I was diagnosed with GCA in October 2017 and have been on high doses of pred since then including 8 weeks on 100mg daily. I am now down to 40mg daily with no problems reducing. My main symptom is arm pain due to claudication (due to 'arterial wall thickening with luminal narrowing and occlusion of subclavain and axiliary vessels'. I was also started on cyclophosamide in January.
In that time I have had no reduction in arm pain (although no bad side effects or worsening either and no eye symptoms). I have now had 3 specialists (a vascular surgeon, my Rheumy and my ophthalmologist tell me this pain might be permanent due to scaring.
This is starting to feel scary as it is impacting significantly on my enjoyment of life and I wonder about the value of taking these drugs ( I may start Tozilizumabub in April if still no improvement).
Has anyone else found themselves in this position and what was this outcome? Is there still a chance after all this time that things could improve. Its all starting to feel a bit hopeless.
I find this forum a great resource and support. Thank you.
October 2017 to now is very early days in the world of GCA. I do appreciate how uncomfortable life is with the arm claudication - but am mystified by why you would want to stop the medication that may possibly improve the situation. These are not problems where taking a pill for a few weeks effects a cure - little in medicine is really like that.
Perhaps you need to scedule a discussion with at least one of your doctors to clarify what they see ahead - none of us are medics and anyway don't have your notes.
Hello, dirussell. I, too, have GCA. I, too, miss my life pre-GCA. All of us miss that ‘pre-‘ life. ohhhh, how wonderful it would be to have that life back! And how wonderful it WILL be. But, that takes time and like it or not, we aren’t in charge of the clock. The best we can do is accept where we are in the process, learn as much as we can about the disease and the process so we aren’t in the dark, and then adjust our lives so that our focus isn’t what we’ve lost, but what we still have and celebrate that.
You ask the value of taking the meds. i ask if the consequences of not taking them would be any better? Would becoming blind, or having a stroke or aneurism make you pre-GCA life return? Would they make your life easier than now? That is the value of taking these meds — to keep the quality of life you currently have.
It’s early in your treatment and in your grief process. In addition to talking with your primary care physician, it may be of benefit to speak to a mental health worker. You have had a major life change that will likely be with you for some time. There’s no shame in asking for help in working through grief. And you don’t want to find yourself in depression. Best to be pro-active than find yourself fighting from behind.
Best wishes to you. Once the shock wears off and acceptance is attained, life does feel better again. Different, of course, but life is still good.
Gosh how a empathetic word helps! Yes you are right, there is hope still and grief is a big part of what I am feeling. I do long for a shower without pain and the things I took for granted before but there is still so much in my life which is good and that I am grateful for.
I am sorry that you are in constant pain with your arm and that your medics haven’t held out hope for improvement. No wonder you are feeling low and no doubt knocked about by a large dose of steroids. I think someone on your medical team should be addressing this chronic pain, perhaps a referral to a pain clinic is indicated. Be persistent, I feel sure that much can be done. Do take on board what the other members have said. This diagnosis is an unwelcome shock and adjustment is tough at first but the prognosis tends to be pretty good. Stick with us in the meantime.
Yes shock is the word. Things still becoming real I suppose and there is so much that I am fortunate with in that I can still work (part time) and drive my car! I will think about your suggestion and certainly stick with the forum which is invaluable. Thanks so much.
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