How do I get my Rheumatologist to listen ?

Welcome @michelle1968, Sorry to hear your rheumatologist isn't listening to you or your symptoms. I was fortunate to get a referral from my primary care doctor to a rheumatologist who did listen and got me started on 20 mg prednisone which took away the pain within a few hours of the first dose. I think what makes it difficult is that PMR can be difficult to diagnose and there is no specific test for PMR and there are quite a few different conditions with symptoms that mimic PMR. Here's more information on the topic.

"There's no specific test for polymyalgia rheumatica, but it's likely that a series of blood tests will be done. Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are blood tests that can be used to check the levels of inflammation in your body."
--- Polymyalgia rheumatica - Diagnosis - NHS: https://www.nhs.uk/conditions/polymyalgia-rheumatica/diagnosis/.
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.

There is a great site that has some tips for planning your conversation with your doctor or in this case a rheumatologist - https://www.patientrevolution.org/tools. Have you thought about seeking help or a second opinion at a teaching hospital or a major health facility like Mayo Clinic?

Psoriatic arthritis is a seronegative inflammatory disease. It is more likely if you have or ever had psoriasis. Do you have psoriasis?

I was diagnosed with reactive arthritis at the age of 32. Reactive arthritis is another type of seronegative inflammatory disease similar to psoriatic arthritis. For me, PMR was diagnosed at the age of 52. The very first question I asked my rheumatologist was, "What happened to reactive arthritis?" My rheumtologist simply said it was unfortunate but I still had reactive arthritis along with PMR.

As hard as it was to comprehend, I gradually accepted I had both PMR and reactive arthritis. Unfortunately, reactive arthritis was overlooked until I was treated with a biologic that targeted the IL-6 cytokine implicated in PMR. As soon as I tapered off prednisone, Reactive arthritis and uveitis flared up again.

You might want to suggest that your IL-6 level be checked although that rarely happens.
https://www.hmpgloballearningnetwork.com/site/frmc/literature-review/comparing-effectiveness-il-6-inhibitors-and-glucocorticoids-treating#:~:text=IL%2D6%20has%20been%20implicated,the%20IL%2D6%20pathway%20effectively.
Targeting the correct inflammation pathway seems more important than the diagnosis. Unfortunately, your diagnosis largely determines your treatment.

Prednisone will help almost any type in inflammatory pain and isn't exclusively used for PMR. Most rheumatologists will want to avoid long term prednisone use so they seem reluctant to diagnose PMR especially when you are younger.

Isn’t psoriatic treated with same drugs as RA? Like Humira and Enbrel usually as entry biologic? although some insurance companies want you to step up to biologics after a trial
Of methotrexate or hydroxychloroquine?

You can develop psoriatic arthritis with minimal signs on your skin.
Are your nails normal? Any scaly itchy scalp? If you have had psoriasis
30 percent of patients can also develop PsA.
There is no definitive test. Ultrasound can demonstrate enthesitis.
In some cases ESR and CRP can also be elevated. Psoriatic arthritis will
also respond when prednisone is tried.
There are screening questionnaires that you can take online such as offered by the NSF. A dermatologist consult can help if your skin findings are not typical.
I had to get another opinion to arrive at a diagnosis and treatment.

Hi
Thank you for replying.
I have no skin issues at all and my nails are normal.
I have had all the bloods done but doesn’t show much.
I do have bilateral shoulder pain and bursitis in both, tenosyvitis in my wrist and nueromas in my foot.
I recently also had Auto Immune Encephalitis but not sure if it’s related.
When on treatment for the encephalitis I had steroids and had no pain at all.
I have morning stiffness, trouble dressing and getting up.
My DNA shows I have Scandinavian decent as my highest percentage also.
I believe without a doubt I have this. I’ve been tried on sulfasalazine and methotrexate with terrible adverse reactions.

Yes ... I think that is true.
https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/the-first-medications-for-psa
"Biologic DMARDs are used if your PsA wasn’t helped with other medicines. If you have severe disease, you may start with a biologic first. The medications are injected at home or given by IV at a clinic. Adalimumab (Humira) is one of the most commonly prescribed for PsA, but there are other choices."

Psoriatic arthritis isn't neglected like some other autoimmune disorders. There are many treatments that are FDA approved for psoriasis and psoriatic arthritis. Most of the treatment options are the same ones that are used for RA.

It is sad that autoimmune disorders like PMR are neglected. The research needed to obtain FDA approval costs a ton of money. It seems the more people who have any given condition --- the more likely the research dollars are spent on those conditions. In other words, the largest share of research dollars goes to those conditions with the largest market.

PMR might be different because people largely want prednisone because of how miraculously it stops the pain. Most rheumatologists realize that long term prednisone treatment comes with many side effects so they don't like to diagnose PMR.

Reactive arthritis isn't very common. It doesn't have any medication that is an FDA approved treatment. Reactive arthritis isn't usually treated with long term prednisone because prednisone doesn't prevent the damage that reactive arthritis causes when it becomes chronic.
https://rarediseases.org/rare-diseases/reactive-arthritis/
Reactive arthritis is called a "close cousin" of RA so it too is treated with the same medications used for RA. Since nothing is an FDA approved treatment for reactive arthritis, everything is considered "experimental" or "off label use" of a medication. Insurance policies usually have a clause that excludes coverage for treatments deemed to be "experimental" especially when the treatment is expensive. They don't care when prednisone is the treatment.

I was lucky to get Actemra approved for use for my diagnosis of PMR. My rheumatologist made the case that I had failed or couldn't tolerate all other alternatives for the treatment of PMR ... most notably methotrexate twice. My rheumatologist further stated that Actemra was FDA approved for GCA so it should work for PMR too. The last criteria was an inability to taper off prednisone and Actemra represented my best chance of ever getting off prednisone.

Humira is FDA approved for uveitis but not reactive arthritis. That was why my ophthalmologist said I should be on Humira. Now my ophthalmologist is saying that Actemra "seems to be working" for me.

It was surprising but Actemra was approved for me for the treatment of PMR. Now Kevzara is FDA approved for PMR. Kevzara will probably corner the market for PMR while Actemra will corner the market for GCA. However, prednisone will probably always be tried first because it is well entrenched as the "only option" for PMR/GCA.

Prednisone treatment costs a lot less than any biologic so insurance companies will want a "documented failure" or significant side effects from prednisone before a biologic is tried.

Hi
I am on to my second rheumatologist now. Had all the bloods done which show very little.
My pain is related to tendons, ligaments and bursa not my bones.
I am seeing my Dr again soon so hopefully he will do a CT or similar to confirm diagnosis.

Thank you.
I googled reactive arthritis and it doesn’t seem to be that. I’ve actually googled everything and the only thing that fits is PR.
I’ve never had psoriasis either.
I have 3 siblings and the older one has no diagnosis but same symptoms and the younger one -50 yrs is having symptoms start.
It started with shoulder pain and not being able to lift them up to hang out washing for example.
Surely X-rays or CT or similar can show where the inflammation is to help diagnose.

Your rheumatologist can also screen your spine for signs of axial spondylitis
which is frequently associated with the Enthesitis that you describe.
There is however a non radiographic type of axial spondyloarthritis which again is seronegative and difficult to diagnose. Family history, screening and testing may eventually lead to your diagnosis.
A trial of a biologic drug could be helpful in your case. Systemic inflammation
associated with autoimmune disease can increase cardiovascular risk and
should be evaluated with a cardiac workup. Keep researching and advocating
for yourself.

Reactive arthritis was diagnosed 20 years before PMR was diagnosed. The main reason PMR was diagnosed was because I couldn't lift my arms without shoulder pain. That was something I had not experienced before. My rheumatologist first asked me if I had joint pain or muscle pain. I was unable to answer because I couldn't distinguish where the pain was coming from or what was causing the pain.

The next question was whether or not the pain was anything I had ever experienced with reactive arthritis. I immediately told my rheumatologist the shoulder pain was completely different. That was basically how PMR was diagnosed.

The difficulty I had being diagnosed with PMR was that I was already taking prednisone. My rheumatologist wanted me to stop prednisone so she could assess my symptoms when I was off prednisone. I could only stay off prednisone for a couple of days but my rheumatologist saw what she needed to see. She said I had both PMR and reactive arthritis. There were two rheumatologists who were evaluating me at the same time. One rheumatologist thought it was a flare of reactive arthritis and didn't want to prescribe prednisone. The other felt strongly that I had developed PMR in addition to reactive arthritis and reluctantly said I would need prednisone for a long time.

Some scans will show where the inflammation is but people with any type of spondyloarthritis will have inflammation in similar places as PMR.
https://rheumatology.org/patients/spondyloarthritis
Except for the spine, most patients with PMR will have inflammation in shoulders and hips rather than the spine.

It takes time for the damage caused by inflammatory arthritis to show up. In the beginning, it is hard to differentiate between PMR and spondyloarthritis. It is common for people who were diagnosed with PMR to have their diagnosis changed to spondyloarthris later on. The reverse is also true, people with spondyloarthitis have their diagnosis changed to PMR. Much of this is determined by age until the arthritic damage starts to show up.

The diagnosis isn't as easy as people think. A rapid response to prednisone is one criteria for PMR but spondyloarthritis and late onset RA (LORA) responds the same way to prednisone.

I think you might have PMR but my opinion doesn't count for much. I'm not a doctor. However, I wouldn't want you to go down the road of long term prednisone use either.

I just hope your rheumatolgist gets it right before prescribing prednisone for PMR. IF your IL-6 level is elevated that might be more evidence for PMR. With any luck you might be treated with Actemra or Kevzara instead of prednisone.