The original version of this page can be found at :
Posted By : Stevie_83 - 3/15/2007 9:26 PM
Family member (or close enough to be called that) of mine has had lupus for 20 plus years. Right now, she is battling with a lesion on her leg that started out about the size of a dime and is now bigger than a golf ball. Not only is it growing, but it is getting deeper. She says she can see the bone. All her doctor in Sioux City, Iowa does is cleans out the sore and disinfects it with antibiotics. She is in incredible pain and to her recent visit to her specialist, they gave her more gauze and morphine to kill the pain. I'm worried, b/c I feel that either the doctors is only treating her as a patient and not a person OR has llimited knowledge about this type of issue. Recently, on a website I came across an alternative treatment that isn't usually suggested by doctors (or so the website says) that is called "Collastin". I'm half tempted to buy it and send it to her. Has anyone heard of this medicine? Using it? I'm reaching out to anyone with ANY advice. Any doctors/specialists you recomend I contact? She really deserves the best treatment humanly possible. I just want to help her.
Can anyone help me help her?

Posted By : CityGirl - 3/15/2007 9:32 PM
I am not familiar with the product you mentioned. Most will say to proceed with great caution when purchasing lupus "treatments" via the Internet.

My suggestion would be for her to see a good infectious disease specialist. If her lesion is getting worse chances are it will need to be debreeded surgically and perhaps a much stronger antibiotic will be administered. I would think whatever material is debreeded will need to be cultured at a lab for bacteria and infection. If the lesion is infected, and it sounds like it is, she could be in danger of getting sepsis (systemic infection). I dont want to be an alarmist but that can cause organ damage and loss of limbs. Once the sepsis starts it is very hard to control.

Hope this helps.

Posted By : PattyLatty - 3/16/2007 4:57 AM
Stevie, I agree with CityGirl. Your family member needs a second opinion by a specialist. I'd run, not walk to the best doctor I could find. This is nothing to fool around with.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, multivitamin, calcium w vit D, fish oil, aspirin

Posted By : CaptSue - 3/16/2007 5:17 AM

What kind of doctor is treating her now? I think CityGirl has a good suggestion in finding a specialist. If she's already seeing one, find another. Sorry she has to go through this.

I haven't heard about the Collastin thing. Maybe someone will come along that has. I wouldn't try it without a lot of research and hearing some first hand experiences. Too risky.

Good luck,

Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg and tapering), Imuran (2X50mg), Prilosec(2x20mg), Prozac (20mg)

Posted By : Peaceful Harpist - 3/16/2007 6:49 AM
Stevie, I haven't heard of this either. I would have your sister go see a specialist, ie dermatologist, open wound specialist. If things aren't getting better for her, take her a.s.a.p. to a specialist. This is very serious. Blessings and prayers for you both, Cecelia

Rest well, nesting is healing,  peaceful harpist 
Lupus(both SLE and Sub-Cutaneous Lupus),degenerative disc disease, multiple conective tissue disorder,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's and Rosecia, vit. D deficiency.  Medications: Plaquenil 400mg. day, Tramadol 100mgs 2-3 day, Neurontin 300mgs day, effexor 225mg day, Ativan 1mg 1-3day, Preacid 30mg day, Metroprol 25mg day, Levothyroxine 50mg day, Mobic 15mg day, Hydrocodone 500mg as needed every 4 hrs., Azelex Cream 2 x day, vitimin D supplements, iron/dextran infusions every 3 monthes and sun screen.

Posted By : suetoo - 3/16/2007 2:25 PM
Hi! Stevie,
I am nurse and I had never heard of such a product, so I googled it. I wouldn't use it, but I can't give medical advice, just lupus friend advice. I agree, she needs a different doctor, as soon as possible. She deserves pain management as a patient right, first of all. The idea of a life threatening infection is scary. There are wound care specialists that treat that kind of wound. In the old days, wounds were debrided, (the dead tissue surgically removed)because healing can't start until the dead tissue is cleaned away, and packed with gauze. Now we know that wounds heal best in a moist environment, and we use alot of dressings called hydrocolloids. Fleshy colored, soft padded adhesive dressings that cover a wound to keep it moist, but allow oxygen in to encourge healing, but keep germs out. Please don't wait, and hint, hint, the fastest way to get to a specialist is often through a teaching hospital's emergency room. yeah If you can see the bone, or if it isn't healing after a few weeks, and the pain is that severe, and your doctor isn't fixing you.... you deserve to have one that will. You know what they say about the squeaky wheel. God Bless, and keep us posted, suetoo

God knows, even if I don't....
CNS Lupus 2005, APS
Meds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.

©1996-2017 LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer