NEW OSTEOPEROSIS PATIENT: just got the... - Bone Health and O...

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NEW OSTEOPEROSIS PATIENT

11 Replies

just got the diagnosis and endocrinologist want me to have reclast infusion. I would be so grateful for patient experiences pro and cons

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11 Replies
Smilerv profile image
Smilerv

Good Morning GMA1954!

I have had a Reclast infusion and tolerated it well. The only symptoms I had were a handful of days throughout the year with some nausea.

I stopped because of needing a tooth extraction (lower jaw) and was very concerned about the jaw dying.

Anyway, that scared me into not wanting to do it again.

Good luck with your decision.

in reply to Smilerv

Thanks for your comment. I am leaning towards not doing the infusion.

KatVin profile image
KatVin in reply to

Curious as to what your alter will be?

ratoncita profile image
ratoncita in reply to

Same here.

HeronNS profile image
HeronNS

Do you have numbers from your DXA scan? I didn't have OP, although I was led to believe I did for some time, until I could get my T-score (-2, OP level is considered -2.5). During that time this is what happened, and I hope my experience will help you find some things that will help, whether or not you take OP meds:

healthunlocked.com/pmrgcauk...

It's also important to be tested for "secondary causes of osteoporosis".

osteoporosis.ca/medical-con...

KiaMarie profile image
KiaMarie

hi, welcome to the group! I’m newly diagnosed and decided against the western med way. I am on a natural alternative and hope my next scan will show improvement. I just crossed over from osteopenia to porosis

Keep in mind taking infusion or any medication for osteoporosis is a life commitment. I’m not ready for that! Every Dr that I seen and mind you it was 5, they went right to the meds spouting out 5 or 6 different ones.. now they don’t know me or my body.. it turned me off! If you want to know more about what I’m taking, let me know

Oh by the way, I’m a nurse and I was appalled to just be put in a category they put me in!

Hopefully this helped look up the side effects before you start anything..

Sincerely

Southerngirl2787 profile image
Southerngirl2787

Take a breath and your time for a decision that works for you. This is not an emergency. Read, research, and then make an informed decision. I knew little to nothing about the OP meds a week before my diagnosis, some many years ago. Then the more I read, learned, the more I realized I needed to know a "root cause" of my OP, as I was 50 and it was severe, total surprise to me. Know that most doctors have a drug rep to educate them...sad but true. Some make good money off these drugs as well, and don't understand which ones may be right for you and what doesn't work for you. Is your doctor running bone marker testing? It's valid and should be run before starting any med...most say it's irrelevant and don't bother, because they don't understand and aren't "bone experts". That includes Endocrinologists...mine is nearly worthless, I have asked for the bone markers twice, and she says they are irrelevant and rarely used outside of academic settings...she's really a diabetes doctor. I recommend an excellent book Great Bones, by R. Keith McCormick, DC...he learned about OP and fractures the hard way, he's had dozens of them.

ROSModerator profile image
ROSModeratorPartner

Hi @Southerngirl2728, If you would like more information about bone markers do look at our (Royal Osteoporosis Society) resource strwebprdmedia.blob.core.wi... on the ROS website theros.org.uk/information-a... . We work with experts in the field to provide up to date, evidence- based information. If you don’t find answers on our website, or to discuss your own situation, contact our specialist nurses on 0808 800 0035 (UK). Best Wishes, ROS Moderator

Thatchcottage profile image
Thatchcottage

I had two sudden fractures 20 months ago because I tried to lift a very heavy item. The doctors tried to make me have infusions if all kinds. My score is is on the border. I have refused because of the side effects and I also spoke to Osteoarthritis society help line and after talking to them I still decided not to take anything.The only thing I have is vitamin d and calcium. I do a lot of walking and cycling and I have some muscle building exercises.

Do look at side effects, you know your body and ordinary go only know what the reps tell them . The hospital and doctors all try to get you to take stuff they don't seem to offer any natural ways.

Good luck with your decision

Nannie-C profile image
Nannie-C

breathe, bones don’t change overnight so you’ve time to read up all you can about it and pros and cons of the bone meds. Also vital that Dr fully checks for secondary causes as some things can be treated or cured letting bones improve 🤞🏻

Kaarina profile image
Kaarina

This user has left the site. When one does this their thread is left for others to read the replies but their username changes to Hidden. The last reply from the member did say that they were leaning towards not doing the infusion.

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