About

State/Province
AZ

Pages

Member not yet following any Pages.

Posts (11)

Fri, Feb 22 2:38pm · Adjusting to life with temporal arteritis in Stroke & Cerebrovascular Diseases

@amptrooper

This is elderdiana. 3 years ago one night I suddenly went blind in one eye. Then 5 min. later my sight returned. About a month later my jaw ached when chewing. About a week later eye thing happened again. We were on vacation,so on returning home I called my doc. By that time the eye temporary blindness was happening every week or so. He said go to emergency room and they will know what to do. They did many testsover 2 days. Said Maybe I had TMJ in jaw and migrain headach in eye. Did not believe it could be temporal arteritis because I did not have headaches. My own doc said they should have done a biopsy to rule out temp. Arteritis. He insisted I go to another hosp for biopscy. It always says this disease does not start until we are 50. They also say headaches are present. At the first hosp. My sed rate was 47 which should have signaled possible temp. Arteritis, but they said that was because I was old. I was 78 at the time. So you are too young and I am too old. Thanks to my primary care doctor, I eventualky received the treatment I needed. We are all a bit different. I am still under treatment, take my meds, blood tests every 6 weeks.
and doing okay. Good luck with a diagnosis.

Mon, Feb 4 11:22am · Difficult case, several diagnosis, no solution yet in Autoimmune Diseases

This is elderdiana. I do not seem to know how to reply on my device. If this message gets to bt56 I also am being treated for GCA since summer of 2015. I take prednisone and methotrexate, have blood tests every 6 weeks, got down to 3 mg from starting at 60 mg, then back up to 5mg, comin g down again monthly, fingeres crossed. I think I should see another Rhumy for second openion. My doctor of 3 + years wants me on a new drug that is not even approved intravenously for giant cell artrritis. But life goes on.

Nov 11, 2018 · Temporal Arteritis or Giant Cell Arteritis in Autoimmune Diseases

I HAD TEMPORARY BLINDNESS IN ONE EYE AND JAW PAIN BUT AFTER 2 days in hosp. I WAS TOLD NOT GCA. TWO MONTHS LATER after a biopsy in another hosp. Told I have GCA. Started 60 mg. Of prednasone and also methotrexate . One and one half years later down to 3 mg. Then my ESR and c reactive protein tests started going up so Now 6 months later, I am still on 5mg prednisone. I HAVE NEVER HAD much pain, but worry about my vision. It is a struggle. Good to talk to others. Feel not so alone.

Oct 11, 2018 · Polymyalgia rheumatica in Autoimmune Diseases

@evelyn123. I am elderdiana.Three years ago while on vacation, I temporarily lost my vision in right eye, also jaw pain. When I got home my primary care Doc told me to go to.hospital immediately.I had no headache pain. After 2 days of tests, I was told I did not have TA, also called giant cell arteritis, said it was migraine headaches in eye. My doc insisted I should have a biopsy which was done dec 1 2015 and TA was confirmed att another hospital. I WAS PUT ON 60mg of prednasone For 3 months and methotrexate was added. Prednasone was slowly lowered until last march 2018 down to 3 mg. That is when my sed rate and c reactive protein tests began to climb. My rheumatologist wanted me to come in once a month for intravenous injections of Actemra in her office.I REFUSED. Because INTRAVENOUS USE of this drug is not allowef by FDA.for temporal arthritis. Until a few weeks ago I was still on 3 mg and my c reactive protein test hit 27.I called and said I want more prdnazone and was put on 5mg. My blood tests are improving. I HAVE A LONG TIME Primary CARE DOC I CAN TALK TOO in addition to seeing the Rheumatologist, every 6 weeks. I hope you do not have TA it is a complex disease especially with eye involvement but it is .manageable. It is helpful to read Mayo connect about others withf TA. to view their progress and also good to have a good primary care doc in addition to your rumatolagist.

Aug 27, 2018 · New Diagnosis of Polymyalgia Rheumatica (Husband) in Autoimmune Diseases

Thank you. Good idea. My rheumatologist says she has been dealing with this disease for years. This is the first time we are not in agreement, and I too think I need a second opinion,since she is so adamant. I have been seeing her for almost three years with blood tests every 6 weeks.

Aug 27, 2018 · New Diagnosis of Polymyalgia Rheumatica (Husband) in Autoimmune Diseases

Hi John. I am only on 3 mg now, so hopefully I can take a small increase. Also pages 24 through 31 regarding serious side effects in the booklet Actemra., concerns me due to my other medical problems. I feel great, never had any headach,etc. Three years ago, my right eye would go blind, then return to sight 5 min. Or so later. Also jaw discomfort while chewing. My primary care doc told me to go immediately to hosp. In sun city, Az. They did 2 days of testing, and said probably migraine headache starting in eye but not going to head, and jaw wasTMJ. They said was NOT temporal arteritis. Also that my ESR was only 47, and not that high for an old person. My primary doc said I should have had a biopsy and I went to a rummy doc who did some blood tests and ESR was 72 by then, and was sent to another hosp. Where the biopsy confirmed GCA. My vision problems started in August 2015 and got the right diagnosis in Dec. My eye doc said it was remarkable I was not blind. Last Halloween, I was at the Ritter Institute for back surgery. My surgeon said stay off that methotrexate until healed (8 weeks). I did and started having better blood reports. Wanted to stay off that methotrexate, but doc did not agree so still on 10 mg a week. Diana age 81.