Prolia treatment for osteoporosis: What is your experience?

@artscaping Thanks Chris, you have been a wealth of information, being ahead of me in having to deal with this miserable condition. I checked out the link about endocrinologists, but as I mentioned, rheumatologists do also provide care for osteoporosis. I wonder if they have different approaches. As I mentioned somewhere, my endocrinologist does not have osteoporosis listed as conditions that he treats. The rheumatologist I have chosen at Mass General does, plus the PCP said I should see a rheumatologist and I checked with a friend who has osteoporosis and her doctor for it is also a rheumatologist.
I have numerous appointments coming up in the next month and a half, they all got bunched together -- my gynecologist this week, my PCP in a couple of weeks, later my endo, my transplant surgeon, my orthopedic surgeon, and finally the rheumatologist, probably not until December. Sometimes I feel like I am single-handedly supporting the whole medical community! I hope to get some more input from my gynecologist and my PCP and possibly my endocrinologist before the all-important visit with the rheumatologist. I really like and trust my gyno and my endo so look forward to their input. I thought it seemed strange that a gynecologist would be involved but I was told that they are more often on top of the density testing than the PCPs are.

@migizii I was thinking that it does probably take longer to heal if you already have osteoporosis. This whole thing is confusing. I am reading the book "Strong Women, Strong Bones" and it seems like the best bone-strengthening exercises are not recommended if you already have osteoporosis. The best ones have high impact.

@mslw I will be interested in hearing how things go with your endo appointment. Is this an MGH doctor also, and if so which facility is the doctor at? Living in NH I try to find doctors who are at the Danvers facility first, and if not there then Waltham. If necessary I go to Boston but despite the distance being similar to all three, it's just easier to not have to go into Boston and deal with traffic approaching the city.

Getting old really is not fun.
JK

The endo. doc I’m seeing soon is in Brigham, but will see MGH endo for 2nd opinion before starting any medication. No, getting old is not fun!

@mslw Of course Brigham and MGH are "partner hospitals" so that can be helpful, I guess. Or will one not want to contradict the other? My orthopedic surgeon who did my TKR is part of Brigham and it was very helpful in that case.
I am really interested in hearing what they say. Do you mind if I ask who the endos are? If you prefer to not say in a public forum you could PM me. I really just want to gather as much info as possible. This diagnosis has really got me spinning. I thought I was doing great, eating well, exercising at least six days a week, I lost weight (that probably contributed to osteoporosis!), and now I find myself fearing a fall. I know when the icy days of winter arrive I will be a wreck.
I felt great before and frankly pretty pleased with myself for how well I was doing. Now I am pretty discouraged.
Thank you.
JK

Hi, JK.
Is this PM or just another way of posting to the group?

Or will one not wantto contradict the other?
Good point. If #2 has not looked at my record (?), I will start off  being vague about what #1 said.

I am absolutely fumingat my PCP that he dropped this ball. What was his excuse?

I lost weight (thatprobably contributed to osteoporosis!), Me too! My BMI is very low and myfather had osteoporosis....died soon after a fall which broke his hip.

I am also meeting with my (concierge) PCP in between endocrinologist visits, soI will have 3 opinions.She used to work in Partners, but now can contradict anyone she wants... doesn’t recommend oralmedication because I have swallowing issues (another mystery!)....put that in a note to the Brigham doc.
If you PM me after 10/10 I will give you names of  endos. and more information.

I know when the icydays of winter arrive I will be a wreck.  I use something like ski poles, just in case Ihave to walk on ice.
Now I am prettydiscouraged.
Focus on what you cando (within reason) going forward. Easy to give advice, I know.
mslw

When I was diagnosed with osteoporosis 9 months ago , my primary care dr had his nurse call to tell me.
In 1 quick sentence she sd I had Osteoporosis & 'dr said take either Prolia or Reclast'.
I didnt know what those were & she didnt explain but said there was 'no rush' to decide on which one I wanted to do.
Didn't even tell me to come in & talk with the dr so he could tell me about Prolia or Reclast and really he certainly
should hv referred me on if he couldn't explain to me what type of meds they were.

I did my own Google search & scared myself reading all the side effects of both.
After 3 months of worrying I choose Prolia injection after joining MayoClinic Connect online & reading the pros & cons.
Then after I got the Prolia injection, I read that osteoporosis should be treated by an Endocrinologist so I went to my Primary Care dr & he said 'absolutely no' to referring me on to an Endo but he would refer me to a Rheumatologist which took 3 months to get an appt with. So a lot of WASTED time trying to doctor myself & find the path to who could treat me for osteoporosis.
I was very irritated by that time when I finally got to see the Rheumatologist a 2 1/2 hr drive to another city.

Rheumatologist sent me for full blood work after my appt with him to check Vit D & Calcium levels which came out OK.
His nurse called me within the week to tell me my D & Calicum levels were fine. Nurse didnt tell me my numbers so I went to medical records & got a copy of my full panel.
My Vit D = 70 (30-100 ref range) My Calcium = 9.2 (8.6-10.3 ref range)

Rheumatologist asked why I was on Prolia & said he would have put me on the Reclast IV once a year & said it was cheaper than the 1450 every 6 months for Prolia. I dont know what he was basing his decision on regarding liking Reclast rather than Prolia .
It can't be just because its much cheaper.
He talked way too fast & didnt want to go into the WHY of it but went on to tell me how osteoporosis is a death knell & if I fall & break a hip 60% die within the year.
When I came out of that appt I had a lot of anxiety wondering about his unexplained concern that I chose Prolia over Reclast
and I'm just about due for my 2nd Prolia.
I do read all the comments on this Mayo Connect site noting how others are dealing with their osteoporosis.
Very challenging time of our lives to stay as healthy as we can.

Good afternoon @mslw. Before I forget.....here is a link to the discussion about how to prepare for an appointment with a specialist. I found it helpful and so do my medical providers.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=7#comment-317416

My "new" bones have not been tested yet. I am entering month four of the Tymlos injections. That is a good question Lisa and I have added it to my list for my October 15 appointment.

I do not have scoliosis and the tests determined that there were no fractures in my spine...in spite of the osteoporosis. My exercise routine has changed in that I used to walk 2-3 miles a day and work out with a trainer. Now I do gentle yoga to include stretches and strength building poses. I also use 2 lb weights for my wrists and arms. That has made a huge difference in even the appearance of my arms and wrists....they have gone from just sticks to a more healthy form.

Just don't get carried away. I tried to move up to 4 lbs by holding two 2 lb weights in each hand. My shoulder complained vociferously
and I had to go back down to the 2 lbs.

Lisa, may you be safe and protected today. Chris

I feel so much anxiety for all of us, it seems there is no good answer. I will just keep going and keep praying. I did have a conversation about this with the smartest doctor I know and he said that all of these medicines essentially work on the same principle. I have watched my husband take two years of bone strengtheners, then two years off. He is now almost a year into treatments again after a 6 year break from them. He does very well on them, and so far I have had no issues from prolia, other than some aches and pains. I have seen how bad the spinal compression fractures effect quality of life for my husband, this is what I am trying to avoid.

Glad you and your husband are doing well on your medications. Yes, you are so right, there is anxiety and worry in trying to make right decision about something that so seriously can effect our health and daily life. Hoping and praying there will soon be some great advancements in safe and effective osteoporosis drugs. Good luck to you and your husband.

To all Fibromyalgia suffers I have some information I received from the Cal State nurses they research and found Brain inflammation seen for the 1st time in fibromyalgia patients. It has been published in the Medscape Medical news and Brain Behav immun. Go to news@medscape . Also in the Harvard catalyst Advance Imaging Pilot. Swedish Research Council, Swedish Rheumatism Association and Fibromyalgiforbundet. ,They found The activation of glial cells releases inflammatory mediators and contribute to fatigue . So its NOT in our heads as we where told . The glial marker for this is TSPO,a translocator on several regions of the brain Overall, our data support glial modulation as a potential therapeutic strategy . the author writes . So this wasn't known 40 years ago so at least there is some hope that a cure maybe found at some point.

Bravo for you sharing this Swedish research information. Thank You!