Connect
Comment receiving replies
My advise would be to demand that they eliminate asymptomatic GCA. I have a similar story and I kept telling my Rheumy that something else was going on and it was - it was Giant Cell Vasculitis. I could taper down but within a month the pain was back and it always seemed more severe than before. PMR normally runs it's course in say 3 years - and yours and mine did not. I never had a single cranial symptom that would lead a doctor to test for GCA. I had a PET Scan that showed it. I finally went out of state to a major medical facility that routinely sees difficult to diagnose patients to get some action.
Clearly you should be concerned that you do not have something else, possibly in addition to PMR, and whatever the other is could be doing silent damage. This is true with me and I am now dealing with some of the other problems due to untreated GCA. Remember PMR is a default dx, there is no test that can confirm or deny it. It is Dx simply by elimination and so ask them to eliminate GCA. If they are resistant, get a 2nd opinion.
Interestingly my Rheumy at home is not totally onboard with the diagnoses but is willing to treat as recommended by the out of state doctors. I don't know who is right I simply know that I feel more like pre-PMR days than I ever did while on prednisone alone. Getting a second opinion is not only your right it is appropriate when you think that you are not receiving the care you deserve. I had my first PMR symptoms April 2019, pre-Covid.
Replies to "My advise would be to demand that they eliminate asymptomatic GCA. I have a similar story..."
@jabrown0407 That is a great recommendation to get a second opinion. I was diagnosed with PMR in October 2025 and placed on 10mg prednisone. That took care of my pain, but started having other issues about 2 months later. Began having symptoms of GCA, constant headaches, jaw claudication, blurred vision, swollen temporal veins and I even lost vision in my right eye for about 30 seconds. Before the vision issues, I was up to 40mg pred, after the vision stuff I was placed on 60mg pred. My rheumy wanted me to get a temporal artery biopsy. About 2 weeks later I finally found a Vascular surgeon who would do it. I was pretty concerned about getting this procedure done because I really didn't think anything would change, as far as medication and protocol, even if they discovered that I have GCA. The day I went down to get the biopsy done, my Vascular surgeon came in and suggested that I don't do the biopsy. He mentioned that he was looking after my best interest and had the same thoughts I did. For one thing, I have been on prednisone for so long and the possibility of discovering inflammation in the cells in my vein would be greatly reduced. I was relieved that the Dr had the same thoughts as I did. I did not get the biopsy that day. RELIEF!!! My Rheumy now wants me to get an MRA on my chest, neck and brain. I will be having this done this Wednesday! Each MRA scan takes about an hour each! YIKES!!! Anyway, I just have not been all that comfortable with my Rheumy. I have decided to get a second opinion from another Rheumy and am scheduled to visit with him in early April. I am really looking forward to what his thoughts are. I am now on 50mg pred and am slowing tapering down. I will be on 40mg this Friday and continue to drop 10mg every 2 weeks unless complications arise! I feel for everyone that has PMR and or GCA. As people have mentioned, others have no idea what our bodies are going through, this autoimmune disease really sucks, but we will all get through it! It's going to take time, but we all can and will get through this! GOOD LUCK TO ALL OF YOU!!!!!!
Connect
@jabrown0407 Hi. I’m Norwegian and it was a chiropractor that first mentioned PMR as a possible option for my symptoms. GCA was never mentioned as an additional diagnosis when I talked to several Norwegian doctors ( I now live in Spain) and that’s really a scary situation to have to face. I feel really sorry for those with PMR that has to struggle with this🥺🥺
I have lots of additional injuries because of a childhood accident and high level volleyball -that mainly caused lower back and shoulder problems. I had to have a big surgery in my back 16 years ago and also in both shoulders. In addition I have classic Ehler Danlos. So I’m never totally pain free. So that’s makes it even harder to reduce the prednisone dosage. I would like to know what the most common used DMARD medication is, for PMR- besides the first choice Metotrexate..