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Prolia

Phyllis Ann

By Phyllis Ann
in Related Issues & Disorders

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Phyllis Ann Newbie
Phyllis Ann
Posted

My primary physician has requested twice that I try Prolia. I backed out the first time because I just was not comfortable with the drug. I also have low blood pressure and TMJ. She is usually very attentive to detail but has not run any blood work, did not examine my jaw. I’m very concerned about starting treatment but am afraid of losing my doctor also. She does listen but in this instance I think more research needs to be done before jumping into to see if it works. Have any of you tried it? We have signed up to a gym. We walk almost daily and I do use weights occasionally. Need to up my game. Thank you.

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trents Grand Master
trents
Posted

Do you have diagnosed celiac disease?

Scott Adams Grand Master
Scott Adams
Posted

Welcome the forum, and I had the same question as @trents, and if the answer is yes, can we assume that you had a bone density test and have possibly been diagnosed with osteoporosis or something similar? 

Of course your doctor knows much more than we do at this point, and there must be a good reason why they prescribed Prolia.

Phyllis Ann Newbie
Phyllis Ann
Posted
  • Author
8 hours ago, trents said:

Do you have diagnosed celiac disease?

Yes, I do. Her office just called and said that it is very, very rare to have problems with TMJ with the Prolia. I was just checking to see if anyone else was on Prolia or knew anything about it. Thank you for your reply. 😊

Wheatwacked Veteran
Wheatwacked
Posted

I had TMJ for a number of years. Eventually it went away. To be honest, I don't know why but suspect it was the Standard American Diet.  Once you start Prolia it is dangerous to ever stop.

Can Supplements Help Manage or Prevent Osteoporosis?   https://www.healthline.com/nutrition/osteoporosis-supplements

Quote

People with weakened immune systems are advised not to use to denosumab because it can lead to serious infections that require hospitalization (such as heart infections). It can also cause disintegration of the jaw, called osteonecrosis, and atypical femur fractures...The NWHN [National Womens Health Network] is concerned that for most postmenopausal women, the benefit of denosumab does not outweigh the risks. We recommend that women seeking osteoporosis treatment approach denosumab with caution. https://nwhn.org/is-it-dangerous-to-stop-prolia/

Phyllis Ann Newbie
Phyllis Ann
Posted
  • Author

Thank you for this information. It never set well with me - just the thought of it. I never found this information and I thank you for sharing it with me.

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    • Russ H
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      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
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    • trents
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      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
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