Vitamin D and Interstitial Cystitis

[futurehope]

My Experience

Any tips on taking supplements???
I still flare from taking ANY supplements....
i know i need them but i have tried everything....liquid stuff----that stuff is AWFUL....
makes me so sick....the liquid types....i have spent so much money on stuff i either get sick from or just cannot take it since my bladder hates them all....
i do find if i have boost and sip water too then its ok.....
anyone got any ideas on that.....
well let me know.....
i hope everyone takes great care

hugs n better body days

I needed to get my bladder lining somewhat healed before I could attempt anything. For me, 500 mg glucosamine/500 mg MSM 3 times/ day helped. It took a few months.
I'm also on Hydroxyzine HCL 25 mg 3 - 4 /day. Once I was better off, I found the chewable "viactiv" type of Vitamin D hurt my stomach and bladder the least.

I got the idea for trying this form of Vit. D from my gastro. I told him how difficult it was for me to find a form of calcium I could take and he recommended the chewable Viactiv because you are starting to digest it as you are chewing. (BTW, I use the Target brand.) Anyway, he was right.

I guess you have to find what works for you. Of course, I take most of my supplements with meals, except for the fiber, which is between meals so as to not affect absorption of important nutrients.

Hope this helps someone.

[judy45]

vitamin d

Is this the same vitamin D that is usually included with calcium pills? I have been meaning to get back on my calcium and magnesuim pills, but have been flaring for weeks and am terified that this might make it worse.

[stef000]

heya

Any tips on taking supplements???
I still flare from taking ANY supplements....
i know i need them but i have tried everything....liquid stuff----that stuff is AWFUL....
makes me so sick....the liquid types....i have spent so much money on stuff i either get sick from or just cannot take it since my bladder hates them all....
i do find if i have boost and sip water too then its ok.....
anyone got any ideas on that.....
well let me know.....
i hope everyone takes great care

hugs n better body days

[packardaMSU]

People who die of related diseases of lack of Vit D aren't even in an income bracket that can afford sun screen.

[purpleviolet]

d3, too

I'm taking high amounts of D3, also. But it was a bummer to see that the D3 analogue study on chronic prostitis was discontinued because it didn't help in a trial, even though I guess in the test tube it looked promising.

[runningemiles]

I am being sent to an endocrine doctor next week b/c my vitamin D came back 17 and thyroid was off. My doctor told me that a severe Vitamin D deficiency can cause muscle soreness, chronic fatigue, etc. Do you mind telling me what IU means when you talk about taking your vitamin D.

[boukie]

My vitamin d was 10.5 its suppose to be 50 or higher. I am now taking vitamind d supplements 5,000 iu.

[Momelf]

Interesting article. Think I'll make it a point to get out of the office and into the sunshine at lunchtime more often.

Thanks for posting.

Darlene

[kadi]

My mom has to go to the dermatologist once or twice monthly to have skin cancer & precancerous lesions removed. It's not a pleasant process for her to have the lesions burned off or cut out & many have been from her face. While the skin cancer probably won't kill her, like IC it can become a chronic & painful condition...

While vitamin D deficiency obviously needs to be investigated, I don't plan on spending much time in the sun without my hat & sunblock this summer.
Moderation in all things is a good idea.

[sphinx]

My PCP has become big on checking everyone's Vit D levels.....my mom and my husband have both been low, although neither has IC. My husband has been on 2 "courses" of the vitamin, and my mom takes it every other week. I am getting mine checked next week, after I have been off my vitamins for a week. I heard somewhere that low vit D is somehow linked to pain modulation, but I haven't really checked into that, so can't quote a source. Maybe this weekend when I am not so tired I'll look it up (I also have fibromyalgia and feel like a truck hit me, so am laying low, lol)......

Thanks for the article, definitely food for thought.

[sunshine_77us]

VIt D

My thyroid doctor has me taking 50,000 units twice a month of Vit D because mine was low. I haven't got to read the article you posted yet because I'm at work and it won't let me get on there.

[Charisse]

I was tested for Vit D3 levels by my endocrinologist and found to be extremely low. I was supplementing and using a special sunlamp and then kind of slacked off on it. I'm using the tanning bed now and I will start taking my supplements again and see if they help! Charisse

[Moonheart]

What they have found and are going to find more of in the near future, is that the use of sunblock in everything including our clothing, has lead to far more diseases than the few it has claimed to prevent. Very few people a year I think it is die of skin cancer, but thousands and thousands more are dying from other forms of cancer such as colon, lung, etc. that are directly linked to lack of Vitamin D. Not the kind you get from pig skin put into your milk daily, but the kind your body generates on it's own in the right proportions, and going to the right places in your body.

It seems now that Interstitial Cystitis is going to also be one of these diseases. Right along with all of it's sister diseases.

Maybe eventually we'll be told that it's okay to take off our sunscreen and gradually be allowed to go back in the sun, with less and less "protection" (who's being protected? Us, or the company's bankbooks?) and perhaps we'll gradually see these diseases disappear one by one.

[green_the_fish]

Thank you for posting this. I'd be interested in seeing this BXL628 tested in human patients with IC; it seems as if it has potential to be an effective treatment. It is always good to know that there is research being done out there, and that researchers are trying to find a cure.

[blondie45]

Vitamin D

Yes, I agree, very interesting article. Let's keep our fingers crossed that they find something out to help us all out!