Giant cell arteritis:I’m afraid and would appreciate any advice

Posted by anya @anya, May 5, 2017

In April of 2015 I was diagnosed with polymyalgia and giant cell arteritis and was put on 60m of prednisone daily.<br />After a month my rheumatologist began a slow taper of the prednisone and added methotrexate to help with the withdrawal but had to discontinue the methotrexate because of side effects. In April of 2016 I was put on monthly infusions of Actemera and tapered to 1m of prednisone daily and was doing well.

However, in Nov I developed stiffness in my neck and shoulders. Prednisone was increased to10m daily. In Jan prednisone was lowered to 9m but has not been lowered since even though doctor says my labs all look perfect.

At this point I'm losing faith in my doctor and not sure how to proceed with treatment. Because I have no family or support system in this country I have no one to discuss this with so I'm hoping someone out there can give me some insight.

I've recently been diagnosed with Sjorgens syndrome and was told treatment was the same as PR and GCA. so nothing further need be done. I'm now dealing with facial pain, fatigue, chronic constipation, swelling in my legs and hands and insomnia.
My recent lab tests show high bilirubin scores, high total neutrophils, plus low eosinophils absolute, low monocytes, and low monocytes absolute. I don't know what all that means but when I question my rheumatologist about it she does nothing to alleviate my fears and just says "your labs all look perfect" and maybe you should see a therapist.

I'm very afraid of what is happening to me and would really appreciate advice from anyone out there with knowledge and information about my health problems.
Thank you
Anya

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

One thing is certain about medical care now. That is, you are your own best care provider. Seems to work best to use the doctors and nurses and techs and labs as supportive resource personnel, which is the general theme of today's med care.The docs do the best they can to protect the disease from the cure, but sometimes they don't quite succeed.

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@tinkerbell

I am interested in connecting with other patients that have Giant Cell Arteritis. I was diagnosed in May 2017 at Mayo Clinic.

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see my: http://frontal-lobe.info/gca/gca.html

Giant Cell Arteritis; One Man's Exciting Experience
GCA - also known as Temporal Arteritis

also in more detail here:
https://www.amazon.com/Giant-Cell-Arteritis-Mans-Exciting-Experience/dp/0931400058/ref=asap_bc?ie=UTF8

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@tinkerbell

I am interested in connecting with other patients that have Giant Cell Arteritis. I was diagnosed in May 2017 at Mayo Clinic.

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Hey Tinkerbell, I was diagnosed with Giant Cell Arteritis (temporal) July 2017 and only last week started seeing a Rheumatologist because my regular doctor seemed to lose interest in my case. I am down to 10 mg Prednisone now from 40 started in July. My new doctor prescribed Methotrexate, in addition to Prednisone,which I am waiting for my insurance to approve.

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@petel

My Mother was sick for months, complaining of fatigue, joint pain, weight loss and then jaw pain. She was seen by her Primary for months and they kept sending her home with Nasal Sprays. It came to a head when my Wife a former Nurse brought my Mother in for an "emergency visit." They had her come in during the lunch hour and began picking on her, saying' "you were just here a few days ago, you're not having a stroke." My Wife asked the P.A. what her diagnosis was and she said, " Congested Jaw." My Wife said she had never heard of such ab ailment. That was the end of their interaction as the P.A. then shut my wife out of the conversation. They basically patted my Mother on the back and said call this weekend if you are not feeling well. Sunday, Father's Day, my Mother was having a little blurry vision out of her Left Eye. I tried to get her to go to the ER, she said , "no, not on Father's Day." I told her if her sight was not better in the morning she was going to the ER. I checked her thru the day Sunday as her team the Red Sox were on TV. Monday morning, not better, not worse. I take her to the ER. Again, they start out with ruling out a Stroke, CAT Scan. But the ER doctor sends for Blood Work with a order to have SED Rate checked, this is not in a normal ER Blood Test. Her SED Rate was 58. He sends us out of the hospital to the Eye Doctor on-call, his office is a block or 2 away. The ER doctor said to go directly there. We were there hours and the Eye doctor kept checking her Eyes and telling me something was wrong and all these bad things that could happen. On his worksheet he had GCA/TA for diagnosis. We leave the check up room and go into an office while he is on phone. He sends us back to hospital for a C-Reactive Protein Test and going out the door asks who my Mother's pharmacy is and then says,"you can pick it up on your way home." No sense of urgency. We did pick up the pills, 80mg of Prednisone daily. That was Monday, Tuesday my Mother wakes up Blind in both Eyes !! Many screw up bu all involved. Her Rheumatologist from the hospital got on her knees and gave my Mother her "Professional Apology", the first 2 time we saw her. She has since moved back to California but did tell me she wrote everything up and the docs are in her former office at the hospital. Of course those files came up missing. The Rheumatologist did call me and tell me everything she wrote about my Mother's lack of timely diagnosis and treatment and it blasted all 3 entities, the Primary, the ER and the Eye specialist. Instead of being sent out of the hospital, why wasn't IV treatment started? Instead of going back to the hospital for a C-Reative Protein Test, a diagnostic tool for something you already had diagnosed, why weren't we sent back to the hospital for IV treatment? I have been back to the hospital trying to recover notes. The "ethics Administrator" told me, this won't go to court, we don't want that and neither do you. Anyway, we have a lawyer and I am doing a little work on my own and need to know how we contact, or if anyone knows a doctor, who would be an expert witness in my Mother's case. We need someone and need the suit to be able to keep her home. She was a vibrant woman who ran the food shelf at Church and did much for our family. Always on the go. Now, she sits in darkness, it's not fair.

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May I ask, how old is your mother and did she have Diabetes or any other health conditions?

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Hi: I would find another Doctor

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I only have the GCA so cannot be of much help. Mayo is wonderful and we make the trip up as often as I need to be seen. It is a 21/2 hour drive.

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@kanaazpereira

Hi @tinkerbell and @dawnmarie,

You may notice that I moved your discussion and combined it with this existing discussion on giant cell arteritis (GCA). As Mentor @johnbishop suggested, I did this because we thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the entire discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@tinkerbell, @dawnmarie, what are your main concerns about your diagnosis?

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Thank you.

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I don’t know Country you are from but I would find another Doctor that can help you. I would try to taper off on the steroids very slowly because that can cause osteoporosis and other problems. Please find another Doctor that actually specializes in your conditions, not all Rheumatologist is equal.

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@geniecm

Input on tapering Prednisone.

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Hi @geniecm, There is an existing discussion on Giant Cell Arteritis where your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the existing discussion here:

> Groups > Polymyalgia Rheumatica (PMR) > Giant cell arteritis
-- https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

I've had 2 occurrences of PMR and was started on 20mg prednisone for both occurrences. The first time it took me 3 years to taper off. The second time it took me 1-1/2 years. My rheumatologist gave me a suggested tapering schedule but I found out it was difficult to stick to it. I went back and forth many times until I was able to taper off. When things were difficult I would cut 1mg tablets in half and decrease or increase dosage by 1/2mg,.

Has your doctor suggested any tapering schedule?

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@geniecm

Input on tapering Prednisone.

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This is Tinkerbell. I had Giant Cell Arteritis and was diagnosed in the Emergency Room at Mayo Clinic in Jacksonville, Florida. I was started on 60 mg. Of prednisone the day I was seen in the Emergency Room. I came down 10 mg. Every 2 weeks. When I got to 20 mg. The problems began. I went down to 17 1/2 mg. And had problems right at the beginning. I had to go back to 20 and then start down at 1 mg. Every 2 weeks. I was on the prednisone for 1 1/2 years. If you have any questions I will try to answer them.

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