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Paget's disease of the bone and other inflammatory issues
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
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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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4 Reactions@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
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4 Reactions@ess77, I was just thinking about you the other day. I'm sorry to hear that you have a new diagnosis to add to the roster. I will be interested to hear what you learn at your next consult after further testing to learn what the treatment approach or next steps will be.
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3 Reactions@ess You are an unending fountain of optimism and good spirits! I’ve really missed talking with you. Guess we were both tied up with never ending physical problems. You are such a beacon of hope—I try to be like you every day!
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3 Reactions@colleenyoung, Thank you for your interest. The x-rays showed no fractures, so the doctor is backing off the Paget's. I'm confused a bit. I thought Paget's showed on imaging but not necessarily fractures. He's put it aside. My PCP also sent me to my Mayo docs re the iron profile issues.
Colleen, I have ridges in my skull that weren't there weeks ago. My skull hurts at times, whenever I touch the ridges. The iron profile shows high UIBC, high TIBC, normal iron level, and high transferrin, and blood oxygen is low. All these numbers are on the portals that I've connected so they can all see them. and my ferritin level is 60, down from 78 in Feb. The sleep department only treats RLS with low ferritin levels. She hasn't commented on the drop in test that was done at a different hospital, not Mayo. She won't order iron infusions since the last Mayo test was 78 and that's acceptable. It's now 60, not acceptable.
The PCP told me to contact my Mayo docs to handle these numbers indicating iron deficiency, but my hemoglobin and hematocrit are still ok. He's very concerned that the saturation is 16% . But, he's expecting Mayo docs to handle these issues.
The problem is I don't have Mayo docs who are treating this other than the RLS at sleep. S, I'm stuck. I don't function well day to day, have no energy, have extreme fatigue, etc. More than I usually have. So, I' really don't know what direction to go to get help. If I can just wait and see, ok. But, it doesn't sound like I should.
Perhaps I should contact rheumatology? Hematology? No one at this point?
Thanks again. I understand you don't advise but I do need some direction. The skull is a conundrum to me. Skull ridges aren't normal, so I do have that among my concerns.
Oh well. There you go....Thanks, again. Blessings, Elizabeth.
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2 Reactions@becsbuddy, I've missed you, too. You have been through so much since we first began our friendship. I feel much the same for you. You've been one to encourage action, and activity even when you were recovering. I hope you're doing much better today and your life is filled with good things.
I'm in a place of questioning at the moment. My PCP is concerned about my iron saturation and iron profile numbers. He doesn't appear concerned about the ridges in my skull, but I wonder why and what and don't like the discomfort they cause. Just don't know where to go for answers. I don't have a Mayo doc overseeing my iron levels other than sleep for RLS only. She doesn't want to move ahead with infusions now based on the Mayo testing in Feb, ferritin at 75. March at Baptist Health Hospital ferritin was 58. April - 60. I'm eating steak, asparagus, and fresh spinach 2-3 times weekly! Salmon at least 2X weekly. Maybe I need to just eat Moose Tracks frozen yogurt every day and be done with it!
Off to enjoy Moose Tracks! Blessings, elizabeth
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1 Reaction@ess. I’m wondering if you have seen a rheumatologist. They follow autoimmune diseases. My latest is EPI or exocrine pancreatic insufficiency. It adds 8 giant pills to my daily pharmacy of pills!
Moose Tracks sounds great, but I like Irish Cream Brownie even better!
Take care, Elizabeth, and I hope things settle down for you.
Becky
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4 Reactions@becsbuddy ...You may be right. It's so good to have someone to bounce things off, as I can't discuss my health issues with my son. He doesn't deal with those things at all and I think any reminder of my mortality doesn't help his frame of mind. He's surely concerned for my best, but at the same time very concerned about how he'll survive if he survives me. Legitimate concern..
Oh my. Did I do something I shouldn't have done! I ate 1/2 gal of that darn Moose Tracks yogurt...couldn't stop! It stopped being good halfway through but I didn't feel like getting up and it was melting so I had to keep eating it. Oh, my word, I'm going to be ill most of the day and evening. I feel awful, Becky. I haven't done that, ever. As a young woman I might have eaten a pint if I was depressed or something but to finish off a half gallon...I'm bloated, gas is crazy, nauseous, can't breathe my stomach is so big....Yes, I'm giving you quite a giggle for sure. Enjoy, Never again. UGH!
I think I'll call my rheumatologist Monday to see if his staff thinks I should see him. Good prompt. He handles my sarcoid, vasculitis, and other stuff, so maybe this he'll do also. I had the splenic aneurysm checked last week with a CT scan. Abdomsn looked fine. It hasn't grown and is quite small. So, that's a very good thing. Hope the same for the ascending aortic aneurysm. I have an appt with my heart surgeon in June to ck that fellow. With all that's happened the last year, I don't see how it stayed the same. The stress was enormous and several severe shocks as well, so it may be larger. Hope not. I'm not a candidate for surgery so it just has to be ok on its own. I suppose eating gallons of frozen yogurt isn't especially good for it, though.
I'm hopeful the iron situation gets resolved as I really need some daily improvement in functioning. It's holding me back and I don't like that. Life at 76 is going so fast, I don't want to miss a single day. As it is, I'm staying pretty much inside most days, but want to get busier to complete setting up for my estate sale. I must get this completed before I leave this earth. I will not leave all my things for my son to deal with. He can't. And, I want my home back to enjoy again. So, no more over=eating, and someone has to get this body working better. Soon.
Oh, our Mayo Falcon friends, Hattie, and Orin have 4 eggs they're sitting on now. I began watching again. You know, those falcons kept me together during the worst of the pandemic. I'll never be able to thank them, but I thank Mayo for doing all they've done for the falcon population and allowing me to be a part of it. It's truly wonderful to watch and hear them live their lives each spring.
Be well and be blessed, my friend. Elizabeth
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2 Reactions@becsbuddy, @crikee, @colleenyoung, and all...I called this morning to Mayo rheumatology. The staff is setting an appointment with my rheumatologist to check on the wonky bloodwork...
iron TIBC, UIBC, saturation %, transferrin, lower ferritin level, and the skull ridges. It seems I have Paget's Disease re the skull ridges, but the doctor didn't go further than no fractures and referred me to Mayo.
So, I'm hopeful this will lead to a good understanding of these crazy results. As I mentioned, if there's nothing to be done, ok. But, I think there are issues to address and I want my iron levels and usage improved.
Thanks, Becky for the encouragement. You are a great Connect friend. I hope some of my issues help others. I'd love to know more about Paget's but haven't found any good recent information. Suggestions? Information?
Blessings, elizabeth
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2 Reactions@ess77
Here is some information from the Mayo Clinic. I don’t know if you already seen this.
https://www.mayoclinic.org/diseases-conditions/pagets-disease-of-bone/symptoms-causes/syc-20350811
The information says that the incidence of Paget’s disease is decreasing and occurs mostly men. I’d love to hear what the rheumatologist says!
When will you learn more about all the bloodwork?
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