Vit d2 dosing for AI joint pain...any new studies/info?

cbaird99

I am going to be starting AI's next month, not sure which yet, and I am trying to get the jump on non-pharma help for musculo-skeletal pain. I am seeing some postings, including a current Baylor clinical trial, on weekly megadosing of D2 to help with the pain. Has anyone got any input on this, from their own experience or their dr's? Drawbacks, dr. hesitancy, reasons not to at least try it??

Meadow

I have been taking vit D3....I dont know what the difference is really...but I take it as studies have shown it may reduce recurrance. Do you know the difference?

cbaird99

d2 is plant based and water soluble and is out of thebody in 7-10 days so it does not build up. It seems to be of use in relief of AI muscle/joint pain

leggo

For pain relief, 4000 IU/day. Sorry, no study or link to back it up....just what doctor told/showed me.

leggo

I should add though, the study was for pain relief only, not cancer. What effect that dosage has on cancer cells was unknown in the literature.

labbieb

I'm going to be starting soon too and I'm also very interested to see if anyone has been able to try this. Not sure if this has been posted elsewhere but there were very positive results from this study from Washington University School of Medicine in St. Louis.

http://news.wustl.edu/news/Pages/22523.aspx

cbaird99

Here are a few of the links to articles I was reading, as well as to a current Baylor clinical trial on Vit D and AI's:
http://holisticprimarycare.net/topics/topics-a-g/cancer-care/1086-vitamin-d-may-prevent-tamoxifen-associated-joint-problems.html

http://www.womenshealth.northwestern.edu/blog/breast-cancer-aromatase-inhibitors-vitamin-d-and-muscle-pain

https://clinicaltrials.gov/ct2/show/NCT01988090?term=nct01988090&rank=1

http://annonc.oxfordjournals.org/content/early/2013/03/06/annonc.mdt037

I am definitely going to talk to onc about it when we meet mid-May to talk AI's. I have decent D3 levels now, mid-40's, I take 1000 daily and have for years, but it seems to me that once the meds start I am going to need more and I don't want to get behind the pain curve.

 

peggy_j

What's the advantage of taking a mega-dose once a week vs. a smaller amount each day?

One of my docs warned me against taking mega-doses of Vit D, because it can lead to toxicity. I think he said to not take more than 10,000 UI per day, even if I was trying to ramp up the level in my body. Here's more info from the Mayo Clinic.

http://www.mayoclinic.org/healthy-lifestyle/nutrit...

Are you planning to monitor the Vit D level in your blood? My Vit D level had been at the low end of normal and so I upped my dosage to get it closer to the high end. I upped my dose by 1000 UI, waited a few months, got tested again. I was surprised that it didn't increase as much as I'd hoped, so I upped it again, waited and got retested. I had been taking about 2000 UI per day and I'm now at about 4800 UI (including D in my multivitamin + calcium supplements) + whatever is in my food + whatever my body makes when I'm out in the sun (um, wearing sunscreen). Some people increase their dose in the winter.

leggo

I think the OP was talking about D2, which as far as I know doesn't have the same toxicity in high doses as D3. I could be wrong, though. 

Jennie93

My MO prescribed a weekly megadose (30,000 IU) of vit.D for joint pain caused by tamoxifen. I asked why once a week, not every day? She just shrugged and said it didn't matter.

cbaird99

Jennie93, are you still on this megadose? Is it D2 or D3, and can you tell that it has helped?

Yes peggie_i, I was referring to the water soluble D2 which apparently does not have a toxicity issue. I still have to have this conversation with the onco, trying to get informed first, I would assume/insist on having the levels monitored and perhaps starting with a lower weekly dose. I am not sure if it is best to just start off with it or wait to see if you do have pain? That is probably the 10 billion dollar question lol:)

 

muska

Hi cbaird99, if I understand correctly you haven't started AI yet. I would recommend you start taking it and see what side effects you get if any. Also, please remember that those side effects usually get better as the body gets used to the drug over five to six months. My own experience with anastrozole has been pretty good so far. Whatever stiffness I had at the beginning is mostly gone now. I found that regular exercise helps a lot. I have been on this drug for a little over a year now and don't pay attention or remember I am taking it any longer.

My understanding of vit D in this context is, it helps to maintain bone health that might suffer when one takes AI. Vit D is also often recommended to cancer survivors b/c studies have shown that cancer patient often have vit D deficiency. However, too much vit D can be toxic - as someone already mentioned.

My MO put me on Vit D, 2,000 units a day as soon as I was diagnosed b/c my vit D level was just below the norm and she wanted it to be in the 50 -60 range. She checks it every six months. I have been taking D3 since July 2013 and my Vit D level is about 50.

Spookiesmom

Before bc, I was seeing a pain doc for fibro, he put me on 5,000 mg D3 daily. My level then was 17. What a difference in my pain. Then my MO told me to take the same D3 and calcium1200 daily. My level now is 44, doc is happy, I feel good.

april485

D2 is very different than D3 in terms of the build up and toxicity. D2 is water soluble and leaves the body through sweat and urine if not used. It is easily excreted. If it works for joint pain, I want it big time! I am looking forward to finding out. I took 50K units of D3 a while ago, two weeks apart due to a low D3 level which was at 18. I am now in the low normal range at 29-31. I hope that D2 works!!

Jennie93

cbaird, yes, I am still on the weekly dose, for almost a year now. It is D3. My MO does not do any blood tests whatsoever and has never tested my vitamin D level at all. She says this amount is safe long term, but not to go any higher. I have read articles that say it really helps. I can't say it's made a big difference for me, but the pain was getting so bad I couldn't do my normal everyday things, and since going on the vit. D it has stayed about the same, not getting worse at least. I ended up having to quit tamoxifen and switched to anastrazole. It has a worse reputation for joint pain, but doc says everyone is different and you never know until you try. I haven't been on it long enough to say whether it's different for me.

cbaird99

Jennie93, I find it very curious that your dr. is not doing periodic bloodwork...re the vit D and other things, have you ever asked why, or just req'd it anyway? Is your pain level still keeping you from doing the activites you want to do? This seems unacceptable to me, I realize I am speaking before I've had to start AI's, but I'm afraid if that becomes the case I am going to be tempted to chunk them. Have you tried any complimentary things to help with the pain, acupuncture, massage, etc.?