Paget's disease of the bone and other inflammatory issues

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?

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.

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?

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?

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.

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.

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.

Does Pagets Disease of the Spine induce depression?

Have had chronic pain for years and find myself now taking benzodiazepines for anxiety and Cymbalta for depression. Also have burning mouth syndrome which may or may not have some connection. Do others find their mental health impacted in this way?

Welcome @crikeee. You sound like you've got a lot to handle. I moved your question about Paget's disease of the spine and depression to this existing discussion so that you can connect with @nottoday and @aleciarickabaugh. Click here:
- Paget's disease of the bone and other inflammatory issues https://connect.mayoclinic.org/discussion/pagets-disease-of-the-bone/

When dealing with multiple chronic conditions, it's not surprising that anxiety and depression also become part of your day to day. You're not alone. You will find similar discussions in the Cancer: Managing Symptoms support group here: (https://connect.mayoclinic.org/group/cancer-managing-symptoms/)

In particular you may be interested in these discussions:
- Depression and cancer diagnosis: Today is a rough day https://connect.mayoclinic.org/discussion/depression-and-cancer-diagnosis/
- My body's immune system after cancer https://connect.mayoclinic.org/discussion/my-bodys-immune-system-after-cancer/

Crikeee, when were you diagnosed with Paget's disease? Is it the main cause of your chronic pain?

You might benefit from looking at alternative therapies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4774085/
You can also Goggle "Paget's disease curcumin" to find more information.
Good luck.