PMR Symptoms, out of the ordinary?
Posted , 15 users are following.
Hello, am new and hoping to get some feedback as I have felt so lost before finding this ….
I was elated when I came across this site to finally find others that faced some of the same challenges I have since being diagnosed with PMR in August 2011. It came on suddenly. In fact the first diagnosis was an encapsulated shoulder, the right shoulder aching terribly and losing range of motion, requiring physical therapy. However within days my left shoulder also ached, but it was part of the more moving aching discomfort that also went to my neck, upper back, hips, tops of my thighs, buttocks, knees, shins, top of my feet, ankles, forearms, wrists, and top of my hands. It was uncomfortable to drive keeping my knees or ankles in the same position for even 20 minutes. I also found it uncomfortable to cross my legs at my shins or ankles on top of one another as the pressure was unbearable.
I have had 2 Rheumatologists treat me. The first diagnosed me and began me on 15 mg of prednisone which made me a new woman. This went well until this doctor wanted me to begin going down on the prednisone and had me try 10 mg, which brought about a relapse. His answer was pain management for further help. I switched Rheumatologists and the new one had a slower approach for going down on the prednisone. I have worked out regularly for years, when the shoulder began the physical therapists had told me I wouldn’t lift weights and workout the same again. This new doctor told me to go ahead and workout as much as I felt I could. I did well until I tried to go below 2.5 mg. This is the third time I’ve tried, and by the third day I go into relapse. My doctor gives me a shot but it takes better than a week for me to get back to where I had been.
The relapses seem harder now, the discomfort seems turned up higher. The fatigue comes over me like a veil and the appetite disappears. I live alone with my big pup so this isn’t always easy. My concern is that I have a lot of other body parts that are involved, I’ve seen some posts on this site that touch on them but my discomfort areas seem much more widespread (areas listed above). The doctor had brought up fibromyalgia but she also stated that those symptoms are not eased by prednisone, and all my symptoms go away when the higher amounts of prednisone are in my system. Does anyone else experience the same? Also, I do not experience any real stiffness in the morning, my discomfort actually gets worse the more I am upright. I’ve had my body scanned, its not any kind of back or hip issue, all that moves fine, I can exercise, twist and turn with no pain. It’s a deep, moving ache…mostly constant in the shoulder, upper back. Especially now as I’m still coming around from the last attempt at 2 mg of prednisone.
Thank you for reading this and allowing me to be a part of your inner most thoughts. Have a joyful day.
0 likes, 37 replies
BeckyL
Posted
I found a new rheumatologist who also is an allergist, interesting combination. She is much more indepth than any other I've been to. She told me that PMR runs a course in the body for 3 yrs, rather than the 1 a previous rheumatologist had forced on me. I had tried to go from 5 mg of prednisone under the direction of my primary doc prior to seeing a rheumatologist to 4 mg but had a major relapse that to this day symptoms cannot be explained. It ended me up in the hospital with an extreme pressure headache anytime I sat on my tailbone or laid down on either hip or midback. I even had double vision when sitting. They gave me a spinal tap to test for meningitis that gave me some relief from the pressure for a few hours, which they cannot explain. This eased up after awhile on pain meds, they sent me home only to have a large burning pain in my mid back flare up, not skeletal but around the lungs, back in the hospital, again could not figure why. That pain stayed around for about 3 months. Needless to say the primary sent me to the rheumatologist and refused to change anything on prednisone again.
The new testing the rheumatologist finds is that I continue to have mono. The past infection numbers stay high so she feels that the PMR won't clear because of the past infection, so she is treating me with anitviral meds for 6 months trying to lower that number. She also has me on methotrexate with hopes that she can begin to wean me off the prednisone at the end of the antiviral meds.
Meanwhile, inflammation areas grow....sinus sprays with steroids are required or my face is visibly swollen and all my teeth will hurt. I have times where my jaws hurt but my dentist tells me it is not TMJ....it comes and goes, I find using a mouthgard (one of the cheap football ones) helps with the temporary flare up. I too have had uticaria issues, only I'm told its physical...I mostly get it from heat - hot showers or my body getting overheated - great living in Florida. This is all new. So is the numbness and tingling in my arms and hands. My rheumatologist has sent me to PT for this. Still no other skeletal type complaints.
I still don't want to give up the prednisone...only because I remember the flareup pain and pre-prednisone discomfort all too well and feel much better without it. My rheumatologist says that she is retesting me for some of the arthritiis' this year as she finds that as much as 80% of patients test negative the first year or so for things and later test positive. Cold damp weather bothers my hands and feet...course she also says I have fibromyalgia and CFS. I say stick a pin in it and we'll worry about it later!
Hope y'all are getting to feeling good and finding happiness. Have a great day!
jessica21442 BeckyL
Posted
I know this is an old post, but I'm looking to get into contact with you! Your pain sounds so familiar with mine! I couldn't believe it! Like you, I have so much pain everywhere. I just recently got diagnosed with PMR, possibly misdiagnosed with fibromyalgia. But then again the doctor thinks I may have fibromyositis, too?!?!? I have been in pain for 11years on right side. Went into my left arm and hip, butt legs in last 4 years! I hope you are still on here or I can get ahold of you. Curious to what has happened or what was your official diagnosis!!!
amber4275 BeckyL
Posted
I was just diagnosed with PMR last month. It's been a roller coaster ride. It came all of a sudden. The pain was excruciating!! I remember the day I went to the ER. I couldn't do anything but cry because the pain was so bad. They said it was an arthritic flare up. I knew better because I was already suffering with osteoarthritis. I went to my doctor and got looked at. That's when he gave me the diagnosis. I came home and read up on it. I'm only 42 yrs old. They say my case is very rare. Anyway, I was started on 40 mg of prednisone. The side effects were so unbearable that I ended up in the hospital. He quickly tapered me down to 20mg. I went to the doctor Wednesday, abd he tapered me down to 10mg. It seems like the side effects from the prednisone is just as bad as the PMR.
EileenH amber4275
Posted
Welcome to the club no-one wants to belong to!
"It seems like the side effects from the prednisone is just as bad as the PMR."
Not when used properly. 40mg was far too high a dose for PMR - the Recommendations say "the lowest effective dose in the 12.5 - 25mg". 40mg is a dose for GCA and then you don't care what the side effects are - the alternative is to risk going blind. I really don't understand why doctors don't look at the guidelines. None of them would say 40mg for pMR, whatever age you are.
As for your case being very rare, yes, it is very unusual for PMR to be diagnosed in under 50s. That isn't, however, the same as it not happening in 40+ year olds. The charities believe that there are many people not diagnosed because the doctors are so fixated on "over 50" and so refuse to consider it. We believe that there a lot of misdiagnosed patients, told they are "depressed", have "fibromyalgia", somatism or just palin "it's all in your head".
Is 10mg still managing the symptoms? From here on you really do need to go more slowly. You aren't reducing relentlessly to zero, you are looking or the lowest dose that gives the same level of relief that these early doses did.
PMR lasts from 2 to 6 years for 75% of patients. A few of us have it for much longer. But it is perfectly possible to live an almost normal life if you are careful and don't overdo things. The pred has "cured" nothing, it is managing the symptoms until the autoimmune part of the disease burns out and goes into remission - so don't try any more heroic reductions, 10% of the current dose at a time is recommended. Even that is too much for some people.
I suggest you post on a new thread. This one is very old and few people currently on the forum will see it. You will get lots of responses if you do start a new one.