Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Liked by Mamacita, Alumna Mentor, Chris Trout, Volunteer Mentor, Leonard, parrotqueen
Hi JK, The cost of Tymlos is like a rollercoaster depending on when and how much my medicare supplement is paying. Last year it ended up being approximately $131/per month with the nominal amount of $90 in October, November, and December. So far this year it has been around $300/mo. I have a by mail supplement and because of the COVID-19 purchased 3 months at a time. It was on backorder through my local pharmacy. So the manager found me folks to chat with at the manufacturer and a specialty pharmacy. My Endocrinologist and staff started calling their other patients and providers to see if anyone had a "tide me over" supply. What a wonderful world this can be.
I wish I could be more helpful……I just don't do $$$$rollercoasters well.
I was pretty darn overwhelmed with that kind of assistance.
May you feel safe and protected.
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@gailBL, @jk, @lillypaws, @nancy1228,
I may have some good news for those of you who are on Tymlos or possibly Forteo. I may be in something greater than the glory hole. Have any of you worked with or heard of Optum Specialty Pharmacy. This pharmacy only fills prescriptions for specialty medications like Tymlos because of the refrigeration requirements until opened, and the distribution system which is by subcutaneous self-injections. Please let me know if you want, need, or just would like to have contact information.
The reason that I am passing this along is that I am on my second refill and I place a 90-day order to avoid backorder problems with COVID-19. I have been treated like a valued customer and have had no problems with the shipment. j
And now….here is the other news. Last 90 days, my 30-day refills were $300. That is much better than the $1000 every 30-day refill last year with the local pharmacy. This week, each 30 day supply was about $35 with Optum. The order also includes the needles and touchpads at no additional charge.
Do you know what that might mean for Forteo and/or Tymlos patients? Please share your "secrets" with me or ask questions for me to hopefully answer.
May you all be free of suffering and the causes of suffering.
Liked by John, Volunteer Mentor, migizii
Thanks for your feedback, Sue. My mother took Prolia and ended up in the hospital with severe low blood calcium. So, I'm reluctant to start that drug. Also, my Endo did say what you have commented, that with Prolia there is no stopping it. Doctor favored Reclast over Prolia because she indicated Reclast stays in the body longer once you stop infusions, thereby being able to take off a year or two. I am very active, exercise, eat super healthy, take additional vitamins, and am otherwise healthy. It's just my bones that are in such poor shape! I'm very frustrated by the fact that women with osteoporosis just don't have better options!
I am new to this website. I had Osteopenia many years. I have taken calcium supplements over thirty years but still regressed to Osteoporosis. I have had three injections and am due for the next in November. After the second injection I noticed that my jaw did not feel the same so I asked my dentist to take an x-ray. He reported it was ok. About a month after the third shot which was administered late because of Covid-19, on June 5th, my gums became extremely sore and pain developed in my jawbone. I just had an x-ray last week and I need to have two teeth extracted. The pain in my jawbone still exists and I have called my doctor and left a message stating I do not want any more Prolia injections. I have had no reply from her. I have not yet had the teeth extractions. I am extremely upset and don't know where to turn for help.
Liked by JK, Alumna Mentor
Hello @julie2020, Welcome to Connect. I can understand why you are upset and I also would be upset. I have osteopenia and degenerative arthritis and I am supposed to be taking 1200 mg daily in calcium. I took it for a month or so but it really binds me up so I stopped it and try to eat healthier and lose some weight at the same time. Here's some information to support the symptoms you are having with jaw pain and more.
Study Quantifies Dental, Jaw Risks With Denosumab — 10-year data suggest oral issues common:
You may also be interested in the following article — 11 ways to increase bone density naturally
When your doctor calls back, can you ask her if there are any alternatives that are safer?
Liked by lioness
@annloh570 I would like to add my welcome to this great website where we all care and help with what we can. As John pointed out these two websites have a lot of good information on them . I have osteoporosis and won't take any of the meds the Dr's prescribe as my girlfriend was on Fosamax and had the jaw problem then a injection with side effects. As a nurse I have seen to many people with side effects . I prescribe to the natural way . My Dr has me on the calcium citrate 1200mg split in two . This is the better way to take your calcium. My rheumatologist wants me to go on these meds like Fosaman but I told her I won't when I talk with her Aug 3rd via teleconference I will explain to her . You can do it the natural way and you won't have side effects . There are pros and cons with people some can and others can't like me . All I can tell you is be proactive you know your own body better then the Dr. does . Hope to hear from you again .
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I have a similar situation. Due for my third injection next week and developed gum swelling and pain two weeks ago. Need an extraction. I also had to have an extraction while on forteo two years ago. I was told there was no connection to the meds. It must either be the meds or the osteo because I have never had these type of tooth problems before! Please keep me posted on your experience and I will do the same. I am also waiting to hear from my dr.
Liked by John, Volunteer Mentor
@lesleighjarrett It is hard for me to believe that the meds have no connection to all the problems I have read on this website. I will definitely keep you posted and please do the same. I have a feeling my doctor will not call me back. I was unable to speak directly to her and left a message with her assistant.
@lioness. Please explain what calcium citrate "1200 mg split in two" means exactly. I, too, have osteoporosis and have also refused any of the meds doctors have urged me to take. I also have only one kidney stage 3(b) and diabetes, so I have avoided vitamin supplements, but maybe I should reconsider. My dentist strongly urged me not to take these meds, and he's not steered me wrong yet. I am very interested in this discussion. My only advice? Wear good-fitting, safe shoes and do balance and strength-building exercises. Walk. I see folks walking so poorly in stylish shoes that are unsafe. If we don't fall, we won't break bones.
@trishanna Hi What I meant was take 600mg in morning and 600 at night . Since you are a kidney patient you should check with a CPKdietician on naturel meds. I take more then just calcium but I don't want to steer you wrong so find your CPK dietician in your area or talk with you kidney Dr. Either one can give you advice . There are so many different kinds of calcium and magnesium also . Vit D3 is important also so ask about all 3 . One exercise I like is leaning against the wall for strength building . Any strength building is o.k. I just like this one . Good luck come back and let us know what the Dr/dietician says. I'm interested in knowing .
@johnbishop I take 1000 mg of calcium citrate and it does not bind me up. I'm still on Tramadol since my surgery and that can do it. I take Miralax, you can get generic miralax on Amazon. You have to be careful, if you take too much of it you may have diarrhea. I take less than a capfull now. I'm also on Tymlos, had side effects at first, but none now. Take care. I had degenerative arthritis too that caused a scoliosis and stenosis In My L-4 – 5 and S-1. That was the reason I had the surgery in June. The surgeon at Mayo had to start at T10 to my pelvis. I think you all ready know that from posts before. Take care.
Liked by John, Volunteer Mentor, lioness
@lilypaws before I stopped taking calcium I think it was calcium carbonate tablets and that was what gave me the most trouble. Then I tried the Viactiv calcium chews which were a little better but not much. I've got a cabinet full of Miralax, Metamucil and a generic brand and go between those and a bottle of stool softners which help but I don't think it's really good to take them that often. I will have to try the calcium citrate to see how well that goes. I also just bought a yogurt maker, some BioGaia Gastrus Chewable Tablets and some Organic Inulin Powder to help make the yogurt from a recipe by @LeeAase — https://social-media-university-global.org/2020/05/best-yogurt-ever/. I just have to make the time to do it 🙂
Try incorporating chia seeds and flax seeds into your diet.
Glad to hear you took the plunge, John. Once you get the hang of it it only takes about 10 minutes to mix the yogurt (and then you just wait 36 hours for it to be done.) Totally worth it!
Liked by John, Volunteer Mentor, Kelly Hahn, Connect Moderator
I had major constipation until my Neuro put me on taking my Sinemet with Apple juice. Seems it utilizes more of the med faster- and helps the constipation a lot. Ask your doctor.
@johnbishop Do you realize that prunes are recommended for osteoporosis also? The recommended dose is 6 a day. I tried that but went from my general state of being bound up to the opposite so I am experimenting with just how many I can eat without it being a problem.
Liked by John, Volunteer Mentor, migizii, sue225, Kelly Hahn, Connect Moderator
@contentandwell just googled and found that a study published in "Osteoporosis International" found to get the bone benefits all you need are 5 to 6 prunes per day. Could also offset the calcium supplement side effect:)
Liked by John, Volunteer Mentor, JK, Alumna Mentor
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