1. < Polymyalgia Rheumatica (PMR)

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

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marieameehan | @marieameehan | Nov 24, 2023

I am so sorry Anya, I feel
Your pain !
I was disgnosed wth GCA s few hours ago and I am sad and scared !!
Please anyone out there to offer some advice etc
In anticipation of some connections!
Thank you !

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 24, 2023
In reply to @marieameehan "I am so sorry Anya, I feel Your pain ! I was disgnosed wth GCA s..." + (show)
@marieameehan

I am so sorry Anya, I feel
Your pain !
I was disgnosed wth GCA s few hours ago and I am sad and scared !!
Please anyone out there to offer some advice etc
In anticipation of some connections!
Thank you !

Jump to this post

Hello @marieameehan, I'm not sure @anya is still following Connect as the last time she posted was when she started this discussion. You are not alone being scared when being diagnosed with a new condition like GCA. There is a lot of members with experience to connect with and learn what they have shared. You might want to look through the following discussion started by @novabill as it is more current.
--- Think I have Giant Cell Arteritis (or GCA): https://connect.mayoclinic.org/discussion/think-i-have-gca/

Did your doctor or rheumatologist start you on a treatment?

REPLY
1 reply
marieameehan | @marieameehan | Nov 24, 2023
In reply to @johnbishop "Hello @marieameehan, I'm not sure @anya is still following Connect as the last time she posted..." + (show)
@johnbishop

Hello @marieameehan, I'm not sure @anya is still following Connect as the last time she posted was when she started this discussion. You are not alone being scared when being diagnosed with a new condition like GCA. There is a lot of members with experience to connect with and learn what they have shared. You might want to look through the following discussion started by @novabill as it is more current.
--- Think I have Giant Cell Arteritis (or GCA): https://connect.mayoclinic.org/discussion/think-i-have-gca/

Did your doctor or rheumatologist start you on a treatment?

Jump to this post

No as I have been diagnosed a few hours ago and have yet to reach my Dr.
I guess I have to wait till Monday
Thank you so so much John !

REPLY
tillysam | @tillysam | Nov 25, 2023
In reply to @marieameehan "I am so sorry Anya, I feel Your pain ! I was disgnosed wth GCA s..." + (show)
@marieameehan

I am so sorry Anya, I feel
Your pain !
I was disgnosed wth GCA s few hours ago and I am sad and scared !!
Please anyone out there to offer some advice etc
In anticipation of some connections!
Thank you !

Jump to this post

I feel the most important thing is to get on Prednisone right away before complications set in.
Suggestion: hook up with Healthunlocked.com. It is an informative and supportive group. It is a wonderful adjunct to Mayo.
The best to you.

REPLY
marieameehan | @marieameehan | Nov 26, 2023
In reply to @JustinMcClanahan "Hi @anya and welcome to Connect. You have had quite the journey in the last handful..." + (show)
@JustinMcClanahan

Hi @anya and welcome to Connect. You have had quite the journey in the last handful of years and you have come to the right place to meet some members that know what you are going through.

I would like to invite @crhp194 and @morninglory to this discussion to talk about giant cell arteritis, polymyalgia and their experience with prednisone for those illnesses. They may be able to provide some insight on your concerns with prednisone.

I would also like to invite @barbararene, @charlena, and @jchatchett who have discussed using prednisone for PMR and may also be able to offer some insight on Prednisone.

You may also want to check out the Sjogren's discussion happening on Connect. You can find that here, http://mayocl.in/2gYI8Uv.

@anya, with your diagnoses, it is reasonable to have concerns about your labs. Have you discussed the anxiety you feel about your labs with your physician and requested a more thorough answer on each of your lab results?

Jump to this post

Hi last wek Zi had temporsl biopsy and now I learned I have GCA!!!
I sm filled wth sadness and anxiety as I read about the awful treatments available !!!!
What do I do going forward??
Please help
Thank you
Marie

REPLY
1 reply
tillysam | @tillysam | Nov 26, 2023
In reply to @marieameehan "Hi last wek Zi had temporsl biopsy and now I learned I have GCA!!! I sm..." + (show)
@marieameehan

Hi last wek Zi had temporsl biopsy and now I learned I have GCA!!!
I sm filled wth sadness and anxiety as I read about the awful treatments available !!!!
What do I do going forward??
Please help
Thank you
Marie

Jump to this post

I know, from first hand experience, what it is like getting a diagnosis of GCA. Please try to relax and start taking Prednisone. As time goes on, if you are able, your rheumatologist might off you Actemra and other meds. I suggest that you try them and you might be fortunate that they will work. The treatments are definitely better than losing your eyesight, etc. My best to you.

REPLY
1 reply
marieameehan | @marieameehan | Nov 26, 2023
In reply to @tinkerbell "This is Tinkerbell. I had Giant Cell Arteritis and was diagnosed in the Emergency Room at..." + (show)
@tinkerbell

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.

Jump to this post

I have just been diagnosed with GCA.
Had you PMR prior?
How are your bones doing ?
Did Mayo suggest Actemra or Methotrexste ???
I have a panicky feeling and Inappreciate any input !
How long did it take ti get your first Appt at Mayo?
Thank you so much fortelling your story

REPLY
marieameehan | @marieameehan | Nov 26, 2023
In reply to @tillysam "I know, from first hand experience, what it is like getting a diagnosis of GCA. Please..." + (show)
@tillysam

I know, from first hand experience, what it is like getting a diagnosis of GCA. Please try to relax and start taking Prednisone. As time goes on, if you are able, your rheumatologist might off you Actemra and other meds. I suggest that you try them and you might be fortunate that they will work. The treatments are definitely better than losing your eyesight, etc. My best to you.

Jump to this post

Thank you so much !

REPLY
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