Connect
← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Discussion
GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)Comment receiving replies
I was diagnosed with PMR in 2016, though had symptoms for months prior to diagnosis. Went through the wean/flare up cycles of dosing and was doing ok-ish, down to 2mg with moderate pain when I developed GCA; worst headache of my life, acute visual change, could hardly open my mouth due to jaw pain. Started out this year at 60mg prednisone, now down to 20 and still weaning slowly. Felt superhuman initially! Unfortunately I have developed almost every nasty side effect you can get from this drug, hypertension, glaucoma, skin tears, and probably a dab of psychosis depending on who you talk to. I sometimes wonder how I will come out on the other side of this. Having this support group has been extremely helpful. Wish I had found it earlier in my journey.
Blessings to all.
Replies to "I was diagnosed with PMR in 2016, though had symptoms for months prior to diagnosis. Went..."
Hi,
I too developed a lot of severe side effects on prednisone. And then there was all the additional medicines to address the prednisone induced conditions ( diabetes 1ac high, high blood pressure avg 160-170/110, brain fog, leg weakness, severe swelling of face and neck, visual issues, extreme weakness, etc). I lost about four months due to incapacitation. All that was enough justification for switching to biological - Kevzara. I am still weaning off prednisone but after about the third Kevzara shot, I felt many of the symptoms start to subside. And of course my prednisone dose continue to be greatly reduced. Next 1ac test was normal and was able to quit taking some BP meds. Everyone is has a different tolerance for various drugs but please know there are alternatives, especially in my case when prednisone side effects where as bad, if not worse then the underlying condition. Hope you get some relief and I know it is hard to advocate for yourself when feeling bad…there should be a unique solution that works for you. Sending you well wishes 😊
Connect
I am so sorry that you have experienced set backs and side effects that would have made anyone question what their future holds. In addition to the traditional Prednisone treatment, I am looking possibly into adding in (eventually) some type of holistic treatment as well. I will continue to post info as I find out more information.