PMR initial diagnosis: Can there be an underlying disease?
My husband was diagnosed with PMR several years ago and placed on prednisone. It no longer seems to help him. Just wondering, has anyone here been initially diagnosed with PMR only to be re-diagnosed with a different disease or have an underlying disease discovered? Also, does anyone feel they have been diagnosed with PMR because the doctor can't figure out what the problem is and diagnosed you with PMR because you have some of the symptoms of PMR?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I was 44 when diagnosed. There are always outliers in the equation. My ESR and CRP where pretty near normal. I did have pain in my chest too. Every breath I took was painful. Felt like the connective tissue between my ribs was inflamed so when I breathed it caused stretching and pain.
Hello @ohgodithurts, I would like to add my welcome to Connect along with @rkndvm @ltta and others. You will notice that we moved your post to this existing discussion – PMR initial diagnosis: Can there be an underlying disease? where you can meet other members with similar questions and symptoms. I'm happy to read that your doctor has already set you up with a referral to a rheumatologist who normally deals with these types of conditions. It's good that you are asking questions and seeking information. I would recommend making a list of your symptoms and timeline similar to what you have done here and be ready to discuss them when you meet with the rheumatologist. In both my occurrences of PMR, I was questioned about the tenderness in the scalp and/or temples and head area which is an indication of giant cell arteritis (GCA) and condition that is associated with PMR in some people and much more serious.
As patients ourselves with no medical background or experience, we can only share our experience and symptoms with you. How soon is your appointment with the rheumatologist?
I have had PMR symptoms for 9 months but just diagosed a month ago. I am 53. Started 15mg Prednisone for 1 week then 10. Seemed to be ok but never pain free then woke up one morning with significant pain in shoulder and hip girdles. Didn't even exercise the day before. Has anyone had this happen? Seems very random. I'm trying to figure out the triggers of this disease so I can avoid them!
Hi @hfoster, Welcome to Connect. I've had PMR twice and it's currently in remission. Both times I was started at 20mg prednisone which took away the pain completely. The tapering can be tricky and the goal is to listen to your body. I did have episodes of the PMR flaring back up when I tapered too fast or by too much. It took me 3-1/2 years to taper off the first time. The last six months going back and forth between 1mg and 1/2mg until I could stop taking prednisone with little to no pain. The second time it was much easier which I attribute to making some lifestyle changes – healthier eating and more exercise. Here's some information that might help:
Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet
Another thing that helped me a little more the second time around was that I kept a daily pain log along with the dosage amount of prednisone. My rheumatologist gave me the suggestion along with the tapering tip of listening to my body and tapering down only when the pain was under control. For me that was when my pain was less than 2 on a scale of 1 to 10. He also gave me scripts for 2.5mg and 1mg prednisone tablets to make the tapering easier.
Do you keep a daily pain log with the amount of prednisone you took that day?
Seems like your dose of Prednisone may not be enough. I started at 20 mg. in January 2022 and immediately all pain was gone. Prior to this, I was pretty much completely debilitated. I'm in the process of trying to taper now, which is a bit of a roller coaster. 12.5 mg was not good, so I upped it to 13 which seems a little better and now back down to 12.5 for a couple of weeks. I had significant pain from the neck, to the shoulders, to the upper arms, to the hands (right hand looked like a claw and required a split to keep it from curling). Hips, back of thighs and buttocks were excruciating. Could not sit on the toilet and could not do the reach around. It was horrible. Your drop in dosage seems to be too much and so the inflammation is likely building up again. Talk with your GP or Rheumatologist about increasing the dosage for awhile. It takes time for your body to settle in and we MUST listen to our bodies. Everyone is different. Cheers!
Thank you. I am back down to very little pain/discomfort/stiffness now – probably about a 2, which I can definitely live with. It was bad that first day then gradually got better. Took about 5 days. Wondering if that is just how PMR goes? I had been on the 10mg for about 2 weeks when I woke up hurting so badly again. Seems like the Pred was working at that level before that day then it wasn't…now it is. I am just trying to learn more about how this disease flows.
I'm not long at this, but I do find every day is different in some way…so I'm not so sure about a "flow". The Pred will make you feel all well again and then when you start to wean, you find out you are not miraculously healed. As far as the PMR goes, for myself, time will tell. Right now it's manageable, but weaning is the culprit. We're all on the same journey, maybe slightly different paths. All the best to you on yours. ~ Deb
Hi @hfoster, the proper dosage of prednisone is supposed to take care of the pain of PMR , in a way often described as miraculous. After suffering in a way similar to what @mild835 described for about a year, I started at a dosage of 12 mg but was quickly upped to 40 mg when I was found to have Giant Cell Arteritis, the evil sister of PMR. It's been a little over a year now with a couple of bumps in the road, but I'm down to 2.5 mg of prednisone. Did your doctor warn you about the symptoms of GCA? About 30% of those with PMR develop it, and untreated, it can cause blindness or stroke. I wish you the best.
Thank you and sorry to hear about your GCA. My doctors have asked if I have the symptoms of GCA but I do not. I didn't realize such a high percentage of PMR patients get it. Did yours come on quickly?
Have you been evaluated for psoriatic arthritis?