Vitamin C

[orchid]

Hi,

I've been reading about minocycline causing pigmentation issues or tooth discoloration. I've also read that large doses of vitamin c can help it.

Any experiences? What does the discoloration/pigmentation really look like? Is it really that terrible? Anyone have pics they can post?

Just wondering…I still haven't bought the “Arthritis Breakthrough” so maybe this topic is covered there?

Thanks!

[Cheryl F]

Orchid,

I believe that the hyperpigmentation and the tooth staining are two separate issues.  While there may be exceptions to this (as noted in prior thread discussions of tooth staining), for the most part, the tooth staining is superficial (like a caffine stain) and can be removed by good and frequent cleanings.

The skin discoloration is another matter.  You may want to do a search on the Old RBF BBoard to read past posts on this issue.  There are several (or more) posts from people experiencing the skin hyperpigmentation.

The skin hyperpigmentation seems to show up two ways.

First, it is not uncommon for people to experience what is sometimes referred to as “The Mino Tan”.  This is a type of hyperpigmentation, that tends to occur soon after beginning the minocin, if it is going to happen at all.  For most people, their mino tan is even and nice, my daughter gets asked all the time whether she goes to a tanning salon.  From all I have read, I beleive this is a function of the fact that these drugs tend to make the patient hypersensitive to the sun, ie, if you burn, you will burn worse, if you tan, then you will tan more.

The other type of skin hyperpigmentation is very different and can cause blueish/grayish patches on the skin.  We have seen posts where patients report that they have a bluish/greyish color encircling their lips or on other places of their face, or the legs and arms.  This effect is thought to be related to the chelative properties of minocin.  It is also commonly known that long term use of minocin will discolor the patient's bones.  There are studies that clearly prove this relationship between bone discoloration and minocin use, and they seem to conclude that there is no long term health issue.  I have personal experience with this issue, last March, Jess had surgery to put a broken elbow back together.  The ortho surgeon came out and said her bones are slightly greenish (I knew about this potential effect so I was not surprised nor alarmed).  They sent a sample to the pathology lab, it came back that it was the mino and the doctors had no concerns (and these were not AP doctors).

Some of the posts in the archives talk about the use of Vit C to abate the problem of hyperpigmentation.  Another potential would be to use Doxy which is not known for this side effect.

Cheryl Ferguson

[annie from hawaii systemic sclero]

Hi Orchid,

I've been on oral mino for about a year, and on me it looks like a dark tan, albeit an uneven one.  I found some pics on Yahoo images.. just type in “minocycline skin”.   Blessings, annie

[Elizabeth]

Hi, i have been on Mino for about 3 years. About 6 months I started noticing black and blue looking spots on my cheeks and around my lips.  Also a couple on my legs.  I went to Dr. T in boston and he said it is a side effect of long term use of mino that is not very common (about 2 to 5 percent) He has put me on half dose of mino and I am taking a very absorbable type of vitiman C. It has started to fade just a little. I was told it would disappear after 3 months or so if I discontinued minocin. It is not permanent. But, I still am wondering what I do since the half dose is not working as well. I go back to the doctor in Sept and will address that issue.

[shela sd]

I have the discoloration around my mouth.  It is very dark and i'm self-conscious about it.  I went on half dose of minocycline from 200 to 100 and it really didn't help.  then i tried doxy because i read that you need to get off mino for a while, and I have thyroid problems.  But the doxy was unacceptable, i had terrible digestive issues and now I am back on mino, 100 mg.  actually the marks were kind of fading with the doxy ( i think, maybe not)   Now i'm just resigned to it.  its not great, but i'd rather have marks than the other complications with scleroderma.  i enjoy being alive too.

if anyone else has more positive news, i'd love to hear it.

shela:cool:

[JBJBJB]

[user=156]shela sd[/user] wrote:

I have the discoloration around my mouth.  It is very dark.

When I was on 400 mg daily Plaquenil, my lips had the discoloration, it became very dark, especially upper lip. It's been almost a month after I took off plaquenil, the dark color is still there.

After I started minocycline, my skin color became really dark with greenish color. It's very ugly.

http://www.medworm.com/rss/search.php?qu=Minocycline&t=Minocycline&f=drugs&r=Any&o=d

If I remember right, one of the members mentioned high vitamin C could cause joint pain. So I only take about 700 mg vitamin C.

:JB

[JBJBJB]

Minocycline induced thyroiditis, causing black thyroid pigmentation. Sounds very scary.

http://www.liebertonline.com/doi/abs/10.1089/thy.2008.0048

“We describe a 31-year-old woman who had ingested minocycline for 18 months prior to presenting with hyperthyroidism and a palpable thyroid nodule. There was no evidence of Graves' disease or autonomous nodule on thyroid scintigraphy, and a clinical diagnosis of thyroiditis was made. Fine-needle aspiration biopsy of the palpable lesion suggested papillary carcinoma, and the patient underwent a total thyroidectomy. Intraoperatively, the thyroid gland was found to have a striking black discoloration. Subsequent histological examination revealed the accumulation of pigment globules within the apical cytoplasm of the follicular cells, and associated findings of a drug-induced thyroiditis. The tumor nodule showed features of infarction and was felt to represent a necrotic papillary microcarcinoma. We postulate that in addition to causing black thyroid pigmentation, chronic minocycline use in our patient resulted in thyroiditis and subsequent hyperthyroidism. The papillary microcarcinoma was probably a coincidental finding.”

[orchid]

Hmmm…

thanks to everyone for your replies. I'm still not sure I even HAVE RA but if I do, I thought minocycline would be the first thing I would try. It's sounds like the best possible route but if I have to walk around looking like an oompa-loompa, that doesn't sound too much fun either!!

Cheryl F – sounds like your daughter is responding well to AP, I'm so glad! She's so young and lucky to have such a great mom!

So, basically vitamin C doesn't work and is BAD for RA? Doesn't sound promising. I realize some people are in such extreme pain that you don't really care as much about the skin discoloration, but I'm only 30 and this treatment doesn't sound so great after hearing about all that it does to your skin.

From reading on here, doxy seems to cause A LOT of digestive issues and doesn't have the same benefits of mino for RA…?

Thanks again to everyone — very helpful as usual!

[Maz]

[user=266]JBJBJB[/user] wrote:

Minocycline induced thyroiditis, causing black thyroid pigmentation. Sounds very scary.

 

Hi JB,

Hope this study helps to calm your concerns about “Black Thyroid.” Seems it's a rather innocuous hypermigmentation issue…not unlike the “green bones” syndrome that Cheryl described with her daughter, Jess.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1900569

As the article you posted states, the thyroid malignancy this woman experienced was thought to just be an incidental finding…not related to minocycline use. As for the hyperthyroidism and thyroiditis, I'm more inclined to believe it was the result of the malignancy than minocycline use….but I'm just patient who already had hyperfunctioning nodules and was on the hyperthryoid side before starting mino, myself!  😉

Peace, Maz

[orchid]

Thanks Maz, when I read about it causing issues with the thyroid as well – I thought, OH BOY! I already have thyroid issues so that would not be good.

Well – it sounds like it's actually not an issue – phew!

Does anyone with RA do the mino/vit c combo? Is it good/bad? I've read both.

Also – why are some on doxy (for RA) if the mino is the best and only option to stop joint destruction from happening. From what I've read only mino can do that?

Thanks again…

[Maz]

[user=515]orchid[/user] wrote:

Does anyone with RA do the mino/vit c combo? Is it good/bad? I've read both.

Also – why are some on doxy (for RA) if the mino is the best and only option to stop joint destruction from happening. From what I've read only mino can do that?

Hi Orchid,

A number of people here have thyroid issues and “autoimmune” thyroid issues are pretty commonplace…seems these diseases run in packs. RA and Hashimotos or RA and Lupus or Sclero and RA…list goes on and on. Mycoplasma can get anywhere and they're opportunistic, setting up house wherever they can thrive best.

I take mino and vit C every day, along with some other supplements. My doctor recommended it from the beginning to help avert hyperpigmentation issues. When I did some research on this for myself, I came across a British study (wish I kept it now) where they did biopsies on the blue/grey discoloration that some people get as a manifestation of the hyperpigmentation syndrome. The researchers found that these patches had concentrated levels of iron in them….the implication being that mino has some effect on iron absorption or assimilation in the body. This was just one study, though. 😉 Further to this, though, and I thought a rather interesting, possible connection was that someone posted an article about how pathogens sequester iron from the host body in order to thrive.

So, my internalised rationalising made me wonder if mino was somehow sequestering free-iron back and depositing it in subcutaneous tissue somehow. Of course, this isn't proven and just my own mental meanderings, but it's interesting to note that many people with RA are anemic, as part of the disease process. When on mino, over time, this seems to correct itself. So, I figure mino must be having some effect on blocking pathogens from stealing iron for their own ends.

Another possible reason for hyperpigmentation is that mino binds to minerals in the gut…calcium, magnesium, iron…and that it could be that when mino is taken with some foods or too near foods, the mino binds to these minerals and, rather than working as it should, it congregates in these blue/gray patches instead, not being properly assimilated in the body.

The interesting thing is that it is recommended that when iron supplements are taken, that a person also take Vit C. This is to enable the iron to act as an oxygen transporter to raise hemaglobin levels when someone is anemic (not the same type of anemia experienced by RAers). So, my own personal rationalisation for this is that Vit C in some way transports the iron around the body and helps to assimilate it properly, rather than just dumping it in tissues.

These are all just my own mental meanderings…have read some studies and they just seem like possibilities to my unscientific mind! 😉

I have come across one Lyme doc recommending as much as 5000mg for his Lyme patients, whether on mino or not, for its antioxidative properties. Vit C can be hard on the stomach and should always be the buffered variety (with rosehips) to help protect the stomach, as far as I know. However, I'd still err on the side of caution and would take moderate amounts of Vit C. My daily intake is 1000mg. One website I encountered said no more than 2000mg.

Some people, like JB, find that Vit C increases their pain levels. I don't know why this would be, but we are all unique and must find what suits us best. Sometimes it can be hard to figure out what is causing pain and what is alleving it, especially in the beginning when herxing and flaring comes on so randomly. I guess one just has to play with the Vit C a bit and see if it has this effect.

As for the doxy or mino question….Dr Brown used both tetracycline, the first generation of tetracyclines, and doxycycline, the second generation. He had success with both and probably varied who got what depending on how a person responded. I wish we could all see his case notes….wouldn't that be a revelation! 😯

When minocycline came along, it was designed to be well tolerated for teenagers and their acne, easily absorbed with food. According to NIH mice studies (mentioned in The New Arthritis Breakthrough) that were done prior to the MIRA trials, it was found that minocycline had some immune-modulating properties that had significant measurable effect on arthritis. The theory derived from this study was that mino caused T-Cells to take up too much calcium, causing them to die off. This would make some sense in light of how mino binds to minerals and also that the tetracyclines work in concert with the immune system.Again, though, my interpretation. 😉  However, it could well be that all the tetracyclines always have worked in this way….as well as many other ways, as Jo pointed out in a study on mino that she posted recently when we were talking about MS. Put it this way, I think all the tetracyclines work in the same ways and probably have a number of immunmodulating actions that have even been discovered yet, in addition to their anti-microbial, bacteriostatic properties. Mino is just considered to be the newest generation of oral tetracycline…a new, improved version, so to speak. It may also have greater immune-modulating properties than doxy or tetra, but just don't have the science background to really expand on this….what does appear, at least to be somewhat, clear to me, is that all the tetracyclines bind to minerals and that mino has some greater effect on iron and how it is used by the body.

From accounts I've read here of others who choose doxy over mino, it is because they can't tolerate it for some reason (mino-induced lupus, dizziness or stomach issues that doesn't resolve after a few weeks) or are fearful of hyperpigmentation or have experienced serious hyperpigmentation issues. Or, their physician prefers to use doxy instead of mino, for some particular reason…perhaps a person has low ANA titres (possible lupus signs) or a clearcut diagnosis hasn't yet been made (Lupus or RA, for instance). Some old timers on mino will also rotate their abx at intervals to have a break or if they plateau. I'm sure others here will chime in here as to why they are on doxy as opposed to mino. 😉

I think it's worth bearing in mind, though, that for those on doxy, Dr Brown used it with success for many years before mino came on the scene.

Orchid, much of this is my own speculation after reading various articles, so please just take these parts with a pinch of salt. Others who have done some research will have drawn their own conclusions on the same theme.

That was quite a lot of waffling, eh? Hope I haven't confused you more!!!

Peace, Maz

 

 

[orchid]

Maz –

Thanks for all of that wonderful info! Since I keep hearing a lot about IRON I have to wonder what these results mean:

Bilirubin 2.6 (0.1-1.2)
Iron, Serum 182 (35-155)
Ferritin – 28 (10-291)

I'm told the high bilirubin is “gilbert's syndrome” (benign) and they did an ultrasound on my lower abdominal organs = no gallstones. So, it must be that. Doctors don't seem concerned but there has to be something to it?

I think both of my sisters also have high bilirubin and both had appendicitis attacks (I've read possible bile duct blockage can cause) at age 32. Could just be a freak occurence but I still find it strange. Two more years till I'm 32, so maybe it will be 3/3!

The whites of my eyes always have a sort of yellow tinge and I have these orange/yellow looking calluses on my middle fingers (palm side) since this Spring. They don't itch or anything – sort of hurt once in a while, though. Dermatologist thought maybe eczema. But just on two fingers – exact same finger on each hand. Not very noticeable except to me. I see these little dots on the inside – almost like a wart but not quite. They seemed to go away for a little while then came back. Gross – I know!

Makes me wonder if my liver is flushing toxins out properly and how I would do on minocin because of that? This is just me talking out loud! I'm clueless concerning all of this – that's why I'm here…looking for answers!

Thanks again

[Maz]

Hi Elizabeth,

Wikipedia has a write-up about ferritin and its relation to iron in the body:

http://en.wikipedia.org/wiki/Ferritin

Generally speaking, ferritin levels correlate with iron in healthy individuals. In someone with RA, however, these levels can be off. As far as I know, supplementing with iron for the anemia caused by RA is useless and potentially toxic, if ferritin levels are low. In spite of my own very severe RA, I haven't had an iron/ferritin problem…always well within range, so I haven't done much study in this context. Other may be able to provide better informed insight with regard to your labs.

Re: the appendix, I was reading an article on compuserve's newsdesk earlier in the year that discussed studies that contradict previous thought that the appendix was a vestigal organ, easily expendible and of no value. Turns out the appendix is a respository for good intestinal fauna (good bacteria) and. Sort of puts a new spin on appendicitis.

Re: liver function and elevated bilirubin….I learned a little bit about liver and gallbladder function when I had some GB probs a few years ago (sorted out with liver flushing. Thing is, stuck gall stones aren't the only cause of backed up bile. Can also be due to fatty liver or just a sluggish gall bladder due to sludge. GB sludge isn't visible on ultrasound, but can significantly slow the ejection of bile. I don't know much about Gilbert's syndrome, though.

The lemon and olive oil detox drink that many use here is a very helpful AP protocol adjunct….a very gentle liver flush. You could try this for a while and see if it helps…certainly won't hurt. Really, in truth, any of the usual rheumatologic drugs would be hard on the liver…not just abx, if there is an existing problem. Longterm methotrexate use, for instance, can cause many types of organ failure, including liver, kidney and heart. That said, your best bet is to have your doc consult with an experienced AP physician, like Dr S, in Ida Grove, Iowa, who has seen many complicated cases during his long tenure of treating rheumatic patients with AP. You could then ask for his insights about longterm AP and its possible effects with regard to your Gilbert's.

Pretty mixed bag here…but all great questions….just wish I knew more about everything you asked, but maybe someone here will be able to provide better insight.

Peace, Maz

[orchid]

Maz –

Orchid here, I think you may have confused me with Elizabeth. Not surprising, we're all bombarding you with questions (sorry!) but you have so much good advice for us newbies!

Thanks for the interesting info on the appendix, etc. I've always wondered why my sisters both had this happen at the same age – and we all have thyroid issues, too, so we sort of have parallel health histories.

I will definitely speak with my doctor about doing a conference call with Dr S. I have heard many good things about him. I wish he were closer (he's about 7 hours from me). I probably drive the doctors crazy with all my questions – but I feel much better when I'm fully knowledgeable about a topic, especially my health!

I'm like Jennhere, where I feel like I sort of brought this on myself. I'm had a very traumatic, emotional year and I sort of dove into a deep depression and beat myself up and wish I could have stayed stronger and maybe I wouldn't be dealing with (whatever it is I'm dealing with – RA?). I know deep down it's not my fault and not anyone's fault but you know how the mind works — always asking WHY WHY WHY? I read the post where the doctor told the patient he “brought this on himself” – what a @&$# doctor.

But, it seems so unfair that when you're already dealing with something difficult – something else always seems to pop up. 🙁

I have some hope coming here, though.

Thanks again…

[Maz]

Orchid…you're right! Sorry I confused you with Elizabeth…sorry Elizabeth! :blush: I noticed myself editing a lot of my own posts – mind all over the place yesterday.

Further to the appendix thing, for anyone who has had it removed, the inference from the article I read is that it's probably a good idea to supplement with probiotics on a regular basis for life. Won't do any harm, but if the appendix is a kind of recepticle for good fauna and it's no longer there, then gut fauna could well become imbalanced. Many of our diseases do seem to begin in the gut. In The New Arthritis Breakthrough, a researcher called Rothschild discusses how intestinal infections are linked to spondyarthropies. With about 70 or 80% of the immune system originating in the gut, it's no wonder that many of our diseases can be traced back to here.

You're so fortunate to be only 7 hours drive from Dr S!  Seriously, I'd be in my car and on my way, as we speak – mind you, I have Canadian blood coursing through my veins, so long distance driving isn't such a biggy! :roll-laugh: Everything is relative, too…not everyone needs IV therapy and, although you haven't yet been diagnosed with RA and just a possibility for you, it's probable you'll do well on minocycline, catching this nice and early. At least you know he's within reach, if you should need to go. He's retiring around Christmas time, I believe, but have heard from others on the board who have been to see him recently that he intends to still care for his rheumatic patients…what a guy!

Orchid, I understand what you mean about stress. We could beat ourselves up over and over again for having these diseases. Infectious theory probably isn't the whole answer, but combine any disease with shock or prolonged stress and the immune system takes a hit. The physiology of our bodies and its fight or flight response just hasn't caught up with the modern age. So, if we want to blame something…the main offenders are probably evolution, bugs and industrialized society. :roll-laugh: All things that none of us can change! That said…human arthritides have been around since the beginning of time. The skeletal remains of ancient bones found in North America show RA existed long before the modern age of stress. Not only that, there is strong evidence to show that it didn't appear in Europe until much later, adding to the evidence of infectious causes, when population masses became more mobile. (This is mentioned in The New Arthritis Breakthrough). So, what is the answer? I don't think anyone really knows – not even the medical world or they would have found a cure by now…it's a combination package, that's for sure. The good part is that we have AP and it works in a good many cases. I was just re-reading the chapter on Dr S in the book and, by his estimates, he's brought approx 80% of his patients to credible remission or significant improvement. That's a pretty stellar stat!

The other interesting thing I've learned from being so sick is that I just don't sweat the small stuff as much anymore…what a bizarre twist of fate!

Peace, Maz

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