Just joined: In November 2016 after a... - Bone Health and O...

Bone Health and Osteoporosis UK

6,763 members•3,080 posts

Just joined

Exbury1905•

In November 2016 after a Bone density scan I was diagnosed as Osteopenic. My doctor prescribed alendronate daily. After my BD scan in Nov 2017 my bone density had increased and was told to continue with what I was doing...good diet, Calcium and Vit D, Pilates 2x weekly and alendronate.

My next BD scan was in December 2018 but I couldn't get the results until March 2019. My hip had decreased bone density but the bone density in my spine was slightly increased. My family doctor prescribed Prolia and I had one injection (in March).

Since then I have been feeling more tired and the pain in my back (I have had chronic low back pain for decades) has increased. Also I have severe leg cramps, am more tired overall and have occasional pains in my face.

Today I visited my dentist for a filling and asked him about the ridge that had appeared recently on my upper gum. He asked if I was on Prolia and when I said I was he said the ridge was due to bone growth under the gum and advised me not to use Prolia for more than 1 - 1 1/2 years. I asked him about the leg cramps and he said they could also be caused by Prolia. Several of his patients suffer from pains in the face/jaw and head...

I am due for a second injection of Prolia in September but have decided not to have it.

What should I do?

Written by

Exbury1905

To view profiles and participate in discussions please or .

Read more about...

39 Replies

•

HeronNS6 years ago

Let me get this straight. You never have been diagnosed with osteoporosis, only osteopenia, aka low bone mass? Yet you have been taking bone medications for several years?

I'm not a medic, only going by what I've read and from the comments made by fellow patients on this forum. Do not get that second Prolia shot.

Do you happen to know your t-score? If you do and can share that will help us on this forum give you better advice.

Meantime you could read my account of what I (also osteopenia and other risk factors) have been doing:

healthunlocked.com/pmrgcauk...

Exbury1905• in reply toHeronNS6 years ago

Thank you for your reply. Correct. I have never been diagnosed with osteoporosis, only osteopenia. I started Alendronate in Dec 2016 and stopped that in March 2019, just before I had the Prolia injection. I will NOT get the second Prolia shot!

My T-score:

Lumbar Spine: (2016) 0.4; (2017) 0.4; (2018) 0.6.

Hip: (2016) -2.2; (2017) -1.7; (2018) -2.0.

I have read your account and will take some time to digest it!

HeronNS• in reply toExbury19056 years ago

I looked this up, should have bookmarked the reference, but what I read was that it's safe to discontinue Prolia after one shot. If you have as few as two shots you have to go on another bone medication in order to avoid the risk of rebound osteoporosis. I believe your doctor was negligent in prescribing Prolia to you. It's a medication which should be reserved for those people with severe osteoporosis who have no alternative and are prepared to stay on the medication for the rest of their lives. As it also affects the immune system this is not a decision to be taken lightly. I'm so glad you've decided to pull back and do more research before agreeing to any other osteoporosis drugs.

Exbury1905• in reply toHeronNS6 years ago

Thank you. That more or less agrees with what my husband, who is a pharmacologist, found out. I shall have to have a chat with my doctor!!! Any other comments/suggestions are welcome.

HeronNS• in reply toExbury19056 years ago

There have been quite a lot of discussions recently on this forum about Prolia. There should be some links to the right of this thread.

Exbury1905• in reply toHeronNS6 years ago

Thanks. I have read some of them.

I don't think I said that I would possibly go back on alendronate...I know there are also problems associated with it but I had no noticeable side effect during the 2+ years that I took it - the reduction in bone density was due to other reasons (I was less active and had not been taking Vit D...)

HeronNS• in reply toExbury19056 years ago

I just found this fairly recent article about Vitamin K1 and K2. The conclusions include the observation that therapy with Vitamin D and Vitamin K2 can result in improvement to the bones matching that provided by bisphosphonates, with no side effects. Which is what those promoting natural methods have been saying for years, nice to have some research to back it up.

And I don't believe I said anything about you going back on bisphosphonates did I? It would have been somewhat out of character for me....

ncbi.nlm.nih.gov/pmc/articl...

Exbury1905• in reply toHeronNS6 years ago

Hi HeronNS, thank you for the link to the research article. Sounds promising. I eat plenty of green leafy vegetables and some plant oils but I don't fancy going back to eating lard Mum used to cook with it.

You didn't say that - I did! I had mean to to include it in an earlier post in case it had some negative bearing on my health. It seems that I should reconsider going back on alendronate...

HeronNS• in reply toExbury19056 years ago

Except if you don't have osteoporosis you don't need to consider going back on AA.

Exbury1905• in reply toHeronNS6 years ago

Oh! So why would my doctor have put me on it two+ years ago when I was first diagnosed with osteopenia?????

HeronNS• in reply toExbury19056 years ago

Because s/he didn't know any better? Or you have some other risk factors. I was diagnosed with low bone mass, aka osteopenia, and recommended drugs. But I had other risk factors, not just age. I was on prednisone for polymyalgia, and I'd had a broken leg (tibial plateau, no displacement) within the previous couple of years which they labelled "fragility" although I've always disputed that. However there was enough of a time lag between the scan and drug recommendation and my learning my actual t-score that I had done a lot of research, so I was very confident when I refused the drugs. So glad I did! My t-score was -2, which is really nowhere near osteoporosis, (a number rather randomly selected, btw). With a new reading after a year of my own natural therapies of -1.6, the drug recommendation was dropped.

Exbury1905• in reply toHeronNS6 years ago

I had a fractured pelvis 35 years ago and broke my wrist 10 years ago...my only other risk factor is age - 74 - but from what I'm reading that doesn't justify prescribing these drugs!

HeronNS• in reply toExbury19056 years ago

No, I don't think so. Certainly not a fracture from half a lifetime ago. And wrists are relatively fragile anyway and in my area are not considered markers for osteoporosis - they only use the hip and check the spine as well.

elery• in reply toExbury19056 years ago

In my opinion, your numbers aren't bad. Certainly not at the point that your doctor should have put you on Prolia. At age 74, I think your numbers are good, but I'm just learning about all this. I am 65 and just learned that my t-scores are -2.4 and -2.5 in hips and -4.3 in spine. I would love to have your numbers. I've decided to not take the medication but to work with supplements, exercise, nutrition, and attitude.

Exbury1905• in reply toelery6 years ago

Elery, Thank you for your reply. I agree. I wish you well and hope that your regime puts your numbers up.

elery• in reply toExbury19056 years ago

Thank you, Exbury1905. I wish you well too. The folks on this forum have been very helpful.

Exbury1905• in reply toelery6 years ago

Elery, thank you. I found the forum by a Google search and I was lucky. Everyone is so helpful and knowledgeable.

sweetsusie• in reply toExbury19056 years ago

Well..stay strong when speaking with your doctor as most of them, obviously, have NOT studied how awful these meds are!!! I cannot believe he prescribed these for you when you don't even have osteoporosis....

Exbury1905• in reply tosweetsusie6 years ago

It's scary. We used to be able to trust doctors but nowadays it seems that many patients know more than the doctors...

sweetsusie• in reply toExbury19056 years ago

That's mainly because of "Dr. Google," girl! People, and I think especially women, are much more aware these days! We do not have to just trust blindly what these doctors tell us anymore. I've gone against my doctor's advice more than once, and he probably doesn't like seeing me, but that's OK! I will advocate for myself.

HeronNS• in reply tosweetsusie6 years ago

Exactly. Provided we choose our sites carefully we can learn an immense amount from the internet.

Angelic_89• in reply toExbury19056 years ago

Just a question - I noticed you're from Ontario, Canada and do you think you may have been prescribed it this easily due to this being a standard practice in Ontario? I have some family in London (Ontario) and my aunt was also put on bisphosphonates in spite of not having the highest risk factor. There can be a lack of medical consistency in different places. Perhaps they are too overly cautious with regards to osteopenia in your province?

Exbury1905• in reply toAngelic_896 years ago

Hi Angelic_89, what you suggest is quite possible. We have MD friends in Ireland and I consulted them. They told me that I would not have been put on Prolia there or in UK...In any case, I am very glad that I found out early on that Prolia is a bad drug!

yogabonnie6 years ago

I say quit the prolia . do not take AA or prolia. You have osteopenia. Actually i think many many many people of a certain age have it. You seem to be doing the exercise right. Listen to Heron and read the book by Lisa Pizzorno . Your Bones. Its terrific. Good luck!

Exbury1905• in reply toyogabonnie6 years ago

Thank you! I have ordered 'Your Bones'

sweetsusie• in reply toExbury19056 years ago

The DEXA scans are calibrated to compare your bones to that of a 25-year-old female, I believe...who the heck has the bones of a 25-year-old woman when you're 40-70 or 80 years old??? That wouldn't be normal in my humble opinion.

Exbury1905• in reply toyogabonnie6 years ago

Has anyone read Lies My Doctor Told Me: Osteoporosis: How the Latest Medical Research on Bone Drugs and Calcium Could Save Your Bones, Your Heart, and Your Life by Harmony Clearwater Grace?

HeronNS• in reply toExbury19056 years ago

I will request my library get it for me through interlibrary loan.

HeronNS• in reply toExbury19056 years ago

I have not been able to get the book. Whether it's not available anywhere in the country, or if it is, it's in Ontario where they've had to cut inter-library loan service thanks to their new let's cut all social services including libraries (and health and education and more but there's better access to beer now) government, I don't know. But usually books like this are available so this makes me wonder....

Exbury1905• in reply toHeronNS6 years ago

Hi HeronNS, I don't think its available from libraries...however it is available as a Kindle book: amazon.ca/Lies-My-Doctor-To... as a paperback from Amazon,ca...amazon.ca/Lies-My-Doctor-To...

I know...we don't want to use Amazon...I haven't read the book but maybe I'll download the Kindle...maybe I can share with you??!

Yeah, one can now buy beer in the grocery store!!! Makes me wonder too.

HeronNS• in reply toExbury19056 years ago

My e-reader is a Kobo, which I only use when travelling. I already checked to see if book was available, but only her books on the paleo diet are listed. One can read Amazon books on a computer. but somehow it doesn't seem worth the trouble.... I really am trying to avoid Amazon at all costs. Mostly I was only curious about a book by someone who calls herself "Harmony Clearwater Grace".

Lara Pizzorno Your Bones is a very good book. Not perfect, but a very good starting place.

Exbury1905• in reply toHeronNS6 years ago

I too only read books on my tablet when travelling. I have Lara Pizzorno's 'Your Bones' and have just started it.

6 years ago

I've been recently diagnosed with osteoporosis after a fall on ice in January. I broke My femur in four places. It never wouldn't have broke had I not fallen very hard. i tarted on Alendronate. I did not feel good about it. I took two and stopped it as I had additional bone aches other than my broken leg. Mild heartburn which was new to me as well as mild to sharp gas pains. Two days ago they were so bad I was beyond. Couldn't eat a thing. My thoughts were that if I continued to put this drug into my system the symptoms would worsen. I am not willing to feel unwell. I will try the natural way with exercise, healthy eating and vitamins. K2 etc

I saw my dr yesterday abd told him I stopped. He readily agreed it did not agree with me. He suggested shots. I said no as the side effects were the same along with more added like Celluitis and possible bladder infections. No thanks. He then said he put his Motherr on AA for five years then 10 as a preventive measure. I replied that the studies are not conclusive on results of taking AA after taking a break from it as to whether or not bone fissures still appeared as they did for those women who took ithe drug decades. Anyway he didn't push it further.

Exbury1905• in reply to6 years ago

I am sorry to hear of your fall. From what I've read here it sounds as though you have made good choices. Good luck Ebiegal.

sweetsusie• in reply to6 years ago

Good for you for standing up to your doctor....a lot of women don't and they end up with terrible health....

sweetsusie6 years ago

DO NOT take the second injection, as I have heard/read that that's when you're in danger of having fractures when quitting Prolia. It's a very dangerous drug....and actually, I would not take any of these bone meds. They should all be taken off the market. Read up and research the side effects of Prolia!!!!

Siamang6 years ago

1 prolia injection for me in Dec2018 - no more! Fortunately Dr has agreed to let me try the bone strengthening work plus supplements! My T score was -2.6 in hip 1.7 spine. Praying it goes out of system

Without repuccasions!

Exbury1905• in reply toSiamang6 years ago

Hi Siamang, Prolia is supposed to be cleared from the system by the end of six months...let's hope so. It seems that 1 injection is fairly safe in that you shouldn't have any repurcussions down the road...Good luck

Patsywade6 years ago

I to am done with prolia. I'm now seeing a nutrition specialist to keep my bones strong. Because I have a diagnosis of osteopenia my insurance pays for it.