I didn't write about my GCA journey for a while as the whole process was rather confusing and difficult to understand. But now it's time to share my story because it seems to be very different and I know it's important to learn about the whole spectrum of a disease.
Diagnosed with GCA in January 2017, 67 years old, living in Canada I rather quickly got in touch with a rheumatologist and had a biopsy done. My symptoms were never typical: chronic cough for two years, nausea, temple ache, headache, stiff jaw. The headache and temple ache were never unbearable, but new.
ESR normal, CRP 56, biopsy left negative, 50 mg Prednisone, second worst time in my life, taper in April to 40 mg strong temple ache and CRP went up, 60 mg. Later Methotrexate was added, but the CRP didn't go down. Doctor told me he really doesn't know what is going on in my body because he never had a patient who's CRP didn't go down with the medication I took. In September he decided to take me off the medication 10 mg per week to have a second biopsy done. I followed his advice. No headache, no GCA-symptoms at all, but the cough came back and I suffered from fatigue. CRP 80. Biopsy negative, fatigue to the extreme with laying down resting and sleeping all day long. I didn't even cook anymore, no energy. The fatigue was the worst part in my life and the cough was killing me. Then I had problems with my right eye. The eyelid drooped, moving it was extremly painful and the pupil size differed from the other eye. This lasted for five days and disappeared. The eye specialist suspected Horner syndrome.
I received all kinds of vaccinations- tetanus, flu, pneumonia and shingles- before injection the first Tocilizumab syringe on December 21. It costs us Can$940 for four syringes= two month treatment as Pharmacare denied cost coverage and my private insurance covers only Can$300 per month. So, one month (2 syringes) cost Can$800. Pricy Christmas present. Is it worth it?
My doctor told me patients can have GCA even when two biopsies were negative. My diagnosis is still very atypical.
Back to the question is it worth it?
I injected my first Actemra medication on December 21 at 3.30 pm. No allergic reactions, no side effects that day.
Next morning I felt so much more energy in my whole body, like every single cell got life again. It lasted half a day, I crashed in the afternoon.
December 23 and ever since I'm so much better. The cough seems to get less and my energy level is so much higher. I cook again and do things. I still have to learn to take it slow, but I'm extremely happy I got my life back. It's a miracle and I hoped for a miracle. CRP was 78 the day before injection. Next month will tell.
I know my story goes against all the rules, I sometimes felt like a fake because of this. I still can't be sure about GCA or not, and I hope it's not a placebo effect! And I hope it'll continue to work. Right now I'm just so very grateful. We also applied for financial support from Roche and hope we'll get some.
There is actually not much more to tell, one story of many. But every single word is true, I've lived it
All the best to all of you, Monika
And by the way, my moon face disappeared and I lost already eight pounds because some days my appetite is lacking what seems to help.