I started on my journey of horror 8 months ago with GCA and a script for 60 mg Prednisone, which I dutifully took for 10 weeks and then started a gradual reduction in dosage. I am now down to 6mg but the GCA is still active as indicated on a Doppler Ultrasound a few days ago.
I have been a part of this site since the beginning of my illness and I don't know what or where I would have been without the amazing help and knowledge of all those who contribute.
As many of you can attest to, the side effects of Prednisone can be horrific. Having GCA was life changing for me. I was a vivacious 69 year old Landscape gardener, Tap dancer and netball player, with long thick hair and a size 12 body. 8 months later I am now nothing more than a vegetable, I cannot work, dance or play netball as I have lost almost all of my muscles, suffered huge weight loss, living with a mind that is crazy/psychotic at times and constantly brimming with brain fog. I have the shakes, my skin is thinner than tissue paper, I have gone from low cholesterol to extremely high, my bones, which a dexa scan last year showed were normal are now almost in Osteoporosis, I have a moon face, and Insomnia 24/7.....and because of taking Actemra I have also had to become a hermit, seeing few people and also transferring all these horrible 'side effects' onto my wonderful husband of 52 years. He too also has to live with not only my pain but also the isolation.
The latest side effect to emerge has been the icing on the cake for me - I am now almost bald and the small amount of hair left has the texture and appearance of candy floss.
I must also mention my utter disappointment with virtually every medical professional I have met since diagnosis because they are so ill equipped to deal with GCA and most of them are happy to tell you so. From the GCA sites I am now a part of this is a universal phenomena, resulting in most of us being filled with both disappointment and fear. Mostly our Rheumatologists are having to experiment with their patients to see what drugs/methods work for who.
Along with all of the above very debilitating factors of GCA it has become obvious that family and friends don't have a clue about what their loved ones are suffering every minute of every day, but I don't believe that it is their fault. I believe that it is our fault for not insisting on a change of approach to GCA and Prednisone use. This has bothered me every since diagnosis, when you tell a friend what you have they just say something totally inappropriate because they have no idea what GCA is, or how serious it is. However, if I were to say I have GCA and the treatment is long term Chemotherapy they would immediately understand the implications.
Since going 75% bald my family and friends have been visibly shocked when they see me and ask 'why is this happening to you, I thought it was just an immune condition' ? And my answer is "it is the chemotherapy that has done this to my body"..... and they understand immediately.
Sympathy is the last thing I am looking for but I am looking for understanding and acknowledgement that I have a very damaging and serious rare disease and that is why I have become something of a hermit and cannot join in as I used to.
The dictionary definition of Chemotherapy is "treatment of diseases, especially cancer with the use of chemical agents or drugs".
High dose Prednisone is Chemotherapy and it is what every GCA patient is given.
If we who have this disease want more recognition and hopefully more research to help others in the future I believe we have to stop submitting ourselves to the 'unknown' and start a full blown awareness campaign. When next you see your doctor refer to the treatment you are having as "Chemo", and when you speak to your family or friends again refer to your treatment as "Chemo".
I hope everyone understands where I am going with this. It is just the start of putting GCA at the fore front and not allowing it to be hidden away because it is too difficult.
Thanks for reading.