- Giant Cell Arteritis (GCA)
- Interviews
Helen's interview
How did all start?
Fall 2015 chest pain, Feb 2016 hypertension, March 2016 cough, nocturnal fever, anorexia, fatigue at that time elevated sed rate and crp, After many lab tests, scans etc. Diagnosed with Aortitis and Systemic Vasculitis - later confirmed as GCA. Celebrex had probably helped to mask or diminish symptoms - in hind site, I had scalp sensitivity and mouth sensitivity, jaw claudation, minor temporal headaches I had shrugged off to stress.
Do you already have a diagnosis? How long did it take you to get it?
2 months
For what medical specialties have you been treated? What has been the most useful specialty for your?
Rheumatology, Pulmonology, Internal Medicine.
Rheumatology
What has been the most useful thing for you so far?
I ended up with a lot of complications and stress on high doses, and time off work from my stressful job was the most helpful, so having Short Term Disability Insurance. Second most useful thing was support group on FB. If you want the most useful thing from the doctors, perhaps that the Internist, Pulmonogist, and Rheum all shared the same record. The PET scan was the most useful thing of all.
What have been your biggest difficulties?
Weight gain from prednisone, sleep apnea from the weight gain, Fatigue at time so that couldn't do everything I wanted to do, emotions from the prednisone.
How has your social and family environment reacted? Have your social or family relationships changed?
No, family and friends has been very supportive and wonderful, even though I feel like some of them really do not understand this invisible disease.
What things have you stopped doing?
For a while I stopped doing pretty much everything including work, once my prednisone got below 20 I started those activities again. I still wish i participated in all the activities I did before becoming sick, but I will soon. Dancing and bicycling.
What do you think about the future?
The way it attacked my aorta I fear early death. Tapering about 1 mg a month right now, so 8 months to get off prednisone. I imagine I will be a thinner more energetic version of the current me.
So far, which years have been the best years in your life? What have you done during them?
The last 8 as I married a man who is extremely supportive.
What would you like to do if you didn’t have your condition?
Take a promotion at work, I have had to step back into a less stressful position due to the disease.
If you had to describe your life in a sentence, what would it be?
My life is full of love from close family and friends.
Finally, what advice would you give to a person in a similar situation?
Hang in there, as you taper off the prednisone, life gets better again.
