I've noticed a recurring theme in many threads about low Vitamin D. At my physical my PCP said my Vitamin D was very low. I'm thinking this must be a side effect of TKI or a characteristic of people with CML based on the anecdotal evidence. Wondering who has been told they have low vitamin D and what, if anything, they have done about it. I think it is an additional challenge because I have to stay out of the sun a lot more.
Low Vitamin D
Posted 06 July 2012 - 03:47 PM
Posted 06 July 2012 - 05:22 PM
Hi Lucky: First let me say I hope things are going a little bit better for you and your family. The post by Don King regarding Side Effects of Tasigna, he mentions his low Vitamin D. I could not help out on Tasigna side effects, because I am on the Gleevec. However, it does seem like a lot of people are having this problem. I have never liked thesun, therefore, I was always blaming it on the fact that I do not get enough sunlight. Apparently there are a lot of things going on in our bodies that we are not aware of. I have a lot of problems which could be from my low Vitamin D.
I started taking Vitamin D supplements, and my last blood work was good. I am also taking Fish Oil Capsules, which did not believe would work, and when I saw my PCP 2 months ago after taking just 1 capsule a day she was amazed at how my Triglycerides came down considerably. I have always had high Triglycerides, so this was a positive thing for me. Just buy a bottle of Vitamin D, and take it everyday with your Gleevec. I do not buy any specific VItamin D. I shop in Shop-Rite for my groceries, and I just buy their brand.
Posted 06 July 2012 - 06:06 PM
Our TKI drugs inhibit a few enzymes that we would prefer they leave alone, and this has some downside effects. TKI drug inhibition of PDGFR can upset the balance among cholesterol, Vitamin D, and mineral metabolism, since these three are interrelated. Yes, it takes cholesterol for the body to manufacture a usable Vitamin D. TKI drugs change the way our bodies metabolize cholesterol, and it is possible that this also interferes with Vitamin D production. Insufficient levels of Vitamin D interferes with mineral metabolism, which can result in both muscle and bone pain. So these issues can be connected, although it is not clear how closely they are tied together. There appear to be other factors involved as well, such as staying out of the sun because of skin sensitivity caused by the TKI drug. The sun produces Vitamin D very efficiently, so it does not take much exposure to be beneficial, and it can be stored in the body, so even a few minutes of sun exposure from time to time is very helpful.
Posted 07 July 2012 - 01:40 AM
I too had low Vit D2 levels, my D3 were just within normal range.
Here is my earlier thread for abit more info if you like: http://community.lls.org/thread/15391
Been taking Vitamin D supplement, but havent had a new test done yet to see if it has helped. I think im going to start taking fish oil as well, as ive read it can be good for the skin, and that is something i really could use at the moment. Oh my poor skin.
Posted 07 July 2012 - 01:56 AM
As well as taking Fish Oil - which is also supposed to help prevent sun burn and thicken skin, you could also try taking Evening Primrose Oil for your skin's dryness. I take the Evening Primrose Oil at the opposite end of the day to the Gleevec. I was taking both prior to starting Gleevec and haven't had issues with sun burn (though I am quite fair anyway), thinning skin or dryness. Though I didn't manage to escape the Gleevec rash initially. LOL
Posted 08 July 2012 - 02:08 PM
This subject has been a bit of a curiosity to me. A few yrs ago I started hearing people talk about their low Vit D. Is testing for Vit D a fairly new routine test? I've not heard of anyone that has been tested and had normal Vit D levels. Anywhoo, I take the Vit D and so does my husband. I can understand mine being low, but I cannot understand how my husband has low Vit D. He is a long distance road biker and spends several hrs in the sun every week, year after year. He can also drink a gallon of milk with Vit D every 36 hrs. What does a person have to do to have normal Vit D levels just from healthy living?
Posted 08 July 2012 - 06:04 PM
Not sure why your husband has low vitamin D, but apparently it is quite common in Australia - we've all been avoiding the sun here for years.
Posted 02 August 2012 - 01:10 PM
Thank you GerryL, i will look into that.
Sorry for the late reply
Posted 03 August 2012 - 06:24 AM
I was told from the very beginning to take 1000 IU of D3. One time I accidently bought a 2000 IU bottle and I've been taking it ever since. I've only had my D checked once and it was fine.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 17 August 2012 - 11:07 PM
My PCP wrote a prescription for me to take 1.25 mg Vit D2 once a week. Funny thing is, in the last 12 wks. I only took two pills and I recently had labs that indicated my Vit D is normal now.
Posted 17 August 2012 - 11:38 PM
Hi: I was having a low Vitamin D Level, and I have been taking 1000 IU of Vitamin D3, and it has been keeping me in the normal range. I take it everyday with all my other meds. Don't stop it just because your in the normal range. We all need vitamin D. So many people are deficient of Vitamin D. It seems like we do not get enough of it in our daily living.
I also started taking Fish Oil which my doctor recommended for my Triglycerides, and I did not think it would work. It has lowered me almost into a normal range for the first time in years. So some of these things really work.
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