How do I get my Rheumatologist to listen ?

Posted by michelle1968 @michelle1968, Feb 5 5:35pm

Hello, I have have had bilateral chronic pain for over 7 years and all the criteria but my Rheumatologist keeps saying I have psoriatic Arthritis.
The first Rheumatologist refused to listen and said I was too young. I am 55 now and symptoms began at 48.
My bloods show I have a seronegative inflammatory disease.
Can anyone help me with this?
What test can I have to confirm ? I have bursitis in both shoulders, Mortons neuromas in my foot and tendinitis in my wrist plus morning stiffness etc.
Thank you

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@dadcue

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.

Jump to this post

You may recall I started out with an extremely acute onset over 2 days involving hand numbness and extreme weakness, along with shoulders, knees, ankles, etc. and sero negative at that point.
Today I found some old labs of ANA results I think are interesting. They are one yr apart in 2016/17 but they were never discussed with me so I’m not sure what conclusions they suggest. But shortly after this I had high liver enzymes and she took me off methotrexate - and I promptly developed antibodies to Humira and had to transition to Enbrel. 2 years later I was found to be Sero positive. So I have RA but I’m still not sure it’s that clean cut.

Anyway if you have an insight to those old labs I’d be interested. I don’t really understand the homogenous vs speckled piece…
Pam

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@pb50

You may recall I started out with an extremely acute onset over 2 days involving hand numbness and extreme weakness, along with shoulders, knees, ankles, etc. and sero negative at that point.
Today I found some old labs of ANA results I think are interesting. They are one yr apart in 2016/17 but they were never discussed with me so I’m not sure what conclusions they suggest. But shortly after this I had high liver enzymes and she took me off methotrexate - and I promptly developed antibodies to Humira and had to transition to Enbrel. 2 years later I was found to be Sero positive. So I have RA but I’m still not sure it’s that clean cut.

Anyway if you have an insight to those old labs I’d be interested. I don’t really understand the homogenous vs speckled piece…
Pam

Jump to this post

I don't have any insight into the ANA results other than a positive result is suggestive of autoimmune disorders in general. However, a postiive ANA result isn't diagnostic of any particular autoimmune disorder. Apparently, people can have a positive ANA and have no autoimmune disorder.
https://rheumatology.org/patients/antinuclear-antibodies-ana

Rheumatoid factor (RF) was the first autoantibody to be discovered in people with RA. Despite the name, however, RF is not specific to RA, and there are many factors that can impact RF lab results.

People with a positive anti-CCP antibody will not have RA, but this test is somewhat more specific for RA than the rheumatoid factor (RF). A positive anti-CCP is much more specific for RA if it is present and it is as conclusive as it gets.

All these tests don't result in a diagnosis with absolute 100% certainty. They are more like pieces of evidence that in conjunction with a physical exam and symptoms which leads to a medical diagnoses until additional evidence later on suggests a different diagnosis.

You were lucky that your rheumatologist took you off methotrexate when you had high liver enzymes. My rheumatologist insisted methotrexate was working for me even when my liver enyzmes where increasing. She said my liver enzymes weren't high enough to cause her any concern.

My concern was the retching every morning which I described as "morning sickness." I blamed it on methotrexate but my rheumtologist said it was unlikely to be methotrexate. I might be nauseated on the day I took my weekly dose of methotrexate but not every morning. When I stopped taking methotrexate the retching stopped so that was enough proof for me.

It was so bad, one morning I asked my wife to call into work for me to tell them I was sick. It was past the time I was supposed to notify work about being sick so I figured they would be angry with me. When I asked my wife if they were mad about the short notice, she said they understood because they could hear me retching in the background over the phone. I felt better after retching and was dressed and ready for work so I probably wasn't as sick as I thought.

A year or so later, I was describing morning sickness while being on methotrexate to another doctor. She said it was understandable because my liver enzymes were elevated. I said she needed to tell that to my rheumatologist.

REPLY
@dadcue

I don't have any insight into the ANA results other than a positive result is suggestive of autoimmune disorders in general. However, a postiive ANA result isn't diagnostic of any particular autoimmune disorder. Apparently, people can have a positive ANA and have no autoimmune disorder.
https://rheumatology.org/patients/antinuclear-antibodies-ana

Rheumatoid factor (RF) was the first autoantibody to be discovered in people with RA. Despite the name, however, RF is not specific to RA, and there are many factors that can impact RF lab results.

People with a positive anti-CCP antibody will not have RA, but this test is somewhat more specific for RA than the rheumatoid factor (RF). A positive anti-CCP is much more specific for RA if it is present and it is as conclusive as it gets.

All these tests don't result in a diagnosis with absolute 100% certainty. They are more like pieces of evidence that in conjunction with a physical exam and symptoms which leads to a medical diagnoses until additional evidence later on suggests a different diagnosis.

You were lucky that your rheumatologist took you off methotrexate when you had high liver enzymes. My rheumatologist insisted methotrexate was working for me even when my liver enyzmes where increasing. She said my liver enzymes weren't high enough to cause her any concern.

My concern was the retching every morning which I described as "morning sickness." I blamed it on methotrexate but my rheumtologist said it was unlikely to be methotrexate. I might be nauseated on the day I took my weekly dose of methotrexate but not every morning. When I stopped taking methotrexate the retching stopped so that was enough proof for me.

It was so bad, one morning I asked my wife to call into work for me to tell them I was sick. It was past the time I was supposed to notify work about being sick so I figured they would be angry with me. When I asked my wife if they were mad about the short notice, she said they understood because they could hear me retching in the background over the phone. I felt better after retching and was dressed and ready for work so I probably wasn't as sick as I thought.

A year or so later, I was describing morning sickness while being on methotrexate to another doctor. She said it was understandable because my liver enzymes were elevated. I said she needed to tell that to my rheumatologist.

Jump to this post

Before my boss hooked me up with an ace Rheumatologist in NYC, the one I had seen at onset a few weeks prior had followed insurance guidelines and had me only on mtx. I threw up constantly and he said I probably had a GI virus.

Well thanks. It didn’t register at that time but the Providence Rheumy did every test known to God and man in the two years I lived there and I haven’t reviewed a lot of them. I’m curious about the “speckled” vs “Homogeneous “ designation on the ANA. I will have to google that.
Thanks again for the look and the dialogue.

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