Prolia infusion and BE flare afterwards

@sherrig Most important to all of us is taking time to think things through, not making a snap decision, and researching as much as possible about the drugs being suggested and how it may or may not affect one especially if one is fighting or living with one or more health problems and or taking other medications.

My last bone density test said -4. I am 83, never broke a bone so far and have fallen at least three times in the last decade. I exercise, not heavily, and am doing fine after several times of being told to get on the medications for the bone density medications for years.
Now we are all different, but this is one persons story.

I have fortunately done well even though I have avoided a good few life long medications for things when various doctors felt I had a problem and needed to be on medications.

We have to know our own bodies and what we are willing to do, dedicate ourselves to, to help ourselves with that dedication of doing right by ourselves.
I have come to feel, for me, that I would rather be the one making the/a mistake than have another's suggestion or way of doing things, that they have suggested, make a mistake that would affect me personally health wise or financially.

There is one other factor that I feel has helped me, since childhood due to Mom, I have learned about and taken vitamins and supplements that I learned would help with any health problem I have/had been dealing with. I survived legionella and mycoplasma pneumonias that I had at the same time....so there are many things in my case, possibly genes, that have helped me. We just do not really know the why in many things.

Hoping you find your way to the answer you need for yourself.
Barbara

@blm1007blm1007
Thank you so much for your post. I usually do deep research and in retrospect, I would have said let’s wait (hindsight, of course). My adult daughter was very ill and in fact died the next year so I was not in my right mind. Grief does weird things to one’s body and immune system, too. I am exploring other possibilities including sensitivity testing
and desensitization for Reclast after reading two valuable publications on this topic. Here is a link to one. https://link.springer.com/content/pdf/10.1007/s12672-025-02207-w.pdf The second was published in Endocrinology and Metabolism in 2022 re safely discontinuing Prolia.
— Jennifer

@desertdwellerjh I understand fully ....and many of us get all you have said.

It was shortly after helping my brother who in fact had emphysema and bronchiectasis that my diagnosis for my Bronchiectasis was received. Yes, many a nights and days so involved that I, and we, did not do best my ourselves....in concern for the others.
I know for sure my immune system was compromised during that two year period and put me in harms way health wise. Not saying that there wasn't something brewing before that time but I believe that time was the straw that broke the camels back...and what was 'sitting there' flared up and said ' I've just been waiting for you to let me out."
So sorry for all you experienced, it is never easy and especially with a child, daughter.
Barbara

Talk to your doctor and ask about the rebound isssues if/when you stop Prolia, that might play into your decision making process. I have not taken Prolia, but it was suggested I should. I decided not to take due to the rebound issues.

Your situation is interesting. I also have bronchiectesis and take Prolia subcutaneously every six months. My BE is uncomplicated with no known infections. My pulmonologist does not have me do sputum cultures. I also don't nebulize, just use my Aerobika 2 x day and postural drainage several times a week. Starting this time of the year my best airway clearance is bicycling a route that includes hills. I saw my pulmonologist today for my routine 6 month check and finally asked him how he knows I don't have any secondary infections since I'm an avid gardener and find lots of excuses to be outdoors. He said I don't show any symptoms of an infection so he "doesn't go looking" for one.
I am also on Prolia subcutaneously every 6 months and have not noticed anything different after I receive the medication.
I wish you the best in this challenging situation!

@snoei
Thank you for your thoughts. Coincidentally, yesterday I asked my pulmonologist for an aerobika because the acapella (?) spelling has become a real pain to open for cleaning. Even my husband gave up. Anyway the pseudomonas diagnosis was a real shock because I had no symptoms advertising its presence. Frankly I am hopeful that my specimen might have been contaminated but who knows. My endocrinologist did give me a referral for allergy testing re bisphosphonates but I could not get in until mid June so I have decided, unless my sputum test is positive again, in the interim to get a prolia infusion early next month and wear a mask every time I leave the house for the following two weeks. I do plan to get my covid booster, too, since it’s time.

@bee1950 I am 81, in 4 months will be 82. I was bullied into taking Prolia starting in September 2021. Diagnosed with breast cancer in May 2022. I had to take an aromatase inhibitor because my breast cancer was hormone driven, they would have put me on one of the biphosphonate drugs anyway. I am 5 years out from starting Prolia and until my first infusion of this year in March I have not to my recollection had any infection after a Prolia infusion but in March this year, 1 week after my injection, I started having the worst seasonal allergies reaction I have ever had. I have coughed til my ribs are sore. Much better 8 weeks later. I dont know for a fact that Prolia had anything to do with it or not but I am suspious that it did. I was diagnosed with very slight BE and MAC last summer. No symptoms at all. Saw an ID last summer and because I have no symptoms they decided not to treat the MAC at this time. Had my second bronchoscopy in November 2025 and the culture grew nothing after 8 weeks. I usually dont have seasonal allergy symptoms after May. So I guess I will find out if the MAC is rearing its ugly head or not. I wish I had NEVER agreed to start Prolia because I am told I will have to take it the rest of my life. Had a bone density scan a couple weeks ago. Don't know my numbers. Will call and ask but they did say my spine is osteopenic and my hips which were osteoporotic on scan 2 years ago are now osteopenic. Not sure if thats improvement in my hips or not but have a call in to nurse to ask for numbers. I wish you well. If I had a do over, I would fight tooth and nail NOT to take ANY of the drugs for osteoporosis because of the possible awful side effects that are proven to happen. A friend had 2 spontaneous fractures after Fosamas. Her femur then 10 years later her pelvis. She died 5 days after her first Covid injection in January 2021.🥹

Thank you to all: I appreciate hearing about other's choices on this subject. Tough decisions! At age 55. I did self-research, because I had dental braces, and decided to decline Fosamax due to its bone remodeling suppression, thus potential failure of orthodontic treatment. Rather, I accepted Forteo (only an 18-month treatment) which doesn't suppress remodeling. 21 years later I'm still declining osteoporosis drugs because they stay in the body a long time! With sensitivities to sooo many things, I worry about the BE flares these drugs are likely to contribute to.

@ursala7 Were you able to read my post of April 9, 2026.
Just the other day I realized that my tailbone is not bothering me as it had been before I began my morning light exercise routine after having been diagnosed with BE/MAC.

Since I am not on and have not been on any med's other than for a few days to try them due to the low bone density and had to come off of them (Forteo was the last one in 2015 and it took my D level down to nearly, if not, zero.) I believe for me the exercising has helped.

The Fosamax, Actonel and Forteo all effected my muscles and I was in pain and great unbearable pain after trying the Forteo. The reason for the great unbearable pain with having been on the Forteo for about a month was due to the low D level. I had to take high doses of D to get it back up and have continued on taking D supplements daily.
It is extremely important to know your D level before beginning the medications. I did not understand all of that, the importance of the D level, and the PA that talked me into taking the Forteo failed to tell me information that could have prevented what I went through. I had to figure my problem out on my own of what was causing my problem...I couldn't lift my arms higher than my waist and it was hard for me to open a car door. Getting out of bed with using my arms caused me horrible pain.
It took me two months of seeing other doctors who said "Nothing is wrong, can't find anything wrong" and then my putting many other facts together to understand it was a Vitamin D problem. None of the doctors ordered a vitamin D test during those office visits with my seeking answers.
We are all different but that was my experience..
Barbara

@blm1007blm1007 - That's so frustrating, albeit interesting, about your physical manifestations following the osteoporosis drugs. Thx for sharing: Sometimes, by comparing notes like this we open up our memories and minds to past experiences - it's kind of like forensic memory investigation.
I was about to respond that I had no trouble with the Forteo treatment at age 55. But before I responded, I turned things over for a while in my memory. The GP did not do any vit D level testing prior to Forteo. I know this because it was at least 15 years later before I had my first EVER vit D serum level test at age 70. I don't recall pain during the Forteo treatment. What did happen after the Forteo, was that I began to suffer joint issues - the first thing was baker's cysts behind the knee. Then problems with my thumbs and hands. The worst issue (started during the normal stress of my daughter's big wedding) was a prolonged case of Frozen Shoulder (which sounds much like your symptoms). It was excruciating. That lasted for at least 20-24 months all told. No one ever checked my vit D levels during these years. So yes, with hindsight, I should have been checked. In fact, I should probably push for testing again, since I have recently had a mild case of frozen shoulder on the other side in the last few months (which is 14 years after that first horrible episode).