Skin Pigment Change

[Cangirl]

Hello Everyone:
I just had my 2nd rheumatologist appt. this morn. I asked about the AP protocol (didn’t mention I had started already) and got an interesting response. I am the first patient that my rheumatologist has that has ever asked about this therapy. Her response was when I asked if I could try it was, “it’s a very old and slow treatment.” She wanted to know why I wounldn’t start on a “cocktail” of up to date medicine that would treat the RA faster. I told her I wanted to do just that treat the RA and not just the symptoms. She wanted to consult with her colleague in the office as this other rheum. had a few patients on minocin, and she knew dosage better. The other rheum. came to see me and tried to talk me out of it as she said “It will turn your skin blue” and that she had 2 patients that it happened to and one was just in yesterday and had a blue patch on her face and it will never go away! She wanted to know if I wanted to take that risk.
I am not sure if they were trying to scare me (did a little) but I told them that I understood the side effects. I took lots of information with me to show about success, safety and dosage. I told them that the protocol was “Low and slow” with pulsed dosing. I don’t think that they understood too much about dosing as my rheum gave me a prescription for 100mg DAILY for two weeks and then 200mg DAILY for up to three months. I tried to explain that this is a long process and that results may not show in 3 months. She just said that we’d both be learning and we’ll see.
I am glad that she has agreed to try the AP with me, but at the same time, I wonder about their dosing strategies. Did the other rheum’s. patients turn blue because the dosing wasn’t administered correctly?
I am going to continue with my current 50mg M,W,F for another week and a half and then I’ll try an increase. I think that I am still herxing as I have had this all-over flare for a week and a half unlike anything I have experienced before. I hope that it is the herxing and not my RA getting worse cause my rheum. told me that my factor for joint damage was a high positive. I liked Phil’s method but I have capsules instead of tablets so my increase will double. I think that I am on my own with the proper protocol and will have to learn by trial and through the experiences of others here.
Also, my rheum. wants to monitor my liver and kidneys with this. Is this something that others have experienced as well?
I have read so many successes with long term use and nobody has experienced bluing of their skin or any complications with liver or kidneys. I will be taking Liposmol vitamin C as I read that this can help with pigmentation side effects.
Any thoughts on these issues would be greatly appreciated.

Feeling a little scared about everything but determined to see it through!
Thanks,
Kelee

[cavalier]

Kelee i did experience some bluing when I did my doc took me off the mino & put me on zithromax but I have scleroderma & Lyme not RA & everyone is different in how they will react. I was on Liposomal Vit C at the time too. However I have eliminated the last of the bluing patches I had. It took about a little over a year for the last of that to go away – most of it left rather quickly but there was where this came on 1st at still remaining til that time. So mine was not permanent but we stopped shortly after this started too & didn’t continue with the mino – perhaps that makes a difference?
This is not a common reaction i dont think – but I was on mino as a teenager for about 3 yr’s so maybe i had built up a titch of resistance – not sure but certainly not a new med. for me.
I was put back on mino again for a 2nd time by this doc to try it – I was not on it for more than a few mo’s when i had the yeast reaction so i was taken off this but during that time i had no bluing occur.

Jill SD Lyme Cpn. Canida is on the wane.

[Cangirl]

Thanks Jill!
I really appreciate your comments. It is so hard at this point, especially when I have never been I’ll or had to take heavy duty meds. I hope that I am successful with the minocin, but at least I have the option of other meds. that are available and that are not toxic like doxycycline. It’s nice to read what others have experienced!
Take Care,
Kelee

[DianaW13]

Hi Kelee,

I have been on Minocyline for one and a half years now with no skin reactions (and I have been on 200mg daily for the past 7 months or so)

Did I read earlier that you are in Ontario? Where abouts are you? I am in Ottawa

All the best,

Diana

[Cangirl]

Oh Hi Diana,
Yes, I am in London. I believe I saw a post from you once before. Sorry, I wasn’t sure how to respond before. Was and still am just getting the hang of things.
Would you mind if I pick your brain a bit? Can you tell me a bit about your experience going through this process. Did you start on 200mg. right away or work up. My rheumatologist just kind of put the scare in me today when I told her that this is the therapy I want, and then her colleague said I may turn blue. Also when she said to take it every day, made me think that was why her patient had pigmentation problems.
I think that I am worrying to much and I should just see what happens.
Look forward to chatting with a neighbour.
Kelee

[lynnie_sydney]

One of the issues with minocycline is that it can cause blue/gray hyperpigmentation and this is more likely in the higher daily doses. In one study I read out of UK, when biopsies were done on these benign skin patches, turned out they were high in iron, the cause of the discoloration. Maybe not so surprising in light of tetracycline’s ability to cleave to iron and other minerals in the blood.

viewtopic.php?f=1&t=7036&p=59874&hilit=blue#p59874

This quote (from a previous post by Maz) may help to explain what causes the pigmentation issue. It doesnt happen with everyone and can be reduced or eliminated by taking Vitamin C which binds to the iron. It is also only a cosmetic issue and is certainly reversible.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[DianaW13]

Kelee, I started on 100mg MWF. Having said that, I was on name brand Minocin at that time. It is MUCH more potent than the generic Minocyclines. I took this dose for several months before Dr. S suggested 100mg daily. This worked very well for me until I ran out of the Minocin (which as you know is no longer available here in Canada). Hence, I had to double the dosage to 200mg daily.

Having said all that, I was on other meds when I began AP so I had the long road to weaning those, as well as increasing the Mino. At the moment I am taking Celebrex 100mg bid and 200mg Plaquenil bid as well as the Minocycline. I will begin weaning Plaquenil in a month or so, after all of the Spring weather (flares) (again, Dr. S’s advice). He has been a wonderful help to me.

Right from the get-go I had regular blood work and had copies sent to me each time. This way I was able to keep a record and compare physical/lab symptoms. You will begin to see/feel how your body feels and will be able to discern whether you are flaring vs herxing. It will get easier, just hang in and read the book and this site regularly. The support here is fantastic to say the least.

I have also found that eliminating all gluten a great help – don’t know if you have considered this yet, but I would encourage you to at least give it a go for a month or two to see if you benefit.

All the best to you Kelee. Hope this helps,

Diana

p.s. I have been active in trying to spread the AP word on the Canadian Arthritis Society forum. Sure could use another voice or two on there!!!!!!!!!!!!!!!!!!!!!!

[Cangirl]

Thanks for sharing your story!
I too am on the same dosage of celebrex. Yes, I eat gluten free. I started an elimination diet two days after my diagnosis. Along with wheat I haven’t had dairy, or soy and very little sugars (only from fruit). I didn’t find any real trigger foods yet. Still haven’t tried too many re-introductions as I have been flaring or herxing so it’s hard to tell what’s food related. Eating as many whole foods as possible. No more processed items.
Is the minocin that we get now a weaker substitute than the original? I read that the company stopped making the brand name here.
I have also been asking for copies of my blood work each time so that I can keep track of my numbers. My rheum also wants to put me on plaquenil, and methotrexate, today as well as my first appt., but I refused. How has the plaquenil been for you? I have the book. It doesn’t stray to far from me and I have it highlighted throughout, but it is always nice to talk with someone too. Thanks again! I’ll probably contact again if that is okay?
When I get onto this protocol I’ll gladly be another voice!
Kelee

[bonnielou]

Hi Kelee and welcome. I have been on minocycline (and plaquenil) for 5 1/2 years now. My dose started at 100mg 3X/week, and I just increased to 200mg 3X/wk last December. I take 2 grams of Vitamin C daily, but I do have some blue patches on my skin — mostly my calves and thighs. I might feel differently if they were on my face, but they really don’t bother me, and are a small price to pay for feeling so good.

It never occurred to me to change medicine — I am so grateful that I have responded well to the mino. I finally did a consultation with an AP physician last December, who increased by dosage at that time. I would definitely not start with 200mg/daily this soon. Take your time and work your way up. Good luck!

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[Cangirl]

Thanks Bonnie!
It is so nice to hear from people and learn about their experiences with the AP. It makes me feel more at ease to know what others have gone through in their journey and that it can be done!
Kelee

[Maz]

Hi Kelee,

Here are a couple studies discussing the blue-gray hyperpigmentation that some folks get with minocycline:

http://www.ncbi.nlm.nih.gov/pubmed/3158285

http://www.ncbi.nlm.nih.gov/pubmed/8217753

The tetracyclines are highly chelative, binding to minerals in the body, including iron. It may be one reason why its so neuro-protective for MSers, because MSers have a problem with high levels of iron in their brain tissues, which is known to be highly toxic and may actually be causing brain lesions and nerve scarring if it spills past the blood/brain barrier. They’re also using minocycline for stroke victims, within hours of the event, as its also said to help prevent further nerve damage.

It’s a strange thing that rheumies would prescribe some of the most toxic medications used in medicine today for rheumatic diseases that alter immune function significantly, may cause overwhelming infections or certain cancers, and yet be afraid to prescribe minocycline that may cause (in some folks, not all) benign skin hyperpigmentation. As Bonnie mentioned, it’s a cosmetic nuisance, if it does occur, but it’s in no way life-threatening and is usually reversible and may actually be preventable if folks also used daily Vit C (needed to metabolize iron). Hard to imagine why dermatologists would prescribe minocycline to teens every day for acne (my daughter is on it) and not worry about this.

In the past 6.5 years I’ve been on this forum, I’ve only read posts from a couple folks where long-term usage led to corneal or oral mucosal discoloration. Mostly, if hyperpigmentation occurs, it’s on the skin and shows up as bruise-like patches. This is likely due to the fact that when we bang ourselves and get a bruise, the blood that rushes to this area and pools there, is more highly dense in serum iron, which remains deposited there due to the minocycline. One lady reported having quite a few bruise-like discolorations on her legs and she switched to doxy for a while. Over time, these disappeared. Another lady who had patches on her face was able to have them lasered off, but she continued with her minocycline. For those with more serious conditions, like scleroderma, the preference is to have blue patches than scleroderma lesions on their skin. And, there is always the option of switching to doxycycline, if it does become a concern. In any case, hyperpigmentation doesn’t occur for all minocycline users.

As summer quickly approaches, it’s also good to be aware that all tetracyclines can cause sun sensitivity, so ensuring to use a high SPF sunblock to protect the skin from unnecessary burning and further risk of hyperpigmentation is wise. I use an SPF of 50 initially and then lower it to 30 by summer’s end. I’m a sun-lover even though I’m fair-skinned and prone to burning. Even so, I experienced the best California sun-tan of my life when I used minocycline! 🙂

This isn’t to say that there aren’t other possible side-effects with minocycline and anyone considering the therapy should become fully informed about these potentials, but most folks, on the whole, tolerate minocycline very well and if it’s safe enough to be prescribed to teens for acne on a long-term basis, then it’s safe enough for folks with more serious diseases, like RA or scleroderma. 🙂 So, no worries, Kelee…if you begin to notice hyperpigmentation and it’s bothering you, then you can always switch to doxy…but minocycline generally produces swifter responses in most people due to its superior tissue penetration.

[jgn_mom]

Hey Kelee,
You are from London? I also have a rheumatologist in London and would like to talk to you some more. My rheumatologist said that antibiotics would be “an absolute last resort” and told me about the skin pigment change. I thought this was amusing (sarcastically) since she put me on prednisone. she didn’t say you know prednisone causes weight gain, moon face, hair loss, osteoporosis. I started on AP with a doc in Toronto but I am off it due to tongue and throat swelling and mouth sores. I am going to find out tomorrow if I should start again but I feel like this Toronto doctor isn’t knowledgeable enough to monitor me through this process. I got talking with someone that has very similar symptoms and he goes to a doctor in California. I am at that crossroads now where my quality of life is severely compromised and I booked an appointment for July. Whlle some might think this is a drastic move, I truly feel I am trying to save my life so I can be there for my husband and kids.
PM if you like!
Michele

[Nico]

I have noticed a drastic change in my face color of a blueish color around my mouth and on my face. I surely hope this is not a permanent thing, I have started taking 1,000 mg. of vitamin. C I hope this changes thing, its bad enough with the Tengelatis stuff without this. I take minocyclene 100 mg. 2 a day. I just recently started on the brand from Watson, 7 months ago I never noticed it while on the Minocin Stiefel Brand, I wonder if this is why, the generic brand is different??
Nico

[Author]

Posts