Increasing unrelenting pain - PMR?

Hi, I’m sorry about your unresponsive pain, and I hope you have figured something out by now. What is your pain Effer in your neck, shoulders, and hips? If not, then I would certainly wonder if I was misdiagnosed. If you increase the dosage of prednisone and the pain doesn’t resolve, and that is also indicative and it’s some thing other than PMR in most professionals opinions from what I’ve read.

Regarding your knee pain and the doctor telling you you have arthritis in your hip, the knee is a common spot for referred pain from the hip:

“If you have a problem with your hip joint you may feel pain in the groin, down the front of the leg and in the knee. Sometimes knee pain is the only sign of a hip problem – this is called referred pain or radiated pain and is fairly common.” (From the website Versus Arthritis.)

*Was your pain ever in

Hello,
This hurricane has been So scary, happy to hear you are safe.
My path sounds similar to yours. I was on 15 mg for 2 weeks and suffering from pain daily. Pain was mostly in my thighs and calf’s.
My doctor was worried I may not have PMR because the 15 mg starting dose is traditionally prescribed and effective. We upped to 30 mg. And she ordered
a MRI of both femurs to see if there was a muscle infection . Myostitis causes weakness in thigh/calf mussels. The thighs were negative but now I am going back for a MRI of the calf’s. because there was slight inflammation that they could not see.
If you get a MRI insist on the entire leg! I had asked but was told it wasn’t needed. Listen to your little voice
In Los Angeles there is a back up and the wait is 3 weeks…… for a MRI. I have to wait to the end of October for the calf, Very frustrating.
Once on the 30 mg Prednisone it took about 2 weeks and I was pain free. I was on 30 for 23 days.
Then went to 25
I am dosing down, slowly and now at 17.5 and doing well.
This journey has been almost 3 months
Still no real diagnosis, but no pain.
In my experience I feel I have to listen to my body, read as much published medical journals and stand up to my doctors. I have seen a neurologist, infectious disease and endocrinologist (for the Prednisone onset of diabetes)
It is not easy and so much is unknown about PMR
Wishing you the best, Good luck!
Debbie

I may be in the minority here, but it seems to me that your rheumatologist is being a bit rigid. My PMR only began to improve when my dr increased my dosage to 40mg/day. That is an unusually high dose, but she said that it's not unheard of in particularly severe cases. The minute I started 40mg, the pain went away. I'm hoping to begin a very slow taper soon. My recommendation would be to get a second opinion, if there's another rheumatologist in your area you could see. Best of luck.

Thanks for your reply. I agree with your thought that my rheumatologist is too rigid. Unfortunately there are no others within 500 km so I have to stick with him. My Family doctor is wonderful and I will be seeing her asap. I am even beginning to doubt my diagnosis as this pain I have now has not moved at LL. It is in my groin and right leg and is increasing to the point where I am truly unable to weight bare with confidence, walk or sleep.

I totally agree! So many mixed thoughts on how /when /what to do for pain!My goal is just to have a s good a quality of life that I can. I am 75 years old/ young!

@elizabethjoan I have never believed my PMR diagnosis from the first time I was told that was my problem. As a result I have spent time doing a lot of research and seen several doctors and had more tests run - here are some of the non-PMR real problems found - please consider asking your doctor about theses.

First - an impingement between my femur and my pelvis, actually a bilateral impingement. The right side was more significant than the left. The solution is to stand, walk and sit with your feet and knees a hip's width apart. Within a week the hip pain was noticeably improved - not gone but improved. I call it "Walk like a man". It really helped - no pills, no therapy, nothing except not keeping yours knees together.

Second - I now need right shoulder replacement surgery. I had right shoulder pain and even frozen shoulder that my PCP and Rheumy attributed to PMR, not me. I went to my Ortho and in about 6 months of PT and home exercises he did the MRI that identified several real physical problems in my right shoulder that require a surgical solution. This causes left shoulder pain due to compensation. I received a steroid injection in my right shoulder that has helped immensely. My Ortho said that injections are a non-surgical alternative until they no longer work.

Third - I had a robotic hysterectomy September 1st of this year. After 3 and a half years of chasing the non-PMR sources of my problems I had sudden disabling abdominal pain in my right lower abdomen. Without testing your first thought would be an appendicitis. An abdominal MRI with contrast revealed questionable growths in my female organs thus a hysterectomy to remove everything. Six weeks later much of my abdominal pain is diminishing, I plan to give my body 3-4 months to recover from surgery and correct any problems the female tumors were causing. Fingers crossed this resolves all of my "hip girdle" pain. I am 78 years young and had not had a Pap Smear in 5 years or a pelvic exam in 10 years. My gynecological surgeon did do a pelvic and said he could not feel anything. One tumor was a little larger than a golf ball. I had 4-5 separate tumors.

Fourth - I will be seeing my 5th Hematologist the first of November. One retired. When he heard about my case from a friend he requested to see me. I have chronic anemia with no known cause. On Mayo Clinic Connect I noticed that others with a PMR diagnosis who also have chronic anemia report that the anemia is controlled with their prednisone med. I agreed to take 5mg prednisone and indeed the anemia went away. Went off of it once the abdominal tumors were found, anemia returned. The new hematologist believes the anemia is caused by a rear form of leukemia that was not even diagnosable 3 years ago. We will see what he can find.

The journey continues.

I hope this note helps you believe enough to listen to your body and advocate for what your mind and body are telling you.

You certainly have had a lot of challenges. It seems you are able to deal with all of them but how unfortunate. Thanks for sharing the information and knowledge you have gained. Hopefully your journey will get easier.

Thanks for your comments. My deepest hope is that other patients on Mayo Clinic Connect will learn and benefit from my sharing my journey.
My other hope is that my Rheumy and PCP, who are willing to pile on, learn that this behavior does not do any favors for their patients. Personally I believe it is failing the first part of the Hippocratic Oath of Do No Harm. It is my opinion that piling on a default diagnosis is dangerous to the health of the patient. I believe if I had simply taken 20-30 mg of prednisone a day as they suggested in March 2020 I would be worse off than I am today.
I am becoming a firm believer that more screening tests need to be run before a diagnosis of PMR is legit. Many of these tests are currently not in the domain of a Rheumy and possibly they should be or the Rheumy should send you for clearance before the PMR diagnosis.
Default diagnosis all are dangerous. They lead to treatments that might well hide other symptoms of more serious problems. Certainly PMR treatment hides symptoms. Then think about the side effects of the treatment. Scary if you ask me. Both patients and doctors are accountable. Too much emphasis on pain free living = medical success. Not that simple.

I completely understand: at my worst point, I was unable to walk without the use of my 88-yr-old mother's walker. It was agony. I'm not sure that you can know for sure if the diagnosis is correct unless/until you try a higher dose of prednisone. They started me at 20mg which did nothing at all to touch the pain; only when they bumped me up to 40mg did it resolve--and it disappeared literally within hours. It was like a miracle.

Do you by any chance have a neurologist within reasonable distance? My neurologist (whom I was initially seeing for thunderclap headache) also treats PMR because of its connection to GCA. She's very knowledgable about it and has gotten me through the worst. If you have access to a neurologist, it might be worth a visit. My neuro is over an hour away, but it's worth it. You might also find that you could see a neuro a few times and they could advise your GP on treatment. I hope you find a good solution soon and that your pain resolves quickly.