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What should I know before starting Evenity?
Sept 4th, 2024
EVENITY
Like many of you, I have started from shock, to fearfulness to being
apprehensive what medication to take for severe osteo.
My numbers are L -5.2 hips -3.6 and -4.0
I hoped to be able to improve the numbers with diet and exercise.
Eventually I realized that it might be possible with osteopenia
but probably not with severe osteoporosis. Dr Beck
Onero program is not available in Vancouver, yet.
I am trying to learn hip hinge and squats
eventually I will find a a physical therapist/kinesiologist
with osteoporosis experience.
I do the stairs as often as I can, increasing how many times:
until hopefully add ankle weights.
My threadmill speed is 2.2mph..the goal is to increase every few weeks:
method: increase, count 24 seconds - go back to starting baseline – several times:
the goal is 2.5mph which is maintenance: and the larger goal is 3.1mph
which is osteogenic.
Diet: aside from the calcium and and Vit D: am looking into natural
sources of Vit K (Natto is not something I could consume regularly).
and have 5-6 prunes daily.
So…have finally made the decision to go with Evenity, if approved.
Have not used anything in the past: anabolic or anti resorptive.
Thank you for ladies from Canada for mentioning CTX. It is available
in Vancouver (sorry I didn’t mark down names) P1NP and TBS is not available.
Neither is REMS. I got a CTX – which we pay out of pocket here, so is
Vit D out of pocket unless it’s requested by a specialist. And TBS is
not available either. My CTX was in the 500.
Would be glad to hear comments, or shared stories.
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@maieva I have learned to be wary of most PT's. I found a good one who does massage only and has taught me safe ways to move. I walk a lot and do tai chi.
Evenity's action peaks, as I remember, around day 11 or so. Most people do seem to do fine on it and have good results. Good luck!
Thank you. I feel that if I hadn’t read all these posts, I would not know any information. For one thing I didn’t realize we would have to be on one drug or another forever. I thought when we reached a safe level of bone density that we could stop taking drugs, but from my understanding in these posts is that this is not true. I will never take Prolia, I do know that for sure.
@maieva the erm "drug holiday" means we stop and are monitored until it is clear we need more treatment. Since bone loss is inevitable after menopause it may be that more natural methods won't hold our gains once we reach our target. But surely there will be times when we are off meds, even if due to time limits on each med! I am going to really probe my endo on this! McCormick treated his with Forteo and Fosamax and has been doing holistic methods since, but his DEXA is, I believe -3.3 at this point.
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2 Reactions@maieva It is a very worrying situation to know you have severe bone thinning and a greater chance of fracturing than you once had. It's not an exact science but you can do a lot to make yourself safer and at the same time do fun (or needed) activities. There are programs, books, videos etc with good exercise/movement/physical therapist experts etc that can help you learn general principles of moving more safely and effectively. That said there are lots of "experts" in exercise and fitness that can give very bad advice.
From what you have said I would guess that your PT is not knowledgeable about osteoporosis. You mentioned somewhere that your PT said you won't fracture that easily. Well, if you are anywhere in the -4.0 range you have a significant chance of doing just that, fracturing easily. Not saying you cannot be active but you certainly need to first be aware that you are at risk. The truth is the best starting point.the
All that bad stuff said I am very physically active and I was in the negative fours in my spine until Evenity. I was physically active before and all during my year on it. I do bodyweight/core/theraputic exercises twice weekly. I lift weights following a modified version of the LIFTMOR protocol twice weekly. I do Beat Saber and Synthrider virtual reality games again twice weekly. And I walk a lot. I enjoy all those things.
The two games are a substitute in a sense for badminton and pickleball. The vr games are fun, as challenging as you want them to be and they do not involve sudden twisting turning types of movements that can put you at greater risk. I know some people play pickleball or badminton without extreme and sudden movements and it may be fine for them to play those sports. I like to do things all out so I quit the two sports rather than run the risk. The two vr games I mentioned I can do all out but much more safely than the two sports.
Seems like I'm just talking about myself here but what I'm trying to say is that if you learn more about exercise and movement, what puts you at greater risk and what puts you at less risk then you can be quite active and have fun.
Best of luck getting good improvement with Evenity.
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2 ReactionsThank you for all the encouragement! I’m learning as I go, and yes my spine is -4.0 right now, so I’m being really careful. I don’t want to start having spine fractures because once it happens, it’s seems to be impossible to correct and my spine doctor said I have a great spine for someone age 66. But it doesn’t matter if my bone density is so low. I did have my spine decay score up to 3.5 when I finished my first year of Reclast, but my second year on Reclast, it went to 4.0. I’m hoping for great results with Evenity. My vitamin D was also extremely low at 21, so another reason for the problem. I bought the good liquid vitamin D with K2 from Thorne who I trust and I just add 3 drops (3000) to my ok every morning. Hopefully that helps. I know I need to do more and now that the horrible summer is over in AZ, I will be walking a lot. We’ll see how it all works out.
Question: I bought calcium capsules DV Calcium (as DimaCal®
DiCalcium Malate)†
250 mg from Thorne.
I am drinking OJ every morning which has 325 mg of calcium and 2 cups of almond milk at 350 each=750 mg. For a total of 1075 each day. I’m not sure that I even need to take the supplement, especially since I’m probably getting more calcium in bits and pieces through my other meals. Mayo Clinic Endo said 1000 to 1200 daily. Advice?
Also, when should I get these levels checked? I don’t see her for another year.
Don't forget k2
@maieva both oj and almond milk are fortified with calcium so I don't think that is really getting calcium from food. I mean no different from supplements. I was taking 800mg supplements (allergic to dairy) on Tymlos and have upped it on Reclast. Some drugs raise calcium and some lower it!
@maieva
I’m 65 and started evenity in May after a big fall and surgery. I too was concerned about the black box warnings — I go to UNC in North Carolina— felt really good about the doctor explained it and read the head of the departments comments on it.
Have had no side effects what so ever and will finish in May ….the next question is how to lock in the gains with another drug.
Good luck and hope you to will have an easy go with Evenity
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1 Reaction@maieva As @windyshores has already stated using OJ and almond milk to get calcium is not really getting food based calcium. It's just food with calcium added to it. Like sprinkling a powdered calcium supplement on your food. Also, almonds are quite high in oxalates which bind with calcium and other minerals and therefore interfere with your bodies utilization of those minerals. There seems to be disagreement as to how much oxalates interfere in that way but I think a conservative view might me to keep oxalates low. As in daily use of almond milk might not be a good way to get calcium.
Personally I think people are over reacting to possible dangers of supplements to the point that many people with osteoporosis may not be getting enough calcium. Sure it's probably best to get any nutrient from food but if you do not get 1000-1200mg of calcium in your diet, my thought is add the calcium in with a supplement to get it to that level.
Of course there are those that believe you don't need all that calcium anyway but I'll leave that one for another day.
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