PMR relapse symptoms

@mwhite6262
Wanted to update my journey now that I finally had my first appointment with the rheumatologist...4 months after my PMR diagnosis! I have been on 40mg prednisone for 4 months. My rheumatologist immediately said I have GCA as well as PMR. I was told the artery biopsy that was performed in was all clear. Apparently not a definitive indicator. Silver lining is I've been in a high protective dose of prednisone all this time. I am blind in one eye from an arterial retinal occlusion so super worried about any risk to my remaining eye! They immediately started me on weekly injections of Tocilizumab (Actemra). Given my history of blood clots on my lungs without anyone understanding the cause they want me to see a hematologist to determine what blood thinner I need to start taking with the least interactions with the injections. GCA apparently increases the risk of bloodclots...I'm learning so much that I'm starting to feel overwhelmed. Having been on prednisone for 4 months I've gained 40 pounds! Now have extremely high blood pressure and am considered pre diabetic. I am still in pain from the shoulders upper arms about a 5 or 6 on a scale of 10. Hip area pain hovers around a 3 until I actually stand or lean ( like over the sink or stove) for more than 10 minutes max...I have to pace myself and do small bursts if activity then sit to recover. But the shoulder and upper body pain is a constant with no relief even with the 40mg of prednisone. This is very difficult and disappointing because I love working in my flower beds and growing veggies both activities are now painful. Hoping the injection will allow successful tapering from the prednisone. My PCP started me on Zepbound injections to get my weight under control. I'm 6'1" and have NEVER weighed more than 180 pounds in 62 years of living...My average weight is 165. (The one time I weighed 180 was right before giving birth!!) I now in 4 months on prednisone have gone from 165 to 205. Folks who haven't seen me in a while have kindly asked what's happened to my face! Since I'm 6'1" alot of the weight gain is "hidden "...but...cannot hide a round face with chunky cheeks! My PCP'S comment was...at least I wasn't overweight when all if this started! That comment was nit very helpful. I'm trying to stay positive, but I do feel exhausted and like I may be developing depression. I'm glad after 4 months I'm finally with the right specialist, but the past 4 months have been absolutely brutal. I hope all things related prednisone are reversible and I hope the new injection of Tocilizumab kicks in and protects my remaining eye. I hope my overall pain level somehow reduces.

@mwhite6262
Wanted to update my journey now that I finally had my first appointment with the rheumatologist...4 months after my PMR diagnosis! I have been on 40mg prednisone for 4 months. My rheumatologist immediately said I have GCA as well as PMR. I was told the artery biopsy that was performed in was all clear. Apparently not a definitive indicator. Silver lining is I've been in a high protective dose of prednisone all this time. I am blind in one eye from an arterial retinal occlusion so super worried about any risk to my remaining eye! They immediately started me on weekly injections of Tocilizumab (Actemra). Given my history of blood clots on my lungs without anyone understanding the cause they want me to see a hematologist to determine what blood thinner I need to start taking with the least interactions with the injections. GCA apparently increases the risk of bloodclots...I'm learning so much that I'm starting to feel overwhelmed. Having been on prednisone for 4 months I've gained 40 pounds! Now have extremely high blood pressure and am considered pre diabetic. I am still in pain from the shoulders upper arms about a 5 or 6 on a scale of 10. Hip area pain hovers around a 3 until I actually stand or lean ( like over the sink or stove) for more than 10 minutes max...I have to pace myself and do small bursts if activity then sit to recover. But the shoulder and upper body pain is a constant with no relief even with the 40mg of prednisone. This is very difficult and disappointing because I love working in my flower beds and growing veggies both activities are now painful. Hoping the injection will allow successful tapering from the prednisone. My PCP started me on Zepbound injections to get my weight under control. I'm 6'1" and have NEVER weighed more than 180 pounds in 62 years of living...My average weight is 165. (The one time I weighed 180 was right before giving birth!!) I now in 4 months on prednisone have gone from 165 to 205. Folks who haven't seen me in a while have kindly asked what's happened to my face! Since I'm 6'1" alot of the weight gain is "hidden "...but...cannot hide a round face with chunky cheeks! My PCP'S comment was...at least I wasn't overweight when all if this started! That comment was nit very helpful. I'm trying to stay positive, but I do feel exhausted and like I may be developing depression. I'm glad after 4 months I'm finally with the right specialist, but the past 4 months have been absolutely brutal. I hope all things related prednisone are reversible and I hope the new injection of Tocilizumab kicks in and protects my remaining eye. I hope my overall pain level somehow reduces.

@mwhite6262
I'm very sorry that you're going through this. 40mg of prednisone should be enough to relieve most if not all of PMR pain. I'd be talking to my doctor about a couple of things. Part of the PMR diagnosis is based on the response to prednisone, but a small percentage of PMR patients do not respond adequately to prednisone. Maybe you are one of them. It is also possible that you have another unknown autoimmune disorder that the hematologist may pick up in to their analysis. Push for answers and then push for the meds to get you relatively pain free in comparison to now. Please don't suffer in silence.

Thank you for the advice. When I told the rhematologist that I was concerned that such a high dosage was no longer giving me full relief of pain he said I likely have caught a virus which would explain the body aches. He did a ton of bloodwork so hopefully he can glean if that's what's driving the pain or if for some reason the prednisone has become less effective. I'm trying to be heard and not dismissed since I have been living with this for 4 months and am really intune with everything my body feels. I'll keep after it for sure. My worry is that he wants to start tapering once I start the injections so I may be unnecessarily anxious about the change.

I'd been off Kevzara for six months and then had symptoms like you describe. My dr put me back on Kevzara, which is working for the most part. The symptoms were slightly different than the original but different than everyday aches and pains.