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Post by richie on Jun 18, 2009 22:07:07 GMT -5
Hi Firstly --congrats to the folks who administer this board --you do an important service ---A major obstacle to people getting EFFECTIVE HELP is knowledge and any board that provides info on effective treatment is important ----Quite frankly after looking into everything and using minocin for almost 10 years {complete remission}-I still conclude thats the only real effective treatment for diffuse scleroderma }---I have spoken to many people over the years --many did start on antibiotics and have done well some were lost cause it just was too late --the others who felt they were being sold something ---I mentioned the facts and then went on to other people who need help ---Just one more point --the resistance issue --the fact is except for some illnesses tetracyclines are not prescribed very often any longer --there are far more effective antibiotic classes for almost all infections etc ---Resistance is a non--issue -- Richie
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Post by jeffn on Jun 19, 2009 7:50:09 GMT -5
Linda - No need to apologize. I was not my intent to chastise you in any way or as I said twist arms. It is simply a matter that over the course of two and a half years that I have been on AP I have heard some statements about AP that range from misleading to outright whoppers. Some of these are based on generalities or half truths and others simply appear to come from nothing more than malice. I know yours were not from malice I find I need to address the issues I THINK I know about. Or at least put it into perspective. I have a friend that is a nurse. I have known her for years and I thought was knowledgeable in these issues - she is just a disaster - she has no idea about SD or AP. She has told me so many things that I have researched after and found to be simply not true. She is still a friend but I don't discuss SD with her in anything but the most general terms any more. Its just not worth it because she doesn't get it and I don't think ever will. It was very eye opening. It sounds like you are enjoying your lake trip It is good to get away once in a while. Even though we can't leave the SD behind at home it is still nice to get out of the daily grind. Hey if are content to let the Docs handle it at this point thats what you need to do. We all have to to what we feel is right for us. I had a very busy time dealing with my parents and health issues many years ago I does take a while to get by all that. Not an easy thing.
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Post by jeffn on Jun 19, 2009 7:54:22 GMT -5
Richie - Thanks for taking the time to check us out over here and the kind words. Please don't be a stranger. You have a vast knowledge about SD and AP and I have always appreciated and looked to your posts over on RBF.
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Post by Cubby on Jun 19, 2009 16:20:17 GMT -5
RICHIE!!!! Happy to see you here! I agree with you about the antibiotics. I know about 30 people on AP and all are doing well and some are in remission. I know many do just the AP. Some do it with cellcept or cytoxan and I do it with Photopheresis. I always wondered if the Photopheresis was even helping at all until I had 2 minor flareups last year. I increased my Photopheresis treatments and the problem went away. In it's own way, the Photopheresis also fights the bacteria which is the school of thought for those on AP.
WELCOME TO OUR BOARD!!!
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Post by Cubby on Jun 19, 2009 16:27:58 GMT -5
LINDAR: I have been on Minocin, 100 mg 2 x a day since late October, 2005. I have never had any resistance to other antibiotics. In fact, I had a knee replacement last year and was on high doses of "other" antibiotics along with the Minocin because of the risk for infection, especially MRSA. Never had a problem. I have also had to take ZITHROMAX twice in the past 3 years along with the Minocin and it worked with no problem. Last time was about 6 months ago. Yes, it is weird that such a cheap little pill could do so much! Whatever treatment you choose to do, just STOP THE PROGESSION of your disease.
I am not saying GO ON AP. I do wish you would read the book, though.
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Post by isobelle44 on Jun 19, 2009 20:42:44 GMT -5
Its great to have everyone here and i learn so much from boards like this. I just want to put in my 2 cents with the dark hands. I have been wondering what they are from, I have a morphea dx and taking minocycline and my hands have really darkened, actually more then my hands but those i notice the most. I wondered why that is happening. Also in the afternoons they start looking like dark leather. Sharon
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Post by Cubby on Jun 20, 2009 12:28:46 GMT -5
SHARON: As I mentioned, when I go to water aerobics I am covered from top of my head to tip of toes. Then, I later on waterproof sunscreen on my face and hands. Then, when I go to the beach, I try to sit under an unbrella. I still get tan, but not as bad.
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 24, 2009 10:00:20 GMT -5
Well I'm back from the cottage, hopefully not for long though.... Jeff, Cubby and Steve; I have searched for the Henry Scammell book on line and will be ordering it, as well I am going to look up the road back foundation for additional info. I really appreciate your guidance and the kowledge that you all have to offer. Now on that note ;D When discussing ap the drugs that keep popping up are tetracycline and minocin. My questions for you are: 1) is minocin in the same family as tetracycline? 2) I cannot tolerate tetracycline and wonder if you know if there are any other ap drugs that are or can be used in its place? Jeff, something tells me that we might have had this type of conversation on the old board and you had said that there was. My memory has gotten so bad and I cannot remember I look forward to hearing back from you with your responses...... Just as a note which is confusing me, Kathygirl and I currently go to the same sd clinic in dowtown Toronto. There are 2 dr;s there which we have seen both. She has been given ap from one of the doc's as where when I asked the other doc who is suppose to be more knowledgable about sd, was the one that told me there was not enough evidence to support it's use. This has nothing to do with rec'g a response from either of you, guess it just made me feel better to say it.... ... I go back to that clinic at the end of July and am going to question them on this. They say that they share all patients and it was my impression that they also followed same protocol. I had once asked about ivig treatment and was told they only use this treatment to treat digital ulcers that will not heal. I don't know what they consider by not healing as I was suffering with one for well over a yr and they still didn't give it to me..... Thanks for listening.... take care Linda
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Post by steve201 on Jun 24, 2009 10:15:33 GMT -5
Jeff, Cubby and Steve; I have searched for the Henry Scammell book on line and will be ordering it as well I am going to look up the road back foundation for additional info. When discussing ap the drugs that keep popping up are tetracycline and minocin. My question for you is: is minocin in the same family as tetracycline?? Jeff, something tells me that we might have had this type of conversation on the old board. I am allergic to tetracycline and cannot remember if there is another type of anti-biotic that can be used in place of these ap drugs. I look forward to what the 3 of you have to say about it...... Just as a note which is confusing me, Kathygirl and I currently go to the same sd clinic in dowtown Toronto. There are 2 dr;s there which we have seen both. She has been given ap from one of the doc's as where when I asked the other doc who is suppose to be more knowledgable about sd, was the one that told me there was not enough evidence to support it's use. This has nothing to do with rec'g a response from either of you, guess it just made me feel better to say it....lol... I go back to that clinic at the end of July and am going to question them on this. They say that they share all patients and it was my impression that they also followed same protocol. I had once asked about ivig treatment, they currently only use this treatment to treat digital ulcers that will not heal. Thanks for listening.... take care Linda Linda...as far as I know there are several types of antibiotic's in cycline family.....any one of which can be prescribed in low dosage form....might wanna find a medical chemistry book someplace and do some research on the types of "cyclines" there are that you might be able to tolerate.....minocycline and tetracycline are only a few of this huge family.....the doc just has to open his little pea brain and do some research to give you an antibiotic that you can tolerate....one problem that just came to thought is that it may be reacting to some other med that your on....so some research on that might be in order...or you just maybe allergic to it....who knows but I'd be asking some serious questions if this is the route you and your doc are willing to go.....it can't hurt cuz it's low dosage... Steve
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 24, 2009 10:19:58 GMT -5
WOW that was a quick response Steve. Thanks so much. Hope you're having a great day
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Post by jeffn on Jun 24, 2009 13:16:16 GMT -5
Linda - Keep in mind that the following responses are "as I understand it". Linda or anyone please feel free to correct me.
Minocin is a brand name of minocycline. Previously minocin was prescribed almost exclusively but then the company changed hands and the med became popular as a treatment for acne and the price went up. Minocin is "pelletized" which is supposed to be better for your stomach. My Doc. previously had been a minocin only guy but by the time I came along he had gone generic. I think minocin is a much better buy in Canada so If you do try AP mincycline you might do well to go brand name. I have been on generic Watson brand mostly and have had a good response.
I think the three biggies in the cycline family were tetracycline, doxycycline, and minocycline. I would guess there were others. Minocycline I think was the last evolution of the cyclines (again I think).
There are many variations of AP and a host of antibiotics are used, I would guess there is something there that you could tolerate. That would be up to your Doc. Maybe you can find an AP Doc near you, RBF could help you with that.
In regard to the one doc saying sure and the other not using AP - Yeah that is pretty common I believe. When I called the woman from RBF to find an AP doc she hooked me up but also told me an interesting story. She was/is seeing the same Doc I see, anyway she would go up and see him and was on mino but she kept ending up in the waiting room with another woman visit after visit. The other woman was seeing another Rheumy. They would exchange pleasantries and both had SD but one time the woman came over and said she wanted to ask a question. She said "I keep seeing you here and you are getting better - How". They got to talking and found that the other woman was not on AP and had never heard of it. It turns out that of all the Rheumies down that hall only one was using AP at the time. The other lady switched Docs and is doing well. It is what it is I guess some do and some don't. As I have said many times when I first found out about AP and ran it by my GP he said sure get me some more info and I'll work with you. I guess I was lucky in that before I began AP no one gave me a hard time about it. I think my GP just thought mino was so low impact what the heck - stop it if it doesn't work.
Funny about the IVig because although like AP it is an off label use for SD people do get it for SD. In regard to getting rid of digital ulcers it appears to me that for most of us on mino that have digital ulcers the ulcers are the one of the very first things to improve. Mine were healing inside of three weeks. Took a while to totally get rid of them but they stopped getting worse almost immediately. Even if someone does not by into AP I can't see where the mino is not at least worth a try just for the digital ulcers. But thats just my theory. Mine are gone and I sure don't miss them.
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 24, 2009 20:04:17 GMT -5
Thanks Jeff. All sounds good to me, you won't be getting any corrections from me because I don't know the difference Seriously, thanks for all the great information. In the past I've seen an infectious disease dr who put me me on levaquin for the digital ulcers. It was the only thing that really helped them so I keep a stock of them on hand now for whenever they start to act up, clears them away so fast. Linda
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Post by grammie on Jul 15, 2009 16:49:22 GMT -5
Well, we finally have the sun and I have the best tan I've ever had ;D I have continued to put on sunscrean and still am brown! When I wear silver jewlery, WOW does it show up. It is fun to hear folks tell me I that I have a wonderful tan and yet, there hasn't been much sun! All I do is smile ;D I do keep trying to keep the sunblock on and the hat. I do think the darkness has begun to stablize......I know that the skin is more flexable! (Been AP since March). Anyway, since I learned that I don't have to be concerned about the tan, just take steps to try to keep it under control, I've relaxed more and enjoyed the summer!!! Hope you all have too!---Steve, get in the boat much? grammie
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Post by ltulip on Feb 15, 2010 20:17:29 GMT -5
Hi all! I thought this was an interesting thread since I am Afican American and SD presents differently for me. Rather than gaining pigment, I have lost quite a bit of pigment. Makes me look like I have vertiligo. I guess this disease puts different whammies on everybody - sometimes with a different spin . Anybody else present this way? Linda
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