GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

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.

I went in for a biopsy, but my numbers were so high off the charts, that they did the removal of the inflamed arteries, in lieu of the biopsy.

OMG! That must have been devastating for you. No one wants to hear they have a problem, nonetheless, a biopsy turning into a major surgery. Then after surgery, you suffered from major pain and a long, long recovery. I'm not a doctor, but I would imagine you suffered from PTSD from the trauma. My thoughts and prayers are with you.

They do remove a section of the artery to study it. It was a painless procedure as the doctor put me under general anesthetic. Virtually no pain afterward either. It's a common procedure when GCA is suspected.

That's good to know. Thank you so much. I'm going to have the biopsy tomorrow. I hate worrying; it's such a waste of time.

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 😊

Thank you so much! I have an appointment this morning with my rheumatologist and want to discuss further treatment plans. He had been confident I could wean off prednisone and hasn't mentioned any biological. Was thinking I had to be on a lower dose before they started? Will approach it today.

Kevzara (sarilumab) is FDA approved for PMR

Actemra (tocilizumab) is FDA approved for GCA

Both of these biologic medications have been used in the past for the treatment of rheumatoid arthritis (RA).

A biologic is considered when a patient is unable to taper down to a lower dose of prednisone. A biologic is also appropriate when a patient has serious side from prednisone.

If you have been on higher doses of prednisone and have side effects from prednisone then either one of these biologic medications would be worth a try.

I have both conditions as well. Diagnosed in Feb 2023
Started at 40 mg down to 10 mg and blood test next week to see where we go from there 🙏🙏

Thank you, am sitting in my rheumatologist office now. After all I've read on this site, guess I'm somewhat surprised it has never been approached.