50000IU Vit D2, Osteopedia and Aromatase inhibitors

Anonymous · September 2018

My doctor prescribed 50000IU Vit D2 because a recent bone density test shows that I have Osteopedia. She's prescribed this amount of Vit D2, three times a week in the past, but I stopped because it got me very sick.

Now my Oncologist says that I'll be taking an Aromatase inhibitor (assuming I can tolerate it), which I understand can lead to bone thinning and weakening and a higher-than-average risk of broken bones.

So what the heck am I supposed to do? Any of you face a similar problem? Thank you.

SimoneRC · September 2018

Can you try taking the 50,000 unit pill less often? I have Vitamin D deficiency and take one pill per week with no issues. Perhaps you can begin with that and see how you feel, assuming your doctor agrees. I feel so much better in terms of joint pain since taking the Vitamin D! Also, did you get the Rx Vitamin D or just take the OTC? My doctor says only the Rx as you really don’t know what your are getting with the OTC

oxygen18 · September 2018

viewfinder,

Of couse it's best to check with MO about this, but here are some thoughts. Have you had your blood Vit D levels checked recently? what blood level was that dr aiming for? what kind of dr is she, who prescribed 150,000 IU of Vit D per week, was it an MD? what max dose have you been able to tolerate?

If you haven't had your D blood levels checked in quite a while, I'd start from there, and of course get as much load bearing exercise as possible, including walking.

The MO might recommend something like Zometa or Prolia.

Best wishes.

Anonymous · September 2018

Thank you oxygen18

I have not had my blood Vit D levels checked recently that I know of. I've never even heard of a blood Vit D level. I've had numerous blood tests since my cancer diagnosis in April. Wouldn't that be something my MO would have checked (I do have a call into her)?!

My Primary Care Physician prescribed 50000IU Vit D2 after my bone density test last week...three times a week. She did not prescribe 150,000 IU of Vit D per week.

I had an appointment with my PCP today but canceled it. I've done nothing buy run to cancer doctors, surgeons, hospital tests after test and surgery. I go for CT Film Markings this Thursday morning, then start radiation therapy the following week. I'm so weary from running to all these doctors that I serioulsy need a break, mentally and physically.

Anonymous · September 2018

Thank you SimoneRC,

I have a call into my PCP asking about taking a lesser does and gradually increasing it. I'm also going to ask my Medical Oncologist. The vit D2 is being prescribed for osteopedia. Don't know if the dosage required is different for Vitamin D deficiency. I'm 72 years old and know bones become an issue at my age without taking medicine that negatively effects bone health.

Lula73 · September 2018

Hopefully the D you’ve been prescribed is D3 and not D2 and the 2 was just a typo. Study after study shows D3 to be more effective than D2 (it’s more readily available for use by the body than D2 that the body has to convert to D3 before it can be used). Hopefully it’s a softgel and not a tablet - softgels are more readily absorbed than tablets. Hopefully there was a misunderstanding on the dosing...50,000IU is typically once a week (50,000IU total weekly dose), not 3 times a week(150,000IU total weekly dose). Taking more than 50,000IU is typically reserved for treating active bone loss from corticosteroid use (very specific) and doses that high can cause various health issues including nausea, vomiting, weakness, fatigue, sleepiness, etc. Vit D is vitally important to bone health but also to overall cell health. D is an essential building block needed for proper cell replication. Low levels of D can result in errors in cell DNA which in turn replicate with the error. If the immune system doesn’t recognize it or it replicates faster than the immune system can clear it, these cells become cancer. Vit D in a cancer patient is crucial to winning the cancer fight. Up to 1/2 of the general population are deficient in Vit D (typically due to sunscreen and not as much outdoor time without sunscreen) and more than 1/2 of seniors are deficient. So there are many solid reasons for your dr to prescribe it and for you to take it. I would give a 50,000IU weekly dose of D3 a try. It’s significantly less than the dose that made you feel ill and it is a therapeutic dose to raise low D levels. You may be able to drop to a lower dose for maintenance once the levels are up. Be sure you’re going getting in at least 600-1200mg of calcium a day and magnesium to aid absorption and uptake. All are important for bone health. I’m no longer on the prescription D, but I do take Solgar brand 10,000IU D3 5 days a week and 1200mg Solgar brand liquid calcium with magnesium. Don’t get caught up in how many mg/IU of this supplement/med vs that many of a different supplement/med. There’s no correlation...it’s all about the effective dose of a certain active ingredient to effect the desired outcome which may require higher doses of 1 med/supplement and lower doses of another.Helpful links to studies on D & Calcium, Vit D dosages and side effects, and Solgar brands mentioned:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2621390/

https://www.webmd.com/vitamins/ai/ingredientmono-929/vitamin-d

https://www.vitaminshoppe.com/p/solgar-vitamin-d3-iu-10000-120-softgels/sl-1176

https://www.vitaminshoppe.com/p/solgar-calcium-magnesium-w-d3-strawberry-16-oz/sl-1190

Michelle_in_cornland · September 2018

Ask about Tamoxifen instead. With osteopenia, your really need to consider all your options. I take Tamoxifen and osteopenia in my hips. I also take Vitamin D 50,000 units per week.

Anonymous · September 2018

Lula73, My Rx bottle that I have from the last time my PCP prescribed it says Vitamin D-2 Cap, 50,000IU. It's a gel cap and I was to take One Capusel Every Monday, Wednesday and Friday. It is not vitamin D-3.

Michelle_in_cornland, thank you. I'm wondering why my doctor prescribed such a high does three times a week.

Lula73 · September 2018

viewfinder- I’d take the time to research the latest on Vit D therapy (the first couple of links i posted are a good place to start) then quiz your dr on why D2 and not D3 when all the literature points to D3. And openly discuss the problems you had in taking it 3x week before, that it is a rather high dose since you’re not on corticosteroids, and that you don’t want to go there again. There are several posts trying to help you here including mine. No one is trying to refute the information you’ve stated, rather everyone is trying to clarify and let you know what the latest standard of care is when it comes to Vit D therapy. Sadly not all doc’s standards are up to date and we have to stand up and advocate for ourselves vs just blindly following what the doc says just because they say it in order to get what we need

Anonymous · September 2018

Lula73 wrote: "There are several posts trying to help you here including mine. No one is trying to refute the information you've stated, rather everyone is trying to clarify and let you know what the latest standard of care is when it comes to Vit D therapy."

Not for a moment did i think anyone was trying to refute the info I've shared. On the contrary, I'm thankful for the information and links to resources. All of you have actually given me knowledge that I have choices.

Bosombuddy101 · September 2018

Lula,

A very big thank-you from all the peeps reading your very informative post. I had no idea vitamin D was an essential building block for proper cell replication and therefore crucial for cancer patients. I was diagnosed with low levels of vitamin D after my cancer diagnosis and my PCP prescribed 2000 IU of vitamin D3 per day until I get my levels up again. It's odd that the MO never even mentioned this or tested my levels.

voraciousreader · September 2018

i hateto be Debbie Downer, however, this is a most recent study on Calcium and Vit D.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5394528/

voraciousreader · September 2018

years ago, I read this book by Harvard Med professor and clinician, John Abramson. In the book he explores the results of clinical trials and how they affect the practice of medicine. in one chapter, he explores the controversy of osteoporosis. He is a review from his most important finding:

http://ahrp.org/evidence-based-medicine-overdosed-america-the-broken-promise-of-american-medicine/

Based on his finding, and the most recent study which I linked above, I question the use of calcium and vitamin D with respect to bone health

Lula73 · September 2018

bosombuddy- I think the MOs are relying on the PCPs for the most part. Everyone staying in their lane so to speak. If PCP and MO aren't using the same electronic health record system they have no way of knowing what the other has ordered, when it was ordered and what the results were. If PCP ordered it and MO ordered again insurance would end up denying one of them and now you're on the hook for it. Do you know how low your D was? Mine was 10.

Viewfinder-I'm sorry if I read too much into your responses. Another thing no one has mentioned is asking your MO or PCP about using prolia in addition to vit D, calcium and magnesium since you'll be starting an AI. It wouldn't hurt to request a copy of your last Vit D labwork. Most docs want the level to be between 50-70. Has she's said nothing about calcium and magnesium? If she never ordered a Vit d level, you need to question why she's prescribing it blindly. I hope this helps.🍀

Anonymous · September 2018

My doctor never mentioned anything about prolia, calcium and magnesium. To be fair, I canceled my PCP doctor appointment yesterday. Now I realize I probably could have gotten more info about the test. However, delaying it has given me more knowledge from this thread.

I checked online at my medical portal. Seems I did have Vit D Bloodwork in January.

Name: VITAMIN D,25-OH,TOTAL,IA Value: 26 L

- Vitamin D Status 25-OH Vitamin

- Deficiency: <20 ng/mL

- Insufficiency: 20 - 29 ng/mL

- Optimal: > or = 30 ng/mL

- For 25-OH Vitamin D testing on patients on

- D2-supplementation and patients for whom quantitation

- of D2 and D3 fractions is required, the QuestAssureD(TM)

- 25-OH VIT D, (D2,D3), LC/MS/MS is recommended: order

I understand very little of the about except that I have a low value. The information about mentions both Vit D2 and D3, however, I don't know if that's a recommendation.

Also, I stand corrected. She recommend taking the high does D-2 two times a week this time. I canceled the order because my insurance didn't cover it and she had ordered it directly the pharmacy. So I rechecked.

MexicoHeather · September 2018

This has been an interesting thread. I take 2000 IU of the D3 daily. However, I took this much prior to my BC diagnosis for 5 years: Looks like those cells just kept marching on...

When my Oncologist described AI risk, I answered, "I'm a little white woman, gonna get it anyway." He just laughed at me profiling myself.

My husband, who has full osteoporosis, takes calcium with D3. He also takes prolia injections now. DEXA scan shows improvements!

voraciousreader · September 2018

https://jamanetwork.com/journals/jama/fullarticle/2678617

Anonymous · September 2018

50,000 IU at once seems like an enormous amount to take all at once. My MO wants me to take Vit D and checks levels every six months. My latest test was 74, and she thought it was a bit high; she's concerned about Vit D toxicity, and high levels can cause blood tests to report high calcium in the blood which makes MOs worry--since she says high calcium levels can sometimes indicate cancer in bones and we don't need a scare like that due to very high Vit D intake instead.

https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108

My levels are always higher in the summer because I'm outside more.

My naturopath rxs my Vit D drops, and I take about 4000-5000 IU a day; interestingly she doesn't seem concerned when my D levels are in the higher range, like my MO does. Usually though they are around 67, which is fine with both (me too).

Claire

Anonymous · September 2018

I just spoke to the my MO's nurse about an hour ago. The oncologist, who sent me for the bone scan, recommends 500mg of calcium 2xday and one Vit D2 - 1000 units. This seems right in line with what has been recommended here.

My sister recommended I also take Vitamin K.

ctmbsikia · September 2018

This was an interesting thread. viewfinder I'm glad you spoke to the nurse for better understanding. I take 50000IU of Vit D once per week. It is generic for Drisdol which is actually D2 not D3. It was prescribed by my primary after blood test showed the deficiency. The MOs bloodwork showed my Vit D readings broken down In 3 parts. It can be confusing. I couldn't tell for sure but seemed liked I was in range. I have since added caltrate with D3. I am only taking 1 per day. The calcium is 600 mg and recommended is 1200mg. I also take Crestor so I skip the 2nd calcium supplement. It says don't take those within 2 hrs of each other. I don't want excess calcium in my bloodstream. I get another 110mg of calcium from my vit C supplement so that will have to do. Currently working on Vit K thru diet.

50000IU Vit D2, Osteopedia and Aromatase inhibitors

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​50000IU Vit D2, Osteopedia and Aromatase inhibitors

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50000IU Vit D2, Osteopedia and Aromatase inhibitors