No diagnosis yet!!!!!

Bert, well from the symptoms you describe and if, as you say, the steroids definitely helped but the pain has returned when stopping them, that does seem to point to a diagnosis of Polymyalgia.  If your rheumatologist is discounting PMR simply because your ESR and CRP blood tests are normal, then you need a different rheumatologist!  Approaching a quarter of patients with PMR never have raised blood test markers. You need to get in touch with your Dr to see if s/he can hurry along the results of your tests, explain your response to the steroids and request a further supply.  Around 15mg is the usual recommended daily starting dose for PMR, at which dose you can expect to receive about 70% relief in your pain within a few days or even hours.  If it turns out to be something other than PMR that requires different treatment, then the steroids can safely be tapered and stopped during these early days.  Good luck.

 

Bert, that is EXACTLY what happined to me @ 52.

Torn rotator cuff, 2-4 weeks later PMR. Except then, for many reasons, it went undiagnosed, and the PMR went into remission 8 months after 3 orhto surgeries (both shoulders and 1 knee). I was essentially disabled for a year, but the PMR was not as bad as it's last visit 12 years later. (I'm 65).

In 2013,  My rheumatologist denied my "inflamation" because my CRP and ESR were high-normal. Said come back in 3 months. Suffered for 8 weeks. Self diagnosed after reading about lupus, fibromyagia, etc. to the point where I went back to my primary and asked for a week of prednisone. He said only the rheumatologist could prescribe in the plan I was on. I told him that I was coming in to the clinic, and I would "plop myself down in the waiting room and would not move without a trial dose of Prednisone". Told him he would have to call an ambulance.

He gave it to me, 15 mg/day... miraculous.

 One month later, PMR diagnosis confirmed by Head of rheumatology @ Mayo Clinic.

You will find that delayed PMR  diagnosis is very common, more the rule than the exception.

I believe that more often than not PMR is precipatated by a traumatic event, physical or mental. You can read my profile or personal posting to get more info, or ask if you'de like.

Good luck bert, there are some very knowledgeable people here  on this forum. If you have PMR, you have found the best resource!

dare I suggest writing down a diary of events. Onset and changes in all symptoms of anything, what medication taken when, what activity when and after effects, any changes in your behaviour, doctor / rheumatologist / endocrinologist visits, test results, and anything else vaguely relevant. Hopefully things will become less scattered and more clarified for everyone.

Interesting discussion about internet health and medical support forums with long time friend yesterday. Prostate cancer. He's ok now. He stopped looking at internet as it was more scary than helpful. I totally understood.

Diagnosis is a skill which needs experience to hone. Self diagnosis is extremely difficult for many reasons.

I don't understand physicians who don't treat the patient but treat the lab results!!! To me they are just plain stupid!! Sorry but that happened to me as well.

If you have symptoms of PMR (or something) and pred does work well then you DO need a rheumatologist if you have normal blood tests if a GP cannot/will not do the job. If it is PMR it will come under the "atypical" label - one in five patients with PMR have no raised ESR or CRP and a rheumatologist should be aware of that. As Judy says, he is just treating the figures not the patient who is in front of him. If you have the option, go to a different rheumy.

In the UK a GP is perfectly at liberty to prescribe pred for suspected PMR and the "Bristol paper", the link for which you will find in the first post of the link below, was written to aid PCPs in diagnosing and managing PMR:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Surely a PCP can use pred off their own initiative? The suggestions of a diary are good. Perhaps write a letter to the rheumy explaining how it is affecting your day-to-day life might help? One lady did find that made a considerable difference in how her GP responded to her limitations.

"Here in the States, we may not have the option to skip-hop to another rheumatologist, depending on our insurance plans" - I've had this suspicion - but I repeatedly see assertions from US contributors that your system does allow for easy changes from one doctor to another and choice. In the UK it is possible to change but it is hard work! However - obviously the UK system is better in that the basic drug for PMR can be given by a GP! 

I am in the US. Agree that PMR is rarely recognized by docs, at least in my case. Although in hindsight they agreed. 

Got the first PMR symptoms September 2013, after getting a Baker's Cyst on August 4, behind my right knee, after rowing for more than 2 hours or so in a cramped position (stupidly). The cyst ruptured and the PMR symptoms appeared. I went to my internist 3 times. She ran blood tests to rule out Lyme, RA and other possible diseases. I went to the orthopedist about 3 or 4 times, who treated the Bake's cyst, which had caused edema in my lower leg after it ruptured. He was unable to diagnose the PMR pain and stiffness as he was so focused on the knee. I took so much Ibuprofen for the pain that I got a bleeding stomach. I went to a rheumatologist, who determined (wrongly) that I had PMR and prescribed 700 mg of Gabapentin. He also did a battery of tests, which showed an elevated CRP and anemia (from the bleeding) and told me to take Tylenol. He gave me a cortisone injection to the wrist as I had a frozen and swollen middle finger and could not bend it at all. (It helped that). He also sent me to a different orthopedist, who gave me shot of cortisone into the knee (for the cyst) and miraculously, all the PMR pain went away (for about 2 days). I went back to the internist for the stomach pain and enemia, and also to a digestive disease doc for an endoscopy, which showed bleeding. He put me on a diet and prescribed Pantoprazole, which helped the stomach. The PMR got worse and the pain moved to my wrists and knees and I could still barely walk or sit, or get up, etc, etc. and certainly was unable to get out of the bathtub, my husband was helping me to get up off the toilet and out of the bed. I decided that there was no way I had fibromyalgia as the symptoms did not match. I made an appoinment at Johns Hopkins' geriatric center (but had a long wait) and also searched the internet for another rheumatologist that was on my health plan from work. I found a person and made an appointment. Quite by chance, I saw PMR written on her web page as one of the diseases she treated. Having never heard of it, I clicked on it and BINGO! There were the symptoms I had been having for 3 months, described in BW. I was elated. The appointment with her was amazing. I did not tell her what disease I thought I had, but waited for her to diagnose me. She did that nearly immediately after asking me the symptoms and looking over all the bloodwork done and sent me for more bloodwork, but also prescribed 20 mg of Prednisone and told me to call her a week later and if I felt better and to come back 3 weeks later. Within a few days the symptoms got lighter and within 1 week they were GONE!!! My left shoulder was frozen, but the rheumy prescribed PT and that took care of it. I reduced to 15 mg, then to 12.5 (gradually over the next few months) and am now at 5.5. (I cancelled Johns Hopkins after I saw the new Rheumy and had the diagnosis and successful treatment)

Sorry to be so long winded. My insurance, Blue Cross Blue Shield Advantage (BCBS) allows me to go to any primary doctor or specialist or lab on their list. For a specialist on the list, my out of pocket fee is $35. For a primary care doc it is $25. If I go to someone not on their list, it is quite a bit more. It is my choice what I choose to do. Each insurance company has their own way of doing it and a different list of doctors. Both my internist (primary care physician) and rheumy also accept Medicare (our 'National Health Plan for retirees). As a working person age over 65, Medicare is my hospital insurance, but not for Emergency Room visits or procedures done as an outpatient. The BCBC from work covers those and medical visits: lab work, x rays, doctor visits, specialists, procedures etc. For example, the cataract surgery and checkups are covered by the BCBS plan (I pay a $35 fee for the initial visit, the surgery is covered, but I have a hefty fee to pay for the laser that is being used and the lens itself, which corrects astigmatism and for distance. One eye done and having the next one on Tuesday, June 16. BTW both rheumy and Primary care told me to take 10 mg Prednisone on the day of surgery, 10 the day after and then 7.5 the next day and then back to my 5.5.

Either the primary care or specialists can order bloodwork and prescribe Prednisone.

My primary, when I later told her it was PMR, recognized it and corroborates what my rheumy tells me to do. My orthopedist, whom I saw for a broken or rather shattered shoulder (a fall on the ice 3 months into the PMR treatment!!) told me I had had 'a lot going on' with the knee, so he was focused on that and not PMR symptoms. BTW, he treated the shoulder excellently and is really a good surgeon and ortho. I never went back to the original misdiagnosing rheumy.

My lesson from all of this is that a person has to be persistent and proactive. One must ask questions. The internet is a really good tool, if you use reliable sources, such as NIH or Mayo Clinic or Johns Hopkins.

All the best to all! 

 

Hi Bert I keep a very detailed diary of how I feel what meds etc I find it very helpful especially when i have a problem really helpful when reducing pred. I was lucky my Doc nailed yhe diagnosis the first time I went in with the problem This was a minor miracle because she is usually terrible at getting anything right.