Paget's disease of the bone and other inflammatory issues

Posted by nottoday @nottoday, May 27 8:57am

Anybody with PDB out there? My ALP just jumped from 70 to 110. I am having extreme ankle joint pain and swelling and other joint mild swelling/pain. I also was just told I have mediastinal adenopathy.

For those with pagets did your AP go up with other inflammatory processes?
I dont know if my pagets is coming out of remission or if the lab is triggered by the inflammation elsewhere

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Swollen painful joints dry cough and SOB for a couple weeks. CT shows bilateral hilar nodes, subcarinal node, and pretracheal node.

It. Hilar and subcarinal are the largest at 2.3ish.

D-dimer is high
CRP is high
Sed rate at high normal
Angiotensin converting enzyme 83 (high normal)

What the heck!!

I am going nuts.

I am hopefully going to get a biopsy next week I wish it was sooner.

Does this sound familiar to anyone else's story?

REPLY

A few months ago I had a high CCP with sore joints. I was told that because the sed rate wasnt high and the RA factor was not present that I didnt have RA.
Now months later I have extreme joint pain and swelling. I went to the ed for torodol and steroids and they did a CT because of dry cough ( I thought it was allergies)
I was told I have mediastinal adenopathy. I was sent to an oncology navigator and I am waiting for a biopsy.

I now have high d-dimer and CRP. And the sed rate went up from <10 to 20. My ankles are so sore I cannot walk and swollen I cannot put my shoes on. Elbows and wrist are not as bad but I feel it.

Has anyone had this experience? I wonder if my adenopathy was initiated by undiagnosed RA or if the inflamed joints are secondary to the adenopathy.

REPLY

Hi @nottoday. It sounds like you have a lot going on and are searching for answers in several different places. You'll notice that I merged your 3 posts into one discussion that appears in the Autoimmune Diseases group as well as the Bones, Joints & Muscles group. I did this so you can easily connect with others who may have had similar issues and so you can gather insights from others in one place.

I'd like to bring @oumike into the discussion as he has experience with Paget's disease. @pattymac @megansims may be able to offer some insights about mediastinal lymphadenopathy. And @johnbishop is familiar with inflammatory issues and autoimmune conditions.

@nottoday, what specialists did the testing? Are the investigations being led by oncology at the moment?

REPLY
@nottoday

A few months ago I had a high CCP with sore joints. I was told that because the sed rate wasnt high and the RA factor was not present that I didnt have RA.
Now months later I have extreme joint pain and swelling. I went to the ed for torodol and steroids and they did a CT because of dry cough ( I thought it was allergies)
I was told I have mediastinal adenopathy. I was sent to an oncology navigator and I am waiting for a biopsy.

I now have high d-dimer and CRP. And the sed rate went up from <10 to 20. My ankles are so sore I cannot walk and swollen I cannot put my shoes on. Elbows and wrist are not as bad but I feel it.

Has anyone had this experience? I wonder if my adenopathy was initiated by undiagnosed RA or if the inflamed joints are secondary to the adenopathy.

Jump to this post

Hi @nottoday, I've had 2 occurrences of polymyalgia rheumatica which also has some of the symptoms like inflamed joints and associated pain but it sounds like you might have a lot more going on. According to this article I found, RA can be one of the underlying causes of adenopathy — What Causes Adenopathy and How Is It Treated?: https://www.healthline.com/health/adenopathy

Are you able to ask your doctor about the possibility of RA or other condition as a cause of your adenopathy?

REPLY
@johnbishop

Hi @nottoday, I've had 2 occurrences of polymyalgia rheumatica which also has some of the symptoms like inflamed joints and associated pain but it sounds like you might have a lot more going on. According to this article I found, RA can be one of the underlying causes of adenopathy — What Causes Adenopathy and How Is It Treated?: https://www.healthline.com/health/adenopathy

Are you able to ask your doctor about the possibility of RA or other condition as a cause of your adenopathy?

Jump to this post

Thank you, I have told my doc this concerns. They do t want to do the bloodeork testing the want wait and see what the biopsy says. I understand that.

REPLY
@colleenyoung

Hi @nottoday. It sounds like you have a lot going on and are searching for answers in several different places. You'll notice that I merged your 3 posts into one discussion that appears in the Autoimmune Diseases group as well as the Bones, Joints & Muscles group. I did this so you can easily connect with others who may have had similar issues and so you can gather insights from others in one place.

I'd like to bring @oumike into the discussion as he has experience with Paget's disease. @pattymac @megansims may be able to offer some insights about mediastinal lymphadenopathy. And @johnbishop is familiar with inflammatory issues and autoimmune conditions.

@nottoday, what specialists did the testing? Are the investigations being led by oncology at the moment?

Jump to this post

Primary or family doc initially. I had a referral for rheumatology but it is difficult to get an appointment.
Now, with the newest findings I am seeing the oncology department and the biopsy will be by a pulmonologist.

I am seeking out similiar cases. I have tried to stop researching for a while but I cant.

REPLY
@nottoday

A few months ago I had a high CCP with sore joints. I was told that because the sed rate wasnt high and the RA factor was not present that I didnt have RA.
Now months later I have extreme joint pain and swelling. I went to the ed for torodol and steroids and they did a CT because of dry cough ( I thought it was allergies)
I was told I have mediastinal adenopathy. I was sent to an oncology navigator and I am waiting for a biopsy.

I now have high d-dimer and CRP. And the sed rate went up from <10 to 20. My ankles are so sore I cannot walk and swollen I cannot put my shoes on. Elbows and wrist are not as bad but I feel it.

Has anyone had this experience? I wonder if my adenopathy was initiated by undiagnosed RA or if the inflamed joints are secondary to the adenopathy.

Jump to this post

I have some similar issues. I have all the symptoms of RA but all my tests were normal until i received a positive paraneoplastic autoimmune antibody but it's dismissed because it's link to cancer is questionable. But i also had a very high ANA and finally after 2 yrs of swollen hands my sed rate was momentarily elevated but only a 37. I can barely use my hands anymore and some days i feel like I got hit by a truck. I recently started to develop some lung nodules which i feel is leading to a sarcoid diagnosis since several family members had it. sarcoidosis can cause those kinds of symptoms if its skeletal sarcoid.

REPLY
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