Update and Minocin Question

[Conniel7777]

hello everyone, I have not been to this board in several years. The reason for that is, I am doing very very well with my limited scleroderma! I first came here back in 2008, very scared and bewildered because I had been diagnosed with limited scleroderma by a traditional Rheumatologist. Of course, she gave me a gloomy prediction about this condition. She basically offered me no hope. So, I began to research and research the internet, & I found this site and a wonderful Doctor Who was very very well versed and antibiotic protocol. I started on minocin not too long after that, and I have been on it ever since, & I am doing fantastic! What brings me here today is a question about the Mino and related bruising. I have this on my calves and especially on my thighs. I don’t have it anywhere on my upper body or anything, but on the calves and thighs its very noticeable. The bruises are caused by me bumping myself, or even if I very lightly poke myself with my finger, I will get a bruise that does not go away. I have several that are three inches across that have been there for more than a year. They are that slate blue color. I have not been back to my fantastic rheumatologist in awhile, because I moved out of state, & I am unable to continue to see him. I do have another rheumatologist who is versed with Ap protocol, however it will be a few months until I see him again. I know that I am NOT the only one who suffers from this mino related bruising. After researching the internet, it seems to be that the only way to solve this problem is to stop taking the mino..Of course, this is not an option for me! It also seems to be that megadosing on vitamin C is not a good idea when you suffer from scleroderma. So, I was wondering if anybody here also suffered from this mInocin related discoloration / bruising and if so, what have you done to fix it? I have it pretty bad.. when I wear shorts, it looks like I am a victim of domestic abuse! Any info would be greatly appreciated!

[Lynne G.SD]

Hi Connie;
Great to hear from you.I have big blue/grey spots on my calves,my finger nail beds are blue and I have some darkening around the mouth and one eyebrow.Since things are stable I am going to use doxy instead of mino to see if it changes anything.I hear it takes forever to see the changes though

[SS]

Hi:

I also had bruises suddenly in the thighs and legs and showed to my doctor and he said that I bumped myself.
The bruises were blue,yellow, brown quite colorful.
Next day at midnight I got call from my doctor asking me to admit myself in the hospital as the lab had called him and reported I
had a very low platelet count.
Of course I did what he told me to do and had platelet infusion. For a year I had treatment for it.
I am just saying my experience with bruises may be it is a different issue for you.
So consult your doctor always and get the labs checked.
Thanks
SS

[needhelp]

I bruise easily, too; mino has really helped me. Pls PM me and advise moderator of names/locations/phs of any AP rheumies in NJ to add to the AP doctors list. I haven’t found any AP literate rheumy in NJ; and my MD is not AP literate or familiar w/AP; but agreed to prescribe mino. It would be a big help to many of us find an AP literate rheumy in NJ. TY.

[PhilC]

Hi Connie,

Are you taking any vitamin C?

Phil

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

[Maz]

Hi Connie,

Long time – no see! So happy to hear you’re doing so well!

According to some research out there, the blue-gray hyperpigmentation that looks like bruising or collects in other tissues (eye sclera, thyroid, bones, cartilage, etc) is likely due to iron and calcium deposition. When folks take Vit C, this helps to metabolize the iron out of the body more effectively – however, as you already are aware, Vit C is controversial for SD patients (promotes collagen).

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

Have you talked with an alternative doctor about the potential for chelation? Although said to be unproven, there is anecdotal evidence that it works for folks with various rheumatic diseases, including SD (see below) to reduce hyper-viscosity and to promote a healthier cardiovascular system. The proven side-benefit is that chelation binds to/removes iron (along with calcium and other heavy metals that tend to encourage biofilm formation).

http://www.webmd.com/balance/tc/chelation-therapy-topic-overview

“Many people report less pain from chronic inflammatory diseases such as arthritis, lupus, and scleroderma after chelation therapy. The theory is that EDTA acts as an antioxidant, which protects the body from inflammation and protects blood vessels. Again, this idea has not been proved by scientific research.”

This is just a thought and there are a few others here with SD who have gone through chelation. You could try running a search to find previous posts on the subject.

Hope this helps! When you’re ready, would love to add your remission testimonial to the “RBF Hall of Fame!” 😀

[Conniel7777]

@PhilC wrote:

Hi Connie,

Are you taking any vitamin C?

Phil

Hi Phil.. No.. zero Vitamin C. it scares me.. I dont want any new collagen to form…

[Conniel7777]

@SS wrote:

Hi:

I also had bruises suddenly in the thighs and legs and showed to my doctor and he said that I bumped myself.
The bruises were blue,yellow, brown quite colorful.
Next day at midnight I got call from my doctor asking me to admit myself in the hospital as the lab had called him and reported I
had a very low platelet count.
Of course I did what he told me to do and had platelet infusion. For a year I had treatment for it.
I am just saying my experience with bruises may be it is a different issue for you.
So consult your doctor always and get the labs checked.
Thanks
SS

Hi.. I am getting ready to have surgery in about 6 weeks (not related to my autoimmune issues at all ) and there is going to be pre-surgery bloodwork.. I will make SURE I ask them to check for that.. thank you for the tip..!

[Conniel7777]

@needhelp wrote:

I bruise easily, too; mino has really helped me. Pls PM me and advise moderator of names/locations/phs of any AP rheumies in NJ to add to the AP doctors list. I haven’t found any AP literate rheumy in NJ; and my MD is not AP literate or familiar w/AP; but agreed to prescribe mino. It would be a big help to many of us find an AP literate rheumy in NJ. TY.

PM Sent…..

[Conniel7777]

@Lynne G./SD wrote:

Hi Connie;
Great to hear from you.I have big blue/grey spots on my calves,my finger nail beds are blue and I have some darkening around the mouth and one eyebrow.Since things are stable I am going to use doxy instead of mino to see if it changes anything.I hear it takes forever to see the changes though

Hi,

Thanks for your reply. Maybe I am lucky that I “only” have it on my legs.. the rest of me just gets a beautiful “Malibu barbie” tan in the summer.. but… I definitely DO NOT want to live with this discoloration / bruising the rest of my life. I am going to mention this to my new AP doc the next time I see him, and ask him about the Doxy and see what he says. I mean, the Mino is working VERY well to “Keep the SD Lion Asleep” and I do NOT want to risk waking the lion up!! but.. if Doxy can do the same thing without this awful bruising side effect, I would like to find out….

[Conniel7777]

@Maz wrote:

Hi Connie,

Long time – no see! So happy to hear you’re doing so well!

According to some research out there, the blue-gray hyperpigmentation that looks like bruising or collects in other tissues (eye sclera, thyroid, bones, cartilage, etc) is likely due to iron and calcium deposition. When folks take Vit C, this helps to metabolize the iron out of the body more effectively – however, as you already are aware, Vit C is controversial for SD patients (promotes collagen).

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

Have you talked with an alternative doctor about the potential for chelation? Although said to be unproven, there is anecdotal evidence that it works for folks with various rheumatic diseases, including SD (see below) to reduce hyper-viscosity and to promote a healthier cardiovascular system. The proven side-benefit is that chelation binds to/removes iron (along with calcium and other heavy metals that tend to encourage biofilm formation).

http://www.webmd.com/balance/tc/chelation-therapy-topic-overview

“Many people report less pain from chronic inflammatory diseases such as arthritis, lupus, and scleroderma after chelation therapy. The theory is that EDTA acts as an antioxidant, which protects the body from inflammation and protects blood vessels. Again, this idea has not been proved by scientific research.”

This is just a thought and there are a few others here with SD who have gone through chelation. You could try running a search to find previous posts on the subject.

Hope this helps! When you’re ready, would love to add your remission testimonial to the “RBF Hall of Fame!” 😀

Hello Maz!! you are so helpful, as usual..!! 😀

I know for a fact that my new AP doc DOES do Chelation in his office, but this will not be an option for me. His office is 2.5 hours away.. even if I were willing to make that drive, I cant.. I have a full time job. Also, the cost would be impossible for me to take on, especially when you add in the price of gas for the car.. 😥

I am going to have to have an in depth discussion with him about this “bruising / discoloration” issue and get his feedback. I also hear that laser treatments can work to remove this discoloration, but again.. that is a VERY expensive remedy…

Once I find out how I can treat this side effect, I would love to be a success story.. I mean, I am living well.. and just taking it one day at a time, so.. thats all anyone can ask, I guess 😀

[Maz]

@Conniel7777 wrote:

I know for a fact that my new AP doc DOES do Chelation in his office, but this will not be an option for me. His office is 2.5 hours away.. even if I were willing to make that drive, I cant.. I have a full time job. Also, the cost would be impossible for me to take on, especially when you add in the price of gas for the car.. 😥

I am going to have to have an in depth discussion with him about this “bruising / discoloration” issue and get his feedback. I also hear that laser treatments can work to remove this discoloration, but again.. that is a VERY expensive remedy…

Once I find out how I can treat this side effect, I would love to be a success story.. I mean, I am living well.. and just taking it one day at a time, so.. thats all anyone can ask, I guess 😀

Connie, you could ask your doc about oral chelation options so you don’t have the cost of IVs. I was unable to tolerate IV EDTA and so my doc switched me to oral DMSA. My insurance covered this option, so my cost was just the co-pay. You might need to get tested (saliva testing) for heavy metals in order to get this approved, but not sure about that. I tested CDC high in lead in mercury, so it was a no-brainer.

There are also some other herbal alternatives for chelation, like good quality chorella and fulvic acid….but, again, would be good to check with your doc on best options for you and your particular health status. He may ever suggest a combo, like my doc did (oral DMSA removes heavy metals via gut and chorella grabs it and eliminates it more quickly).

So great you’re doing so well! 🙂

[Conniel7777]

Maz,

WOW.. I didnt even KNOW there was an oral option! hmmmm… interesting.. I am definitely going to ask him about that!

Thank You!!

[PhilC]

Hi Connie,
@Conniel7777 wrote:

Hi Phil.. No.. zero Vitamin C. it scares me.. I dont want any new collagen to form…

Well that might explain why you bruise easily — you could be deficient.

By the way, there is no scientific evidence that supplementing with vitamin C is harmful to people with scleroderma (I’ve looked). As far as I can tell, any statements that vitamin C supplementation might be harmful to scleroderma patients are purely speculative. Even so, recommendations that people with scleroderma should avoid taking high doses of vitamin C do seem reasonable.

“Patients should be cautioned about consuming large doses of vitamin C (>1,000 mg/day) due to its potential to stimulate collagen formation and enhance its deposition.”

Source: Scleroderma: Managing Systemic Sclerosis and Its Complications

Phil

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

[richie]

Hi I take a packet of Emergen—Cee which is 1000 mg of vit C daily –no problems and I find I get much much less colds —
richie

[Author]

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