Darkening skin …help

[rebeccaavazian]

I have read some posts talking about the “mino tan” which I have noticed happeneing to me since I've been on the Minocin BUT I also had even more darkened skin before I started the Minocin like around my elbow area and my feet and ankles and knees but thats not it….in those darker areas on my elbows i have an area of loss of pigmentation…does anybody else have this that has scleroderma? My rheumy said its just because my skin is so tight its kinda like stretch marks. Does this make any sense? And secondly, what do i do exactly for the mino tan….I've read take Vitamin C that it helps please advise.

Thank you

[Kim]

Hey Rebecca,

This is a weird disease that will keep you guessing, for sure.  I had a few patches early on with loss of pigmentation (almost white) that are gone now.  The texture of the skin on those patches was different too, and in my case, it was very thin.  Now the only skin that is a sickly yellow/white is my hands and it too is very thin.  The skin on my arms was like that, but is now more normal in texture and color.  Even when I try to put bronzer on my hands to even out the color, it won't accept the color.

My diet is loaded with fruits and vegetables so I don't supplement with extra Vit C, but let us know if it works for you.

Good luck…..kim

[MaryP]

I have both hyper and hypo pigmentation.  I'm amazingly tan, and darker in my affected sclero areas….hands, forearms, parts of upper arms, face, feet, legs, etc.  I started getting more tan before I took mino (just by a few months), so I can't say tan is from mino; I think the SD has a big role in it.  Of course, mino makes you more sun sensitive, so I use an SPF50 outside.  As I've gotten better, my skin slooooowly loosens and the tan fades slowly.  I don't find the tan to be a bad thing, more as part of this disease and process.  I don't suppliment vitamin C as I believe it to aid collagen.  Others here do use it and have good results, so they might pipe up. 

When my skin was at it's thickest and tightest, I developed white patches on my hands, forearms, and upper arms.  As I'm typing, I noticed that the white patches in my hands have just about disappeared; a bit on the forearms too.  

[rebeccaavazian]

So basically what you two are telling me is the darkness and patchy loss of pigmentation will eventually disappear being on Minocin? I've been on minocin for about 4 1/2 months and should be starting my IV clindy soon. Do you think IV clindy  boosted you two getting better? Myabe I will hold off on the vitamin c supplement I've been doing ok lately and I dont want to stir things up….thank you both!

[Kim]

Yes, Rebecca, the IVs got things moving again in the right direction.  I'd been on Mino for about a year and had plateaued.  For me, the IVs and adding Zith to the oral Mino yielded good results.

kim

[MaryP]

I am neither a scientist nor a doctor, so please take my opinion only as that of patient who has tried to educate myself.

I can't draw the conclusion that minocin lightened my SD darkened skin.  I've always believed that as my SD lessened it's hold, my skin got better because *I* was getting better overall.

In my situation, I believe the clindy IVs have been and continue to be a tremendous help.  I'm not sure what you meant by once you start, you can't stop.  I've been told by my doc that I will eventually be taking minocin only.

I will also say that 4.5 months is still early.  At that point, I saw some problems I had improve (joint pain, stiffness) but many new problems cropped up too.  It's a process that will definitely teach patience, but, for me, it's working well.  Good luck! 

 

[JBJBJB]

Rebecca,

You are not the only one. I am facing the same problem. I have to wear SPF 70 or higher before I can step out of the house, it still gave me tons of ugly tan. It's not the real tan, it's dark, ash brown like. It's really ugly.

Here is our conversation earlier on about this topic.  http://www.rbfbb.org/view_topic.php?id=913&forum_id=1&highlight=skin+gets+so+dark

This is my 5th month on AP. I am anxiously waiting for improvement.

[rebeccaavazian]

Thank you Kim and Mary P!! 🙂  I am just sooooooooooooooo happy to hear how the IV's are helping you two, I just can't wait for it to help me too! I know everybody has different results and I probably shouldn't get to excited just yet but I just want it to work sooooooo bad !!!
Thanks JB for the link!

[annie from hawaii systemic sclero]

My darkend skin has gotten much better since using SPF and covering it up, but I guess it hasn't helped that I spend so much time walking on the beach.  From what I've read, hyperpigmentary changes in skin are secondary to side effects from minocin metabolism.  However, hypopigmentary changes in sclero skin, as I have from scratching myself silly on morphine, are due to actual pathology from melanin changes in the dermal portion of skin. 

Although skin changes are a visible marker of our progress or lack thereof, vasculature changes/damage, it seems, determines our mortality…..  i vote to save our capillaries!!  See article below…

http://www.skinandallergynews.com/article/S0037-6337(08)70609-0/fulltext

[JBJBJB]

When I went to Sydney, Australia, this past July, my mother suggested me use all natural aloe jell for my darkened skin. She has aloe plants in her garden, and she rubs it on her skin every morning. She does not have any age spots. In her 70s, she looks like a 45 year old lady , her skin is very smooth.

After I came back, bought a tube of Aloe jell….since I cannot find any fresh Aloe plant in Indiana except corns, corns, sweet corns every where. :roll-laugh:  If you are not from Indiana, we have tons of corns here.

I also drink Aloe juice sold by Trader Joe's. It's been only about a month, my dark face is getting a little relief.
JB

[Kim]

Thanks for the article, Annie.

I find it shocking that Dr. Varga (supposedly one of the leading SD docs) flat out states that the immunosuppressive drugs do not work!  How 'bout that 'do no harm' oath?  This is the same doctor that wouldn't consider abx, I'm assuming.  So disturbing.

kim

[JBJBJB]

Kim,

I saw Dr. V in June. He was very kind, soft spoken and very thorough. He asked me what type of medicine I was on. I told him I went to see Dr. S in Iowa and got IV and minocyclin. I told him it was exactly two months and I was feeling better.

He said if minocyclin worked well for me, just kept taking it for a while. He wanted to follow up with me in October.

I would say, he was open to it and reacted a lot better than my other rheumy, who REFUSED to hear AP and told me, I was wasting my precious time.

:JB

 

 

[Kim]

That is encouraging, JB, if Dr. V. didn't roll his eyes at the mention of abx.  He has authored so many articles that if you could leave an impression on him next month it could further our cause.  Can you imagine if a top doctor at Northwestern U. in Chicago changed his focus

---

oh the possibilities!

Please do a follow up on your appt…….kim

[JBJBJB]

Kim,

I plan on going to see him around Nov. I am also hoping to get my 6 month IV boost and do pulsing with Zith (like you did) in October. By then, I hope I will have some improvement. Currently I am still having a lot of pain and my ESR is higher than 40, which is higher than when I saw him in June (my ESR was 25 then). I would like to present a best case possible to “impress” Dr. V with my AP treatment.

Keep your prayers for me. I will update and keep you posted on my next visit to Dr. V. He is really nice and he did listen to me and explained everything to me when I was there. He reminds me of Dr. S in Iowa.

JB

[Author]

Posts