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Prolia infusion and BE flare afterwards
MAC & Bronchiectasis | Last Active: Sep 25 11:05am | Replies (39)Comment receiving replies
@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
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@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).