Paget's disease of the bone and other inflammatory issues

Posted by nottoday @nottoday, May 27, 2022

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 Cancer Support Group.

@crikeee

Greetings Colleen, sorry for the delay but I'm just getting used to this site. An MRI in 2015 was the first indicator of my Pagets. I am now 68. It is the main source of my chronic pain but Burning Mouth Syndrome gives it a good chase.
Hope that the subject of Pagets gathers more momentum and particularised attention so that those affected can benefit from a widening pool of information.
Cheers.

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@crikeee, @colleenyoung, @johnbishop, and all...Well, hello everyone. I've been absent from this wonderful collection of Connect Friends for several months due to my own health issues and my son's problems. We're in a fairly calm state presently....the normal roller-coaster of this life, so I'm checking in for a new illness and finding you here.

I was diagnosed with Paget's Disease of the skull last week. Goody. This came at me out of the blue and isn't a fun thought. A month or so prior to seeing my PCP for a follow-up after bloodwork and an abdominal CT, I noticed a ridge in my skull from my forehead to the top of my head. It causes my skull to ache, not a headache, a skull ache. It's new and has gotten deeper, and more pronounced, and now another one developed about an inch to the left.

He took one look and sent me for X-rays and more bloodwork. We haven't discussed this to date, but I'll chat with him soon for direction as to how to move ahead. It's obviously worsening pretty quickly and I noticed the cheekbones on both sides of my face are flattened, probably from the nightly bi-pap headgear I wear. I ordered new headgear to wear the hose in front of my face, using the same nasal pillow, rather than on top as now. It won't put as much pressure on my head or face, so hopefully will stop the facial structural changes. It's become uncomfortable the last few months, I suppose from the Paget's intrusion.

The headgear isn't causing the skull ridges, so I'm praying there's some medication I can tolerate to slow the skull changes. It's very uncomfortable, and painful at times. I take new pain relief, CBD/ CBG with multiple herbs to relieve pain. I just found this company and product, thankfully, that works for me.

From the little research I've done, the little information available...so what's new???... I see there are a few possible treatments for active Paget's Disease. I don't know if it's contributing to the increased pelvic/hip pain I'm experiencing, but suppose we'll know that soon.

Colleen, I'm going now to link the information you listed above. I want more information. Knowledge is key to dealing with these weird illnesses that keep coming my way, but I am getting older, 76 now, and have far less energy due to the iron/ferritin deficiency that drains me of oxygen and energy. Can't keep that stupid ferritin level up to 70 for more than a couple of months, immediately following IV iron infusions. Currently, my saturation level is low, and TIBC, UIBC, and Transferritin levels are very high. So, here we go again.

With all this and everything else in my life, I'm doing fairly well. My attitude is pretty good, possibly helped by the MM I take at night for sleep and anxiety relief and the new pain relief supplement I take. Surely, they do help, but I've worked hard to improve my mental state. I'm working through the causes of PTSD and other emotional issues and have less depression and anxiety. My son and I are striving to make some happy memories now that he's finally getting help from the University of Florida Movement Disorder Clinic in Gainesville. He's having some better moments as he works through his health journey. So, we decided to work hard to make good memories before we can't before one of us moves on from this earth. To peace...

Well, my friends, that's what's new and I'm off now to learn more about Paget's Disease. I thank you again and again for your precious support over the last few years and urge everyone on this site to share with Connect folks to learn and move forward in your health journey. The friends you make here are unlike any I've ever enjoyed. It's a remarkable place to receive information, share with others who understand, to give and receive support.

Blessings all...Elizabeth

REPLY
@colleenyoung

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?

Jump to this post

Greetings Colleen, sorry for the delay but I'm just getting used to this site. An MRI in 2015 was the first indicator of my Pagets. I am now 68. It is the main source of my chronic pain but Burning Mouth Syndrome gives it a good chase.
Hope that the subject of Pagets gathers more momentum and particularised attention so that those affected can benefit from a widening pool of information.
Cheers.

REPLY

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.

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@crikeee

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?

Jump to this post

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?

REPLY

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?

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.

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@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?

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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.

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@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.

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@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

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
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