PMR initial diagnosis: Can there be an underlying disease?

Hello @irishdancer, I would like to add my welcome to Connect along with @karinaph. You will notice that we merged your post with an existing discussion on the same topic. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the discussion where you can meet other members with similar symptoms and questions and learn what they have shared.

Here's an excerpt from the article below that gives some insight on why PMR can mimic other conditions and be hard to diagnose.
"Feb 28, 2018 - In our medical records (data unpublished), six amongst 265 PMR patients had normal values of both ESR and CRP at diagnosis. The vast majority of these patients had no constitutional manifestations. The reasons why this can be possible in an auto-inflammatory disease are only speculative." -- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

I think your treatment strategy is reasonable and I would probably discuss a taper schedule with your doctor or rheumatologist. I've tried various tapering off schedules during my 2 occurrences of PMR, usually changing dosage on a weekly basis. The first time took me 3-1/2 years to taper off with the last 6 months going between 1/2 mg and 1 mg until I was finally able to stop taking it with no or relatively no pain.

Do you keep a log of your dosage and a pain scale for the day? I found that to be helpful for both of my occurrences of PMR.

Thank you for your support and assistance. I will keep a log of dosage and pain scale. I have not done that yet, as I am just starting to taper this week from 10 mg. to 9 mg. and for the last month have not experienced any pain or discomfort.

My diagnosis was just earlier this year, so my data is limited. I do feel that my diagnosis was a let’s give prednisone and see if it works, since my blood work did not specifically support PMR . And yes, I did respond. With that said, it had been 6 months and any attempt to taper is met by increased symptoms, so I’m back to 15 mg, will try going down next month. I have tried to limit or eliminate gluten, lower sugar intake but I’ve always eaten healthy fresh foods. I do wonder if this is a set of symptoms to a malady that has yet to be clearly identified. Welcome to our immune system, quite complex right?!

My blood work confirmed the pmr diagnosis 9 months ago. I’m doing ok on 2 mg prednisone daily after initial taper down. Having bowel problems alternating from diarrhea to normal but lately waking up with pains like labor contractions. Any thoughts on this?

@kathylovgren, The prednisone may be masking other symptoms that are causing the intermittent diarrhea and abdominal pains. I think this may be serious and if it were me I would contact my doctor right away.

Excerpt from the article below - "...the dramatic clinical response of anorexia, diarrhea, tenesmus, and cramping pains to low doses of prednisone, we believe that his gastrointestinal symptoms may ..."
Giant cell arteritis with polymyalgia rheumatica, loss of vision ... -- https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.1780120211

"Polymyalgia rheumatica is an increasingly common disease in older people, which gives rise to arthralgia and is mainly treated with corticosteroids. ... She had had intermittent diarrhea over the past four weeks but no bleeding or ... She also had left-sided abdominal pains for six months, which were treated ..."
Presentations of perforated colonic pathology in patients with polymyalgia rheumatica: two case reports:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2944188/
Have you discussed the symptoms with your doctor?

Good morning, I 'think' I have PMR!

Let me explain...

In March 20 I had a serious of strange bites come up on my right leg, just below the knee. After 3 weeks of intense itching I went to the Docs to have it checked out. She prescribed me some anti-fungicidal cream (she stated it may have been infected hair follicles), which I used for a day or two and the symptoms\bites went away. However, then came the pain in both hips (possibly joints), both buttocks, which spread to both shoulders and upper arms and associated joints. Also, I lost weight, became fatigued and just didn't feel too good at all. The final nail for me was when both arms at the elbow, one morning, became extremely hot to touch and a red rash appeared. I know I would have to go back to the docs. Also by this time I struggled walking, getting out of cars, limped, hips\buttocks hurt like hell, getting out of bed, putting clothes on (stiff painful joints) and so forth. I was a limping frankenstein! Symptons were worse in mornings but to be fair I still feel the stiffness during the day

So, in I went, series of blood tests(diabetes, liver, kidneys, prostrate markers and so forth) were taken and that included a test for Lymes because I thought it may have been that, due to lifestyle. All came back neg but for very low Folic acid count and 'possibly showing that you had a bacterial blood infection'! There has been NO raised inflammatory markers though! I was given 14 days to treat for possible Lymes before results came back and put on folic supplements.

To cut long story short, I'm om pred because my Doc didn't diagnose PMR, I raised the possibility. It appears here in the UK they aren't bothered getting to the bottom of my condition. I said to him why not try pred and we will see if it helps, it did @10mg. By this time it was June. My Doc isn't supporting me and he has left me to decide on the dosage but I'm concerned as to why I dont have any blood inflammatory markers for this but Pred is working. Only other thing is I appear to be getting more cherry angioma since this flared up.

I'm a 54 year old male whom had in the past, had an active lifestyle.

Thanks for listening

Hello @frankenstein, Welcome to Mayo Clinic Connect. You will notice we moved your post to an existing discussion "PMR initial diagnosis: Can there be an underlying disease?" so that you can meet other members with similar symptoms/questions. If you click the VIEW & REPLY button at the bottom of the email notification, it will take you to the discussion.

There are a couple of other discussions you might be interested in:
- Polymyalgia Rheumatica (PMR): Meet others & Share Your Story: https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/
- PMR and Cancer: https://connect.mayoclinic.org/discussion/pmr-and-cancer/

There is some information I found that may help you learn more about the difficulties in diagnosing PMR and why it's best to see a specialist like a rheumatologist. --- Polymyalgia rheumatica: pitfalls in diagnosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1281460/

You mentioned having more cherry angiomas since the flare up. Here's a 2018 article that has some information - Should I worry about a cherry angioma?: https://www.medicalnewstoday.com/articles/312594

I have no medical background or training but I have had 2 occurrences of PMR that were treated with prednisone starting with a 20 mg dosage. The goal is to control the pain/inflammation with the prednisone and to taper off as soon as possible. The first occurrence of PMR took me 3-1/2 years to taper off, the second time 6 years after it went into remission it took me a year and half to taper off.

Are you able to get a second opinion with a rheumatologist in the UK?

Thanks, at the moment in the UK it appears to be extremely hard to get any sort of further diagnosis due to CV-19. I'm surprised that the GP has not offered to have a rheumatologist have a look and I'd hope that he was able to read into what the blood tests were indicating. I may in the next month arrange a further phone appointment and inquire about a rheumy.

Hi guys!

Been to a GP many times and have an appointment with a Rheumy on Monday, but I'm hoping to get some third, fourth and fifth opinions before going on Prednisone at 31. Any input would be greatly appreciated.

I'm pretty healthy, exorcised frequently before this, and have never had any serious health issues prior to this as well. I did drink too much in my 20's but have all but stopped at this point.

I'll start with a quick walk through of the progression of my symptoms.

3.5 MONTHS AGO

I noticed rash patches had developed all over my scalp. They were causing some serious dandruff -- never had anything like this before. Was worried it might be Psoriasis, but the doc. said it's scalp eczema, which makes sense because I had eczema as a kid.

2.5 MONTHS AGO

Developed Plantir Fascitis in both feed (I'm active, not overweight, and have never had it before in my life). After some rest it went away it my right foot but I basically still can't walk on my left foot.

Started developing pain in my right index finger. Chalked it up to overuse as I work as a developer and, well, that's the finger I click the mouse with. Doc. also said that it was Tendonitis and to just lay off it for a bit. I started using a finger splint and the pain seemed to get a little better after about two weeks, but then...

2 MONTHS AGO

Started developing a tenderness in my upper vertebrae, then it started hurting when I would bend over or get up out of bed. I went to the doctor again and mentioned I use kettle-bells for working out and he said it was probably just a stress injury from that and unrelated to my finger pain/scalp rashes. He told me to lay off the weights for a bit.

Over the course of the next week or two, the pain just kept spreading and getting worse. My spine is tender from about half-way up to the neck now, it's in both of my shoulders, the front of my hip bones, my right wrist, and upper arms. Now my ribs are tender when I press on them as well. It's excruciating to roll over in bed, and takes a concerted effort to sit up and get out of be. I can also hardly put my socks on. The pain in my index finger has subsided somewhat, but I started using my middle finger for the mouse instead and then it swelled up to the size of a sausage, became incredibly painful to bend and literally impossible to bend more than half way -- I've been keeping it in a splint and icing it daily for weeks now.

TREATMENT

Two months ago, when the pain first started really spreading, the doc. gave me a Naproxen prescription and I took two 500mg/day. for a month. It seemed to help somewhat with the pain a few hours after taking it, but only about a 40-50% reduction.

After I ran out of Naproxen, the doc. said we can try and knock it out with a short course of Prednisone -- so I did a week of Prednisone at 40mg for three days and 20mg for four days.

The Prednisone completely relieved my symptoms at first, but by the last day some of the pain had come back and after I stopped it all came back with a vengeance.

Now the doctor has sent off a referral to a Rheumatologist to get a second opinion before starting me on a year+ of Prednisone (the only known effective treatment for PMR).

DIAGNOSE ME

Please, if there are any doctors out there, could you have a look at my labs and see if this diag. makes sense?

The blood work seems to indicate inflammation for sure, and there are no RF factors, but the avg. age of PMR onset is 70, with is being extremely rare in people under 50. Furthermore, the swollen fingers, Plantir Fascitis, and scalp rashes don't seem to be common symptoms of PMR.

Very keen to get any more professional opinions.

I also just had two chest X-rays and an X-ray on my right hand done, as well as a blood test for my calcium levels (in case of hypo/hyperthyroidism -- I read that's a possible differential) and some test for gout (although it's probably definitely not gout as it's all over my body) -- I've attached the X-rays diag. below and will update with the additional bloods as soon as I get them back.

BLOODS

Abnormalities:

ESR: 28mm/hr

CRP: 28mg/L

ANA Titre: 1:80, speckled pattern (doc. said this was essentially nominal)

Platelets: 447 x 10e9/L (again, doc. said this was nothing to worry about)

Full bloods and X-ray diagnosis attached.

I am not a physician, but I am a veterinarian with a “PMR husband.” A good rheumatologist with their battery of tests to rule out other immune-mediated disease is a good plan. 31 seems young for your diagnosis. Be your own advocate! Have a list of questions. Good Luck and please post results.