really panicking over infusions, please help

[Cavey-girl]

Hi everyone,

I am a 62 year old woman and 103lbs (lost a lot of weight during the pandemic) who was diagnosed with osteoperosis in 2020. About a year ago(7/26/2022) I did a dexascan with following results:

Lumbar spine (L1-L4):

BMD 0.766g/cm2

Z Score -1.9

T Score -2.6

Interval Change (%):-4

Left Femoral Neck

BMD 0.583g/cm2

Z Score -1.5

T Score -2.4

Interval Change (%): -1

I recently did another dexascan (8/16/2023) and found out my condition is deteriorating rapidly. Below are the following results of the that particular scan.

Lumbar spine (L1-L4):

BMD 0.715g/cm2

Z Score -2.3

T Score -3.0

Interval Change (%):-7

Left Femoral Neck

BMD 0.547g/cm2

Z Score -1.7

T Score -2.6

Interval Change (%): -10

I've been doing as much research as I can into different treatments, but it all seeems to be leading me to doing bone infusions. I dont have private insurance only medicaid and I live alone. Everyday I take 1 calcium tablet (600MG) and 2 Vitamin D3 (4000IUs). When I was first diagnosed the doctor put me on Alendronate I only took it for two weeks because the I felt like I could'nt breathe because it was closing my esophagus. Recently I realized I was taking it wrong (taking it right before laying down for bed) because the doctor only mentioned to me that all that was needed was to take it once a week at the same time.

Back in January of this year my endocrinologist recommended I get zoledronic acid 5 MG/100ML which I think is Reclast. Is this a safe option? I'm a bit of a nervous nancy and as I have other health issues. I'm absolutely terrified that I'm going to fracture or break a bone which would compromise my ability to work (I've been a medical biller and coder for 30 years) . If anyone has any suggestions please tell me, also please share any experiences that you have with either of the drugs I mentioned. My condition seems to be deteriorating so quickly but im so scare becasue of what i've been reading about all these different drugs. There are many good doctors out there, but sometimes I get the feeling they don't necessarily care to have your best interest at heart.

I know this is a long post, please forgive me. I just dont know what else to do...

Thanks in advanced for anything anyone has to offere in the way of advice.

Dottie

[Met00]

Your bone mineral density (BMD) for those two scans is unchanged, for both spine and femoral neck! Could you check you've recorded it correctly? If you have, someone's given the wrong t- and z-scores for one or both scans and you haven't lost any bone density at all in the past year. If you've made an error and the BMD should be lower in 2023 compare to 2022, then that raises other questions before you even consider meds. The first would be, was the same machine used both times? The second is whether any mistakes were made in any of your scans (for example positioning, interpretation), as it seems very strange that you'd lost so much more bone density from 2022 - 2022 (7% and 10% loss for spine and femoral neck respectively), compared to 2016 - 2022 (4% and 1% loss). If there has been so much loss in a year (which I find it hard to believe - it's normal to lose 1% per year, apart from 5 years or more around the menopause, when loss can be 2% or more each year), then you definitely need to ask them to look for underlying causes, such as coeliac disease, hyperparathyroidism, any new meds you've taken regularly in the last year, and treat the cause before considering treating the bone loss.

[Cavey-girl in reply to Met00]

Thank you so much for your reply! I edited my original post to include the actual BMD chance between both scans. I have an appointment next week and I will ask the doctors about any other underlying conditions. I was on prednisone for many years until I found out the damage it was doing to my bones. I've stop taking prednisone since about 6 years ago or so. I have diabetes and have been taking metformin which supresses my appetite. I am making dietary changes but I do know the weight loss hasn't helped at all with my osteoporosis.

[Met00 in reply to Cavey-girl]

I can't see how prednisone would be affecting your bones now, but weight changes can affect DEXA scans. If you were overweight, that could make your bones seem denser than they actually were (DEXA scanning is not very precise, and the readings are affected by how thick or thin a layer of fat tissue the x-rays pass through). The other side of the coin is that if you're thin, your bone density might actually be better than the readings suggest. So, depending on how much weight you've lost, the apparent change in bone density may simply be down to weight loss rather than loss of bone density. Other things that can affect the accuracy are arthritis (can make bones appear denser than they are) and curvature of the spine (can make the spinal density seem worse that it is because it may be impossible to line the spine up straight). And as I mentioned before, if your scans weren't done on the same DEXA machine, they can't be compared anyway. Even an upgrade to the machine can have this effect! REMS scanning overcomes much of this, though I know it isn't widely available in the US, although it is officially approved (unlike here in the UK, where it's more widely available, but isn't recognised by the NHS!).

I hope your doctor is more knowledgeable than most of our UK GPs, and is willing to run the relevant blood tests to check for any underlying causes of bone loss. You need to have blood tests to check parathyroid, Vitamin D and calcium levels (all in the same blood draw as they're interdependent), thyroid, full blood count and coeliac. If it's available, I'd also ask for bone turnover markers, as these give a better indication of rate of bone loss. It seems to be more common in the US to have this test; here in the UK I'm not sure that all GPs even know what they are!

[Karana81]

Hello! I was diagnosed with osteoporosis many years ago. I took Actonel, daily, for a year which causes my esophagus to narrow and had stop. I didn’t take anything for over a decade and my numbers got pretty bad - -3.8 in my spine. I knew I had to do something. My endocrinologist recommended Reclast. I was terrified at the prospect and waited a year before I finally did it. I have had two infusions now and both were just fine. It is important to drink a lot of water, take a Tylenol before and after and I suggest asking for the infusion to be 30 minutes rather than fifteen. I take plant based calcium and Vitamin D-3. I also walk 2-4 miles about five days a week, do a few PT exercise to strengthen my spine and hips and a couple of times a week I walk with a weighted vest. Because breaking a bone is everyone’s major concern, I am very mindful about space - always hold on to railings, pay attention when hiking, etc. I am still concerned about my bones, but I feel like I am doing everything I can so I worry a lot less. I wish you the best.

[Smoker58 in reply to Karana81]

I am scheduled for infusion with Reclast. I’ve postponed twice due to fear. Hearing that you had two infusions helped. I’m still nervous about getting it.

[Karana81 in reply to Smoker58]

I am glad. Read up on ways to make this go more smoothly - drink water, take a Tylenol before and after and I believe the lengthier 30 minute infusion rather than the standard 15 minutes make a difference too. The first time I had the infusion I had no side-effects at all. The second time I was very tired that day and I have arthritis in my hands, which usually doesn’t bother me much, but my hands were so achy that day. The following day I was just fine! Best of luck to you!

[Smoker58 in reply to Karana81]

Thank you for your reply! Do you recommend the 15 min vs 39 min infusion for the first time?

[Smoker58 in reply to Smoker58]

Oops! I meant 30 min. Typo

[Karana81]

Yes - 30 minutes!

[BanjoGal]

I've had infusions for Reclast. Yes, there are risks, but there are risks of fractures with most types of bone meds. You just have to decide whether the potential benefit is worth it. I did. I don't know what other health issues you have but I would go for it & try to concentrate on the benefits. Anyway, those are the decisions I've made.

[Cavey-girl in reply to BanjoGal]

Yeah, I've been trying to gather as much information as I can so that I can make an informed decision. You make a great point, there is no perfect solution.

[Maria1360]

As a RN, I can't make a recommendation as to a particular medication without knowing a full medical history. What I can do, is tell you that Bisphosphonates are dangerous if not used correctly, but effective at rebuilding bone.

I also can recommend that you Google "osteoporosis meds that build bone", because not all osteoporosis meds build bone, and do your research. When you have your list of bone building meds/categories, you must first decide which of these meds you can safely take.

For example, I have Barrett's Esophagus and cannot under any circumstances, take a Bisphosphonate. So that entire category was X'd off immediately for me.

After deciding what you can safely take, that isn't contraindicated because of other health issues and has side effects that you feel can be handled/dealt with safely, take this narrowed down list and make a decision with your doctor.

I decided to go with a daily injectable, Tymlos, because of my comorbidities and unwillingness to take a chance with Prolia of developing a necrotic jawbone, due to a history of a broken jaw.

I hope this helps!

[Hidden in reply to Maria1360]

Biphosphenates do not rebuild bone. They retain bone.

[Kitchenbuddy in reply to Maria1360]

I have a Barret's esophagus also and IBSc. My digestive specialist is totally against taking medications for my bones and suggest I get my nutrients through food. I do take the Viactiv calcium chews with vitamin K and D and try to get low fat dairy and protein. I keep active hoping to avoid further deterioration. I am 67 with a - 3.5. Trying to get another bone scan as its been a few years. Its hard to manage health with several issues. You all make some good points here. Good to share thoughts and ideas.

[Cavey-girl]

Thank you all so much for all of your helpful suggestions, they are more valuable to me than gold at this point. Can anyone give me your experiences as far as how much bone mass you were able to build using reclast? How long have you been on it? And what were some of the side effects as well as how did you cope? Everyone here is so strong and your experiences are just so encouraging to me at this point.

[Smoker58]

I understand how you feel Cavey-girl. I had been a basket case for a long time. But I finally took the plunge and had an infusion with Reclast 4 days ago. Procedure went well and I had no side effects at all. Just be sure you drink LOTS of water and take two extra strength Tylenol the day of and day after. I’m so relieved and you will be too!

[Cavey-girl in reply to Smoker58]

Thanks soo much for all the encouragement! It really means so much.