what’s the verdict with vitamin C for SD?

[paper tiger]

hey all, sorry. i tried to run a search for vitamin c, but i couldn’t group it together and i just got tons of info on vitamin d.

i know there’s a link between vitamin c and collagen-production, but i’d read a few things ages ago implying that we should still take our vitamin c because in the case of people with SD, we’re malfunctioning and producing a ton of collagen, vitamin c or otherwise.

about four months, in, i think i’m beginning to see good old minocycline-induced hyperpigmentation, so i’d like to try to curb it with 500mg of vitamin C twice daily, but only if the general consensus is it won’t turn me into a scar-tissue machine.

thank you!

[mschmidt]

Hi there–I remember posting something recently about this so, not sure why it isn’t showing up. I’ve had the wonderful hyperpigmentation issue with Minocin as well, and was concerned about taking Vitamin C for the same reasons. However, I spoke with several docs about this and SD, and they all concurred that it’s fine to take. I’ve been doing high doses of iv Vitamin C to treat bartonella, and the only side effect has been lightening of the hyperpigmented areas, especially on my face 😀 .

Also, I take 4,000mg daily, without any side effects. I’m not worried about having SD and using Vitamin C but, that’s just my opinion, and I haven’t read anything that links the use of Vitamin C to worsening of SD, or creating excessive collagen in SD patients to convince me otherwise. The only issue one of my docs has is with iv Vitamin C because it can thin the blood too much. Since I’m only going to be on it for a total of 4-6 weeks, she’s not concerned.

I hope this helps answer your questions. How are you doing?

Maria

[PhilC]

@paper tiger wrote:

i know there’s a link between vitamin c and collagen-production, but i’d read a few things ages ago implying that we should still take our vitamin c because in the case of people with SD, we’re malfunctioning and producing a ton of collagen, vitamin c or otherwise.

I remember researching this, and what you’ve stated there is in agreement with what I found.

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[paper tiger]

yeah, awesome! just the answer i was hoping to get.

and maria, i’m glad to hear your pigmented areas are lightening! that only bodes well for me, as i’m only 4 months into minocin so i can probably reverse this blue stuff pretty quick. i thought i had some bruises on my shins that just wouldn’t heal (i last knocked my shins in mid-oct, so i was getting pretty worried). finally, i clued in that… duh… minocycline does crazy, blue things to people!

i’m… sorta good? thanks for asking! i’ve been dealing with some anxiety issues for a couple of months, but one of the few perks about having SD in your twenties is that you are literally too preoccupied by dumb stuff like boys, clothes, school, and boys to dwell on being sick too much. ha! so i just take my pills and remind myself that i’ll be okay eventually 😉

hope you’re doing well, and thanks again for letting me know about vitamin c!

tracy

[Maks]

I would take it easy on the Vitamin C, it’s great for healthy people but for us autoimmuners it’s not so good. It up-regulates the TH1 response and that’s the last thing you want to do. See study here:

http://www.ncbi.nlm.nih.gov/pubmed/21074755

If hyper-pigmentation becomes an issue you can look into Q-laser treatment, studies indicate great results with little side effects:
http://www.ncbi.nlm.nih.gov/pubmed/11174411
http://www.ncbi.nlm.nih.gov/pubmed/11896769

[mschmidt]

That’s interesting information. PubMed also has studies (412 of them) that site Vitamin C as being beneficial for autoimmunity. http://www.ncbi.nlm.nih.gov/pubmed/7919130

I think, like anything else, moderation is the key. Thus, both my AP docs approving my use of it for hyperpigmentation. I had IPL laser done 4 years ago, before I was sick, and it’s a temporary fix. Unless you slather yourself in sunblock, it comes back. Since Minocin causes hyperpigmentation, it will come back, even after laser treatment.

Maria

[PhilC]

@Maks wrote:

I would take it easy on the Vitamin C, it’s great for healthy people but for us autoimmuners it’s not so good. It up-regulates the TH1 response and that’s the last thing you want to do. See study here:

http://www.ncbi.nlm.nih.gov/pubmed/21074755

I don’t think the results of that study are sufficient evidence to conclude that vitamin C is harmful for people with “autoimmune” diseases. More (and better) research is needed.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maks]

@mschmidt wrote:

That’s interesting information. PubMed also has studies (412 of them) that site Vitamin C as being beneficial for autoimmunity. http://www.ncbi.nlm.nih.gov/pubmed/7919130

I think, like anything else, moderation is the key. Thus, both my AP docs approving my use of it for hyperpigmentation. I had IPL laser done 4 years ago, before I was sick, and it’s a temporary fix. Unless you slather yourself in sunblock, it comes back. Since Minocin causes hyperpigmentation, it will come back, even after laser treatment.

Maria

412 studies? I’d love to see a single study where vitamin C is indicated as a helpful supplement in TH1 based autoimmunity. The study you linked has no bearing on SD. Vitamin C is an immune booster, yes it’s helpful in some autoimmune diseases that are TH2 mediated, but this is not the case here. I would strongly suggest avoiding any supplements that up-regulate TH1.

Personally I would get vitamin C from fruits/vegetables only and not rev up the immune system with high dosage supplementation.

Q-switched laser treatment is superior to IPL treatment for Minocin induced hyper-pigmentation. Sun exposure should be avoided in all cases. It triggers further evolution of the disease.

[Maks]

I don’t think the results of that study are sufficient evidence to conclude that vitamin C is harmful for people with “autoimmune” diseases. More (and better) research is needed.

How about these studies, it’s very clear that Vitamin C up-regulates TH1
http://www.ncbi.nlm.nih.gov/pubmed/19831405
“This study suggests that high dose vitamin C supplementation might attenuate allergic inflammation in vivo via modulating the Th1/Th2 balance toward the Th1 pole”

http://www.ncbi.nlm.nih.gov/pubmed/15790510
“…administered mega-dose of Vitamin C shifts immunity in Balb/c mouse toward Th1”

http://www.ncbi.nlm.nih.gov/pubmed/21074755
“Vitamin C taken up into DCs increased IL-12p70 secretion of these cells by modulating the activation of signal molecules, and thus shifted immune responses toward Th1”

Why would anyone here want to up-regulate TH1 with autoimmunity? the safest option is not to supplement.

[mschmidt]

Maks,

There are clearly 2 schools of thought regarding Vitamin C, just as there are with just about every supplement out there. I’m not a doctor so, I’m not going get into more of a debate about whether to use it or not on this forum because I don’t believe it’s a healthy thing to participate in. In my experience, and ONLY my experience, I’ve had no adverse side effects from using Vitamin C, despite the fact that I have Diffuse Systemic Scleroderma. (And Lyme Disease–which some doctors would say I don’t have SD, just Lyme mimicking SD) I 100% trust my highly respected AP SD doctor who doesn’t have issues with me using it, and I 100% trust my highly respected LLMD that feels the same. There are several articles that describe autoimmunity as an over-excited immune system thus, referring that the body decides to turn against itself for no reason. I’m here because I believe that NOT to be true–I believe in the infectious theory of disease–and that if you can control the pathogen(s) causing the immune system to go awry, you can help reverse the disease process. There are studies out there that say there tends to be a Vitamin C deficiency in autoimmune diseases, mentioning SD as one of them. I don’t think there’s enough studies out there right now with vitamins to know what works and what doesn’t, and I hope that someday, there will be. So, let’s agree to disagree on this. 😉

“Sun exposure should be avoided in all cases. It triggers further evolution of the disease.” Really? Don’t get me started on avoiding the sun because then we’re going to have to start the whole debate about the Marshall Protocol again, which I’m sure works for some people—just not healthy in my opinion. I ran outside all summer and feel the best I’ve felt in 3 years–no disease progression, actually more disease reversal and skin softening. Don’t get me wrong, AP is responsible for that but, I don’t believe the sun is my enemy just because I have SD.

Take Care,

Maria

[richie]

Hi–Sometimes studies dont supply the answer –if we waited for definitive studies on the effectiveness of minocin in treating diffuse scleroderma –a good percentage of us just might not be around now —-There is nothing definitive about harmfulness or benefits of vitamin C in scleroderma –Its a matter of taking your doctors advice or or applying ones thoughts –If you would look up DR Blau at The U of Stony Brook in NY –hes against using vitamin C in Scleroderma folks applying the logic the C promotes collagen production –There are other folks whos hyper-pigmentation has been helped dramatically by using vit C —and have taken large doses without incident —ME –over the past two years I take 1000 mg daily -just for well -being –I have strong reservations however when I read about 5000 mg daily being used to lighten pigmentation –to me that could be courting problems —
richie

[mschmidt]

Well put, Richie. My 4,000mg daily dose is for 4-6 weeks to help treat a co-infection of Lyme thus, the non-concern about it with SD. I know people who have done less, and a lot more with SD for hyperpigmentation, none of who had ill effects. BUT, again, I defer any type of “advice” to the individual patient, under the care of an experienced SD doctor–I’m certainly no expert!

[JeffN]

I would just like to note my experience with taking Vit. C. I don’t believe that my results are common but perhaps worth noting.
For me when I take Vit.C I get increased joint pain, the results are very repeatable. Every time I have tried it going back to the 80s when it was being touted as a boon for avoiding colds I get joint pain. I had not taken it in years but last summer I tried it again as I was experiencing some hyperpigmentation. I tried a low dose to start. Anyway about a month on and more joint pain, I gave it up and it takes about three weeks for the pain to subside. So I a not saying not to take it but if you do and notice more pain than usual it may not be the SD returning just try giving up the C.

[PhilC]

@Maks wrote:

How about these studies, it’s very clear that Vitamin C up-regulates TH1
http://www.ncbi.nlm.nih.gov/pubmed/19831405
“This study suggests that high dose vitamin C supplementation might attenuate allergic inflammation in vivo via modulating the Th1/Th2 balance toward the Th1 pole”

http://www.ncbi.nlm.nih.gov/pubmed/15790510
“…administered mega-dose of Vitamin C shifts immunity in Balb/c mouse toward Th1”

http://www.ncbi.nlm.nih.gov/pubmed/21074755
“Vitamin C taken up into DCs increased IL-12p70 secretion of these cells by modulating the activation of signal molecules, and thus shifted immune responses toward Th1”

Although interesting, the results of those studies are insufficient evidence to conclude that the effect of vitamin C, in normal doses, is actually harmful for persons with “autoimmune” diseases. One cannot just look at one effect of vitamin C and ignore the other functions that it serves in the body. It is very easy to be misled into reaching an incorrect conclusion by only looking at one small piece of the puzzle.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maks]

@PhilC wrote:

@Maks wrote:

How about these studies, it’s very clear that Vitamin C up-regulates TH1
http://www.ncbi.nlm.nih.gov/pubmed/19831405
“This study suggests that high dose vitamin C supplementation might attenuate allergic inflammation in vivo via modulating the Th1/Th2 balance toward the Th1 pole”

http://www.ncbi.nlm.nih.gov/pubmed/15790510
“…administered mega-dose of Vitamin C shifts immunity in Balb/c mouse toward Th1”

http://www.ncbi.nlm.nih.gov/pubmed/21074755
“Vitamin C taken up into DCs increased IL-12p70 secretion of these cells by modulating the activation of signal molecules, and thus shifted immune responses toward Th1”

Although interesting, the results of those studies are insufficient evidence to conclude that the effect of vitamin C, in normal doses, is actually harmful for persons with “autoimmune” diseases. One cannot just look at one effect of vitamin C and ignore the other functions that it serves in the body. It is very easy to be misled into reaching an incorrect conclusion by only looking at one small piece of the puzzle.

Phil

The evidence is clear. Those are multiple studies from different researchers that show direct up-regulation of TH1 which is directly implicated in autoimmune disease. This evidence is far and above beyond any evidence you have presented that shows Vitamin C as beneficial in TH1 autoimmune diseases. Show me a single study where vitamin C helps TH1 based autoimmune diseases.

Again I will stress this, the safest option is to just eat your vitamin C from fruits and vegetables. To ignore these studies and merely discount them because they don’t fit in your pre-existing position & notions is a danger to science.

We even have a poster JeffN in this thread who directly correlates vitamin C supplementation with worsening of autoimmune symptoms.

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