke cancer, long gone are the days when only the symptoms are dealt with. They go directly at the cancer, in many situations.
There may be more Americans who are not diagnosed. I have seen the exposed forehead arteries in many in NYC. I don't say anything. They don't look for this and as is obvious with me, for some reason, unless you are 70 + it isn't easy to get a definitive test. Am in agreement with what you have said, I don't know why there is a difference. Thanks PMRPro for your comments. best, Whittlesey
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