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In the “Womans Day” Magazine April 1, 2008 there is a wonderful article about a woman with Scleroderma who was misdiagnosed several times and finally they found she had Sclerodema told her she had three to five years to live. Then a friend of a friend told her about Minocycline and she is well back to normal running and completed her first 5K.
So good to see this kind of article in a popular magazine, it can't help but get the word out. Rose
I am just signed in as a new member. I am looking for more information on treatments for scleroderma. I was diagnosed a year and a half ago and have not had succes with treatments so far. I have taken methotrexate, cellcept, IVIG treatments and am now trying to decide if i should begin cytoxin IV treatments. I am concerned about breaking my immune system down and what a alternatives there may be. I don't know anything yet about the antibiotic treatments or if they would be helpful for scleroderma.
Hi Diane;
Welcome to our gang.You are sure to learn a lot here and how AP DOES work for SD.Ritchie and I are the “oldies” and we are in remission.We are not using the same protocol but we both got to the same ending.He used minocin 200mg a day.For me it did not work at all.I had to tinker with the dosage,the kinds of antibiotics used and above all,diet.We are all different and what works for one ,may not for the other.You have to try things until you trip over the one that works for you.The end of the story is that IT DOES WORK. LynneWelcome Diane,
I think it's great that you're considering AP. 18 months is not terribly long so I hope your scleroderma symptoms aren't too bad. I had scleroderma symptoms for almost a year before I started AP.
I got a lot of info and “researched” it as an option for 3-4 months before jumping in. At first you think it's too good to be true …. if this really works, my doc would tell me about it …. but I've learned that docs don't always have the answers and it is really important to do what's right for you and be your own advocate.
It's been 17 months since I've been on AP and my docs are saying to keep going. They see the progress and they don't want to tinker with anything. I've seen symptoms reversal with skin softening in my chest, neck, face, thighs, and looser joints, and no internal organ involvement. My fingers are ever so slowly getting better (sclerodactyly is my most visible symptom).
So please read Scammel's book and seriously consider AP. It saved my life and my two young children will one day be very grateful. Right now, they know mommy has some boo-boos.
Hi Diane,
Welcome to the board and especially the sclero. gang. Definitely read Henry Scammell's books, it's jaw dropping info. that will save many a lives of people with sclero. Yes, at first I think everybody tried the standard treatments for SD while they went through that awful first year of shock, sadness, anger, disbelief, tears, 'why me? and back through all of that all over again. Then one day you decide you're not going to just roll over and give in, you're going to fight. Fight for your life no matter how many doc's tell you 'you know there's no cure don't you?'. Thus begins the huge undertaking of massive research that seems endless and info. so vast it's overwhelming. So read, digest then read some more and so on, taking breaks along the way so as not to become overwhelmed. Bottom line, you won't be able to deny yourself the chance to try AP, as unbelievable as it sounds at first, something inside will tell you this could be it. It's a long road, it's no quick fix but it's your life we're talking about – and you're worth it all. So wait not a minute longer…
Take Care!
Steph
Welcome, Diane. I started antibiotics quickly after being diagnosed and was never on the hard-core drugs, other than Plaquenil. Improvements don't ever happen as fast as we'd like, but with patience this program works….you'll see. My many areas of thickened skin have improved by probably 85% in less than 2 years.
Good luck…..Kim
Hi everyone,
I'm new to RBFBB SD group and I just wanted to introduce myself.
I started having swollen hands and other symptoms Apr 07 and was finally dx'd Dec 08 with SD. It was upgraded to diffuse this Feb. I have been on 100 mg minocycline twice daily since 4 Feb 08 and saw Riverside Calif AP specialist doctor this week. I will change to Minocine shortly and should begin a pulsed Clindamycin IV AP next week.
I am ready to beat the hell out of my SD. Go AP!
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hey Randy;
What a great attitude! Hold tight to that optimism. The power of our minds can make or break you when the rubber meets the pavement, like life altering situations like these. Stay strong!
Steph
Welcome Randy! My hubby's symptoms started with Raynauds first, then swollen hands. He was dx'd July/Aug 06, been on AP since end Nov 06, about 15 or so months. He was 38 when dx'd – judging by your picture, you are probably a few years younger and with younger children. In my hubby's case, the Clindy IVs definitely jumpstarted his improvements. For the first 6 months on AP, he was doing mino 200 mg/daily, at the 6 month mark started the IVs and pulsed MWF mino – been on that combo since – IVs 2 per month, with the exception of skipping a few months. It has been a slow but STEADY improvement of everything, so keep the faith and good luck to you !
Welcome Diane! Do as the others recommended and read Henry Scammell's book “Scleroderma, A Proven Therapy that can Save your Life.” After my hubby's dx in Aug 06, we were in complete despair. After scouring the internet night after night (instead of sleeping, because I couldn't) I decided to search Amazon.com for anything I could read about scleroderma. When I saw this book, I immediately ordered it, read it in one sitting, and put my mind to it that my husband (young, always healthy, young children) was going to beat this and not be a statistic that the rheumy's talk about. He has been on AP for 15+ months, and doing great. We felt that AP was our only option and I believe it is. Definitely read the book – it will give you information, determination, and most of all hope. It is a great first step in learning about AP. Good Luck!!
Goodwife, funny thats the same way I found the book but I did not order it right away. I guess at the time it did not hit me right, those were pretty dark days mentally. Anyway about six weeks later I ran across it again and ordered it then. Glad I did.
Hi
I had a mean case of diffuse scleroderma with many symptoms and with new symptoms developing even after starting the minocin –however once the progression of the disease was halted -slow but very steady progress was seen –Today -over 8 years later –I have no remaing symptoms —this is from having complete finger contractures –difficulty swallowing –reflux and much more –Today every thing is normal –it takes a long time and stick to it ness but as far as I can determine –this was the most effective treatment 8 years ago and its still the most effective treatment –do your research –check things out –if you have questions –ask away here –lots of folks to help
richieWelcome to you both
Boy does this thread hit home.
My wife Sandi (58) was diagnosed with sclero last Sept…no organ involvement but tight hands arms and some crest symptoms.
First tried mtx…nothing
Asked Rheumy about Antibiotics after an amazon search when the Scammell book popped up and he said ok if we wanted to try….minocycline 50mg 2x a day for c. 2 mos. Recently have switched to minocin 100 mg 2x a day. She is also taking Mobic which has greatly helped joint stiffness. And for the last 7 wks has also been taking cuprimine but he recently cut that dose in half because she is having trouble tasting. She takes PB8 Probiotic maybe 3 3times a day and about the same Acidopholus. Stomach has been pretty good so far.
We are hoping the brand name Minocin will work better than the generic as many have reported.
At the rheumy Thurs he thought as we do that she may be showing a little improvement in her arms and hands. And
The posting on this board are so wonderful and informative. We have learned so so much
Thanks to you all
Wy
Hi, I am new to your group. I found this website last night online looking and searching for answers, doctors or ANYTHING…that will help my mom fight this horrific disease. My name is Nicole and my moms name is Victoria. She has been coping with many different “unexplainable” illnessess and symptoms for the past 4 or 5 years. Doctors saying “it is all in your head” Friends and family (except myself) , not believing or understanding this illness or what exactly is going on with her. Many, many countless nights on the computer searching for answers…first they thought is was lupus because of her high ANA count, then they ruled that out and diagnosed her with a connective tissue diesase. WHAT??? Neither one of us had any idea what that was so we both started looking up different connective tissue diseases and what symptoms she had. After many long hours and over a years of testing and different doctors and her symptoms progressively getting worse, her sensitivity to cold, not being able to open jars and lids, acid reflux, being so weak and tired all the time, sleepless nights…etc. Goiing to so called specialists (rheamatologists) who actually said it was all in her head and the ABSOLUTE FRUSTRATION of not knowing what is going !!! The doctors we go to don't know what is going on and keep referring her from doctor to doctor for different tests and we are LOSING TIME!!! The quicker we get to the bottom of this the better the results is what I read but how do we get to the bottom of all of this when we can't get to a qualified physician who knows how to “diagnose” sclerodema. Also, my mom doesnt have the outside appearance with her skin…she has what I believe to be called sine(seen-ay) scleroderma ne (SEEN-ay) sclerosis is a term used by many physicians to describe systemic scleroderma without the characteristic skin involvement. In fact, the word ?sine? is Latin for ?without.? Patients with sine sclerosis may have symptoms of either limited or diffuse scleroderma, causing damage to the internal organs. Because there are no external manifestations of the disease, it can be difficult to diagnose. As with other forms of systemic sclerosis, however, the presence of Raynaud?s phenomenon and positive autoantibodies can be useful indicators. Complications of the internal organ systems can be serious and often life threatening. This to me is even worse because it is much harder for a doctor to diagnose because it is not seen on the outside but all internal which is much much more dangerous and life threatening. So you all can understand mine and my moms frustration of not knowing and ALL the precious time that has passed without being officially diagnosed with scleroderma because of the (incompetent doctors or doctors that are unknowledgeable to the disease or diagnosis of the disease) So for years we have been spinning our wheels and going in circles and not getting ANY treatment for scleroderma, just getting treatments for some of the symptoms. So what has that got us? Like I said, ALOT of time that we don't have as the disease progressively gets worse. My mom also changed her diet and went on the macrobiotic diet. She actually thought she was doing much better but for no reason at all EVERYTHING flared up over the weekend. This time it was much much worse, life threatening in my eyes…she was eating dinner and started coughing and started to choke, she continued to cough then she couldnt breathe because her throat closed up on her, I can't EVEN imagine how scary that was for her…. so just how far does it have to go before we can get to the proper doctor who can treat her and stop this horrific disease because it is ONLY GETTING WORSE…and we dont have ANY more time!!! She has read the book you keep referring to because I saw an infomercial and ordered it for her. So last night I googled antibiotic therapy and it led me to this wonderful website that I stayed up most of the night reading all the different testimonials and realized…YES…THERE IS HOPE!!!! So I contacted the only scleroderma specialist in Houston TX Dr. Maureen Mays this morning to make an appt for her, she treats ONLY scleroderma patients and does alot of research so I KNOW she would be the BEST doctor for my mom. Then I find out that she is booked up till the END of the year!!! I couldnt believe that…so now I am not sure what we should do.
LOST and CONFUSED…please help me and my mom before it is too late…. Thank you Nicole
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