I was diagnosed with osteoporosis in July 2020. I am confused as to which doctor I should consult for treatment. My primary care doctor wants me to take Fosomax. I want to wait until my heartburn issues are resolved before starting Fosomax, since heartburn is one of its side effects.
My primary care doctor recommended that I see an endocrinologist. My gynecologist said I should talk to a rheumatologist and she thought my T-scores were not that bad. My gastroenterologist told me I should go for the injections (Prolia) instead of Fosomax because he thought given my history with heartburn I would very likely have heartburn problems with Fosomax. My hip surgeon who did my right hip replacement in 2019 thought that I should start Fosomax now because I am only 54 and have time to build up my bones. Every doctor has their opinion, but first I need to schedule an appointment with a specialist to help me decide. I don't know which doctor to see, an endocrinologist or a rheumatologist?
Right now, I am taking calcium and D supplements and trying to exercise, follow the COMB study protocol, and see if my scores will improve. I know eventually I will have to go on Fosomax or some medication. My T-scores were: lumbar spine -3.0, femoral neck -2.3, hip -1.9, and 10-year fracture risks were: major osteoporotic fracture 5.6%, hip fracture 1.1%.
I would appreciate any advice as to which doctor to see and what your experiences were. I'm just not sure where to begin or if my scores are that bad. Thank you!
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jupitermercury
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I have read that taking a medication which is associated with GI side effects is not advisable when one has an existing similar condition. According to a presentation by Dr. Dan Solomon compliance with any medication that has GI side effects is only 50%.
In this presentation Dr. Susan Ott cites a study which concluded HRT is more effective than Fosamax. Has this option been discussed?
Have tests been done to rule out secondary causes of bone loss? The experts says that 50% of postmenopausal women have an underlying condition which contributes to bone loss.
Are you petite, small-boned by any chance? If so, one's DXA may be skewed - that has been my personal experience.
Your fracture risk is not high - as 90-95% of fractures result from falls even at a young age of 54 it is never too early to take precautions to avoid them! Learning proper movement patterns and form such as a hip hinge instead of spinal flexion would be helpful. Dr. Paul Miller notes most vertebral fractures occur from ADLs - Activities of Daily Living.
Hil lilo, Thank you for the link to the presentation! The information is very helpful. I am small-boned and on the petite side. My primary care doctor reviewed my bone density scan results and went right into recommending Fosomax. She did not ask me any questions or checked for secondary causes for bone loss. I will definitely bring that up when I see a specialist. Thank you!
Thank you for your assistance, Mark! From the screenshots it appears the presentation discussed ABH's previous Fracture Risk Calculator. My notes from the presentation: "Osteoporosis is one of the risk factors for breaking a bone but it only accounts for a portion of the overall risk." 18:10 mark. Cortisol blocks absorption of calcium at which decreases bone cell growth. 27:04 mark "Bone density is a volumetric measure and will underestimate the bone strength of someone of small stature."
I was interested in your reply when you said, “Are you petite, small-boned by any chance? If so, one's DXA may be skewed - that has been my personal experience.”
I know that small-boned, slight built women do have tendency to get osteoporosis ski was not surprised that I was diagnosed with it recently but I haven’t heard anything about diagnoses being skewed. Can you tell me more what that meant for you? Thanks.
There are both endocrinologists and rheumatologists who specialize in this area, so look for someone who specifically mentions that they treat osteoporosis/bone metabolism/bone health.
You are relatively young, and your numbers don't appear to be too bad at first glance. A specialist can discuss whether you have other risk factors besides your T-score and how to manage them.
I would be very careful with Prolia injections - I gather that once you start them you have to take some sort of bisohosphonates as soon as you stop it - to prevent rebound fractures. Yes u can have infusions once a year which I gather by-pass your oesophagus and avoid prob.ems with reflux.
I deal with the rheumatology dept at our hospital although I have only ever spoken with a fracture liaison nurse.
I imagine it is the -3.0 for your lumbar spine that worries your doctor.
You should add vitamin K2-Mk7 in as well as your calcium and vitamin D and I also take magnesium and an algae based Omega 3 250 DHA and boron as well as lots of load bearing exercise. I try do do heel drops whenever I’m standing for a few minutes and do lots of stomping - my Pilates teacher says to pretend we are standing in a vat of grapes and are crushing them - to the front back and sides. The COMB study looks good.
Hi fruitandnutcase, I’ve learned to eat natto to get my vitamin K. I didn’t like the taste at first. Now I mix it with miso and it actually tastes good. I walk up and down flights of stairs in my building as my weight-bearing exercise. The stomping and crushing grapes image sounds good. I’ll try that. Thanks!I’ve read many negative comments about Prolia here. Reclast is another option I was thinking of. I will ask about that at my appointment.
Boy, I am so impressed that you have learned to eat nato! That is seriously impressive. I’ve read that as a rule it’s only people brought up on it who can manage to eat it and even then it’s not that easy.
Stomping grapes - I tend to be next to a chair when I cross over the front and back of the other leg - just to be on the safe side.
I’ve just seen Reclast is a bisohosphonate so you ought t be ok with that.
Lol, yeah I got lucky with natto. I came across this company founded by a microbiologist that sells only fresh natto made in the U.S. I was intrigued by all the food science on its website and decided to try it. I have a lot of digestive issues and could not tolerate most probiotics. Natto is one of the few probiotic foods that I can tolerate. The taste is quite bitter. If you add something with a strong flavor like miso, it will mask the bitterness, and it has a nutty savory flavor. I love it now.
I am on my 3rd and last Reclast annual infusion which was the follow up when my Forteo two year daily injections were up. No problems, no reaction. I will see my medical school rheumatologist tomorrow to discuss what comes after my 3rd Reclast infusion in April.
Thank you for sharing! I'm glad you're getting a follow-up after 3 years, which seems to be a best practice for preventing adverse effects from bisphosphonates.
I have check ups with the rheumatologist each March before the April RECLAST infusion and then again in the fall. Blood tests are run before the Reclast is ordered...and if that is more than a week or so before the Reclast, the infusion center does a full panel while I wait at the infusion center. They want to be certain my kidneys are functioning well, among other results.
I also was diagnosed with Osteoporosis this summer (partially due to many years using Prednisone due to Psoriatic Arthritis.). I see an Endocrinologist at Mayo Clinic & Rheumatologist there for my inflammatory arthritis. I tried Fosomax while I had Osteopenia, but ended up with Osteonecrosis of the Jaw (rare side effect of Fosomax type drugs.). A month ago I started daily Forteo injections over a 2 year period. I hoping to recover some bone mass at that time; so far the Forteo injections are easy and I’m not experiencing any problems. (Follow up will be with the Endocrinologist.)
Hi GDCM, I'm so sorry to hear about your Osteonecrosis of the Jaw. Did you have major dental work done or it just happened on its own while on Fosomax? How long did it take for it to heal? Was it very painful?I ended up seeing an endocrinologist, who suggested Prolia or Forteo at first visit. I'm still waiting for some test results to decide and discuss with my endocrinologist. Unfortunately, my insurance does not cover Forteo, so I may have to go with Prolia, or Tymlos, which is similar to Forteo but cheaper and has only been around for a few years.
Good to hear that Forteo injections are easy and you have no reactions. I'm hoping my insurance will cover Forteo eventually. I'd rather go with a well-studied drug than a new one. The side effects of theses drugs are terrifying. It helps to hear about your experience. Thanks!
Please read my other replies regarding Forteo and that you may qualify for Forteo free from Eli Lilly's "Lilly Cares Foundation" based upon your income.
From what I have read, and the information by my rheumatologist who is also an endocrinologist, nothing at this time is similar to Forteo nor approaches the objective of increasing bone density like Forteo. (Forsteo in GB) It searches the body and slowly builds bone density WHERE it is needed, not just everywhere.
It acts slowly so it takes 6-12 months for the doctor to determine if it is working, and two years to see if the increase in bone density is maintained.
It does not heal bone fractures. Eli Lilly helps people, based upon income, who have difficulty paying for Forteo because it is expensive and not all insurance policies cover it or only cover part of the cost. And the daily injections require the purchase of needles. Eli Lilly also provides those if one qualifies for assistance in the Lilly Cares Foundation of Eli Lilly.
I am a success story for Forteo and I did qualify for Lilly Cares as the household income limits are reasonable.
Hi, I did not have any dental work done and have excellent history with my teeth (3 fillings, zero root canals, etc). The Jaw Osteonecrosis was picked up during routine dental visit, when bone loss was shown in a lower jaw when compared to the year prior. I had been on Fosomax for less than 6 months; and was told to stop immediately and never take anything similar. That was about 15 years ago, and now the bone has much improved. (I am lucky to have good dental health, as I was warned of consequences to any jaw injury or dental work on that side.). There was no pain or anything I knew was wrong in my jaw; I learned about it from the Xray and was then referred to dental surgeons and experts for upgraded Xrays and tests to confirm the diagnosis. I am on Medicare Part D and had insurance problems as well. In 2020 my plan did not include Forteo in its Formulary, and would only cover Tymlos. I wanted to take Forteo (longer drug history) so waited until Open Enrollment for 2021 to select a plan which would cover Forteo (it is still very expensive, until I hit the Catastrophe Cap and get through the “Donut Hole”...which will only take a few months until the cost is very reasonable at that point. I am 65, so really need to do something to improve my bone density....so far after about 4 weeks, I’ve had no problems. (Felt a bit dizzy after the first few shots, which went away in about a minute.). Good luck, I wish you the best!
Thanks! That's good to know. Honestly, I want to delay taking any medication for as long as possible. But my doctor thinks otherwise. I know eventually I will have to take some kind of medication. You didn't take any bone meds for 15 years while on prednisone, and you have no fractures. That's really great! I hope I could delay it for that long. Can I ask you what you did to help your bones, and did your T-scores changed a lot in that time?
Eli Lilly's "Lilly Cares Foundation" provides the Forteo in a cooler to your door with the needles in 3 months worth of boxed Forteo (one box per 28 days) if your income meets it's criteria. ) Your doctor has to write the RX differently, but the forms are provided and the doctor faxes them with his hard copy RX. Just check on the internet. And the support medical people at Lilly Cares are terrific. Answered my questions and sometimes I just called to let them know if I was bruising more than usual from the injections, etc. It is a terrific support group.
Eli Lilly has a great separate team which deals with your medicare Part D ...it managed to get my insurance to finally cover it, but with a $1000 co-pay per 28 dose pens...but my approval from Lilly Cares approval came first. And my husband and I did not need to be close to poverty level income...no way near. If you are going to hit the donut hole problem, you may wish to see if you qualify for Lilly Cares and take that route.
I spent three weeks solid, probably 6-8 hours a day, 7 days a week, researching everything on the internet I could find that was RX for bone health after my rheumatologist told me his preference for me was Forteo (Forsteo in England.)
There really Is not anything else in the world that approaches increasing bone density like it does. As the FDA approved it only after the 2 years of it's final testing, we are only permitted 2 years of it in our lifetimes. I wish it were longer. Eli Lilly is still there for us though, as it tracks anyone willing to see how we do after the two years. Also, there is a free travel bag/kit Eli Lilly has to carry your Forteo. Believe that is available for anyone on Forteo. Just ask. Phone numbers are on the internet and I think somewhere in the literature that comes with your Forteo injector.
Keeps it Forteo cool enough for quite some time until you are near a refrigerator when you travel.
Our business placed us on ships frequently when I was taking Forteo, and I used that bag for my current injector, along with a backup injector in case of an accident or problem with the one I was currently using.
Not quite correct! haha I didn’t take any meds similar to Fosomax (due to Jaw Osteonecrosis) for the 15 years (but did take Calcium + Vitamin D) because I couldn’t take any of the advanced drugs until I moved into “Osteoporoisis numbers” per drug insurance policy. This only happened in 2020. (Medicare Part D won’t cover the medicine for Osteopenia.) Over the 15 years, I’ve had fractures to: T8 vertebrae, Sacrum, arm, foot/metatarsal...which qualified as “fragility fractures”. I knew I had to do something because of my bone life and quality of life as I get older, so just decided to do it and start the Forteo. I am almost finished with my first pen (28 days of injections) and pick up my 2nd Forteo pen refill today. So far no problems at all! (knock wood, crossing fingers....)
I completed my Forteo 2 years with very good results and now am on an annual infusion of Reclast. My best wishes that you experience such results too. (I left a detailed answer...is probably the last comment in this string of replies.)
Didn’t answer one of your questions. If I had been able to take Fosomax (or something similar) I would have..but there were no other options for me other than Calcium & Vitamin D. (I also was using Estradiol patches for other reasons, but also helpful for bone strength). My T-scores stayed very stable until the last 18 months when I had to start taking oral Prednisone more frequently off & on. I had to take daily Prednisone (typically 10-20mg daily, for a period of 60 days..including tapering) because Otezla was not working very well for me for Psoriatic Arthritis. I took Prednisone when I had flares, or to help my mobility when I traveled. I had taken Humira injections for 5 years successfully until this Biologic quite working as well and significantly lowered my immune system more than is typical...causing 3 hospitalizations for Pneumonia, in less than 10 months. So, I had to use Otezla which is less immunosuppressive to keep me out of the hospital. My case is complicated by my Autoimmune Disease...it is a bit of a “dance” between medications. I start Orencia infusions next month since I will have had both Moderna vaccines for COVID...and we will see how it goes! 🤞🏻
Wow, you've been through a lot with your Autoimmune Disease on top of Osteoporosis. I'm on Estradiol patch too, together with progesterone, as my hormone replacement therapy. I've been on it for 5 years and was thinking about tapering off. Then I found out I have osteoporosis, so I decided to stay on it to help my bones. I thought the fragility fractures would automatically put you in the osteoporosis category. I'm glad you finally got the medication you need. I hope Forteo will continue to work well for you, and good luck with Orencia! Thank you so much for answering my questions and sharing your experience!
Hi GDCM, Thank you for your great input on the forum. May I suggest using the "Reply" button when you respond to another user's comment? It helps the user experience to have replies threaded below one another. Thank you!
Well, due to a GYN endocrinology issue (all hormones tested fine, but rarely had menses, conceived but had stillborns and miscarriages, I was referred to the local university medical school gyn with a specialty in endocrinology. 99% of his patients were attempting in-vitro fertilization to HAVE children. I just wanted to stop being able to conceive again only to lose the child. Although uncommon, there apparently is no medical explanation for the condition. I was placed on a mild dosage birth control pill, as I had a greater risk of cancer by not having regular menses than from taking this birth control pill. (One needs to take it whether or not I was sexually active as ovulation happened.)
Once the endocrinologist felt he had me past menopause (blood tests), he referred me to the medical school's rheumatologist for help if needed for any sign of increased chance of osteoporosis. I was diagnosed with osteopenia at that time and taking a weekly tablet and believe it might have been Fosamax. It is rather caustic and can be very irritating to the gastrointestinal tract..remember I had to be up and not lying down after taking it with water for an hour before any breakfast.
The rheumatologist was considered the expert concerning osteoporosis. When I learned several years after he put me on a rest from medications, there was an old vertebral fracture, he immediately had me see him and explained why he wanted me to take Forteo for two years. It approaches increasing bone density completely different than anything else medicine-wise. After two years of daily injections, my bone density increased 12% WHERE I needed it. No side effect. Forteo does not heal fractures but if RX early, before numerous fractures, there is an opportunity to build bone density, not just to prevent less bone density.
Tomorrow I have an appointment with my rheumatologist to verify our next step is for my 3rd annual infusion of Reclast which has effectively maintained me as osteopenia without any further bone loss and no fractures. We will also discuss what maintenance medication I will change to next year, as 3 infusions are apparently the maximum recommended for me. I will need to have some maintenance medication for the rest of my life. I was in my early 60s when Forteo started.
Forteo was very expensive, but Eli Lily has a foundation that provided the medication and needles to me gratis. The Reclast is $5,400 per infusion, and Medicare covered much of the cost. I had no complications nor side effects.
As you have had hip surgery and other bone issues, perhaps a rheumatologist and your orthopedic MD would make a good team in your deciding the best road to take. My rheumatologist does all my blood work to test and check my progress and potential issues, orders my bone density test, etc. before any treatment is discussed.
The rheumatologist, I believe, will be a permanent part of my life. I am very glad he was available, and that osteoporosis is his bone specialty.
Hope this story is of some use for you in your decision-making.
Hi, lawdog. It's nice to know that Forteo worked so well for you, and that Reclast is helping too. It definitely helps to hear about your experience! Thanks for sharing your story!
To answer jupitermercury and all the people who wanted to know what my rheumatologist would RX after my 3rd and last RECLAST infusion in April. The answer is nothing, hopefully.
Hi, saw my rheumatologist this week, and he is a man of few words. Instead, he pulled up the lab reports and the DEXA results on a monitor and was so excited to point to each item that was positive, even down to my Vit. B and D and calcium levels, bone density in various parts of my body. Well, he has been a man big on what he can see through blood tests...I don't complain about the blood draws and understand he is educated in ways to monitor my progress in so many ways from what the blood reveals....
Then he began to squeeze my arms and legs and poking his fingers in different parts of my body from my back to my feet and my abdomen and shoulders, my hands, my neck asking if I felt any pain, and had I any broken bones since I last saw him...when he was reaching my ribs, I told him we would need to be engaged if he reached too far up my sides and my breast area.
He was excited to show me that for the last three years I have been in the range of osteopenia and no longer osteoporosis. I already knew that BUT then I realized he is not seeing 90% of his patients in person due to COVID 19, so really wanted to see me to show how excited he was that his approach to my care, with me following it on my part, had reached our objective 100%. That doesn't happen with every patient.
So we celebrated together for several minutes. Then I asked, what happens after this 3rd RECLAST infusion? He said the RECLAST would last a year, but then next February, maybe a one-year "vacation" from medication, as any of them including RECLAST, and except Forteo (as it is only RX for two years), may cause brittle bones from continual use.
His excitement was caused by what he felt: with my lifestyle of moderate exercise of walking, and riding my Catrike almost every day for a few miles around my neighborhood with my large service dog running alongside, and what I was eating, and not eating or drinking, I could hold my condition as osteopenia without medication. Bloodwork would be done once or twice a year to monitor this conclusion. I would continue to be his patient, with annual or semi-annual visits and blood tests, forever if I wished.
So, after April's RECLAST infusion, there will be no medication RX if April's 2022 bloodwork comes back showing I am still osteopenia or better. Then bloodwork again toward the end of 2022 to see what my status is, etc. So we'll take it one year at a time.
I also asked him, if I needed to return to the RECLAST infusion, would my body have a bad reaction to starting it again...he assured me, unlike some of the other medications, RECLAST DOES NOT CAUSE A REBOUND RESULTING IN BONE LOSS.
So , can I get an ALLELUIA or at least a few AMENS out there? It is just beginning to sink in that I may not need medication in the future to maintain healthy bone density. I honestly don't believe it yet. But I do know I have a chance and to take each year as it comes.
My wishes are that every member of this support group has the same news coming to them also. AMEN!
Congrats on the good results! When you say your doc uses bloodwork results to determine that you are in the osteopenic (vs. osteoporotic) range, which blood tests specifically is he ordering? Thanks.
Hi! It’s been over a year since my third Reclast and I will have a Prolia injection in a few weeks as maintenance this time. As I have no dental or jaw issues whatsoever I am agreeing with my rheumatologist because my blood work was great and my DEXA was also except for a small area at base of my low spine. That area is not responding to the Reclast as well as every place else so after explaining why the Reclast injection should be tried, I agreed . And when I asked him if I was his mother, he still said Reclast was best for the first of the two injections usually given in a year. Will keep you updated if you want and please let me know how all of you are doing, ok? 😘
I see an osteoporosis/ endocrinologist but I know that some rheumatologists treat osteoporosis as I had a consult with one. I have successfully taken Re-Clast infusions without issue via the endocrinologist.
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