giant cell arteritis

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.
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

Liked by Dee

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.

Liked by Dee

REPLY
@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?

Jump to this post

Thank you.

REPLY

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.

REPLY
Please login or register to post a reply.