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I HAVE SEEN A NEW DOC AT NORTHWESTERN IN CHICAGO AND I WILL BE HAVING STEM CELL OR CYTOXAN FOR TREATMENT OF MY SYSTEMIC SCLERODERMA HAS ANYONE HAD EITHER OF THESE? IF SO CAN YOU TELL ME WHAT YOUR OUTCOME WAS? I'M VERY NERVOUS ABOUT BOTH, I JUST WANT SOMETHING TO WORK. MY DISEASE HAS PROGRESSED VERY QUICKLY IN 1 YR.
Exercise Surgery Diffuse scleroderma Dialysis Anxiety Menopause Scleroderma Autoimmune diseases CellCept Stem cell transplant Sweating Diabetes Physical therapy Anemia Constipation Hypertension Cytoxan Weakness Pain
I was treated with 6 months of Cytoxan treatments, once a month almost 5 years ago. I also have systemic scleroderma and I was treated with the Cytoxan about 3 years after being diagnosed. My condition was progressing during that time, but I wouldn't say that it progressed quickly in any one year, it was more of a steady progression. This treatment worked for me, but I have heard of it not working for everyone. Since treatment, I have been stable without any active disease and I've gotten most of my life back. I have a little bit of scar tissue or my kidneys and lungs, but nothing new. I hope that whatever decision you and your doctor make, works the best for you.
Hi Nikki,
I was on cytoxan for a few months, IV injections once a month, and it did nothing for me. My doctors told me if it was going to help me then it should have at least slowed down the progression in that time but it didn't. So I'm moving on to cellcept to see if that helps.
From the research I've done, and from discussing it with others here, cytoxan doesn't work for everyone. When it does work it works great. Unfortunately we just have to keep trying different drugs until we find what works for us. I hope you find something that works for you. Good luck.
Birder
I had a 6 month treatment of cytoxan in 2006 and it stopped the progression of my lungs and also my skin on my hands and arms did not progress any further than where it was at that time.
I then had several months on cellcept which made me very tired and I was also anemic. I don't know if the cellcept caused the anemia or the chemo treatments did.
I was 46 at the time and I went into menopause early which is one of the side effects. For me, the menopause was not a bad thing since I have already had my children, but if you are younger and want children, it is definately something to talk with both your rheumy and your gyn doctors.
I have gotten stronger and feel better most of the time since then, so I would go through it again. I can walk 5ks now but I still have manage the expended energy and plan for rest days.
(After each treatment it is important continue to drink lots of fluids. I also had a milk shake on my way home which helped with restoring my energy enough to get through dinner and then make it to work the next day.)
THANX FOR THE INFO. I HAVE BEEN ON 3 ORAL MEDS SINCE 9/08 BUT MY SYMPTOMS ARE PROGRESSING QUICKLY THAT I'VE COME TO THIS POINT. IT IS A STUDY AND I WILL BE RANDOMLY PICKED FOR EITHER ONE. I AM 40 AND MY YOUNGEST KID IS 15 AND I HAD MY TUBES TIED AFTER HIM SO I'M NOT WORRIED ABOUT STERILITY. 3 MOS. AGO MY LUNGS WERE 1/4 AFFECTED NOW THEY ARE 1/3 AFFECTED AND MY ARMS AND HANDS ARE PRETTY BAD ALSO I CAN STILL WALK BUT LEGS ARE GETTING TIGHTER. I JUST DON'T WANT TO THE POINT OF NO RETURN! SO IF I GET PICKED FOR THE CYTOXAN AND IT DOES'NT WORK I THEN GO TO STEM CELL. I'M READY FOR THE BIG GUNS NOW!! I AM IN ALOT OF PAIN AND MEDS ONLY HELP SO MUCH SO IT'S GO BIG OR GO HOME NOW! SO I WOULD JUST LIKE AS MUCH FEEDBACK AS POSSIBLE BEFORE I DO ALL THIS. THANX AGAIN NIKKI
The procedure: I had a stem cell transplant 08/08 ( a year ago). The procedure is unpleasant, but not particularly painful. The nursing staff is probably first rate (check their reputation), and they won't let you suffer. If you are nauseous or in pain , they have good medicines they are quick to give you. Be bold, don't be afraid to ask for help! Line up friends and family to sit at bedside to give you emotional support. My sister stayed with me during 2 of the 3 weeks I was in the hospital, and it made a huge difference in my happiness levels. The head nurse had to come into my room to get the nurses and CNAs because we were all telling jokes and laughing for a long time. I had the procedure at Duke in NC, and I was terribly homesick for my husband and son in FL. My advice is to make a huge list of questions about what to expect and what you will need to get through this. Ask if they are going to shield your lungs and kidney during irradiation. For the hospital stay I took sweatsuits to wear rather than a hospital gown, and my sister took them to the hotel to wash them . I would have never thought about this...take clothes to the hospital? Yes, and slippers, books, a few pictures, whatever can boost you psychologically.
The recovery: After the procedure, my son came up to NC to be my caregiver for the two months I was in isolation. You will definitely need a caregiver to organize your meds, cook your special diet, help you around if you are weak. I lost weight and was only 85 pounds, weak and bald as a baby. I noticed an immediate softening of my skin. My lungs began to strengthen. The lungs are a big deal; I had the procedure to save my lungs. The irrad & chemo really messed with my kidneys and electrolite levels, so I was on constant gatorade, and had to use the bathroom every 45 minutes. Eventually, about three months out, my constipation and esophagus cramps diminished. My finger ulcers went away. You will get better slowly, but it is a slow, steady climb! I am not normal, but I can live with the remaining problems. I still have hip and leg pain. My hands continue to curl, and my knuckles have calcium deposits. They were so painful until I got my pain meds at the right levels. I am having a lot of trouble regaining the strength I lost before I had the procedure. I am glad I had this procedure done; although I still have problems I am on an upward path to health! If you want any more details of what you might encounter, please send me a message. Good luck!!!
THANX FOR THE INFO, IF I NEED ANYMORE I WILL LET YOU KNOW,YOU HAVE HELPED ALOT!! THANX AGAIN!!
i had seven months of cytoxan treatments over two years ago and then was put on a oral dose of cellcept, which i am still taking. My lung function improved , my skin improved my pain improved and my energy improved. ALll in all i am doing great and no more progression so far.
Nikki, Look at another option: roadback.org. I have a email pal who has done stem cell, and gave me some information about it and SCOT. I can get you in touch with her, if you like.
Oh, I am a SCOT study patient, and was randomised into that arm of the study. I had researched both arms, and both were aggressive, progressive treatments. You have to undergo extensive tests to be accepted. The primary criteria are (besides having generalized scleroderma with a certain skin score) that you not be too sick to undergo the therapy, and that you have lung involvement. If you are serious about participating, call CJ Paarz-Largay @ 919-668-3754. You must have insurance that will cover your treatment. I figured I was going to have a radical treament to save my life, so I might as well benefit society and I entered the SCOT study. Good luck!!!!!
Hi Deanna,
I was diagnosed at UCLA by Dr Furst with systemic scleroderma after undergoing all of the internal organ testing which showed some lung scarring on Monday Aug 10, 2009. He suggested I sign up for the SCOT study. I have been very healthy, workout 3 or more times a week and do yoga. the only thing I have noticed is skin tightening on my arms and occaisonal reynauds in fingers and toes.
Originally noticed hand swelling in march which is what sent me to my Dr to begin with.
I reviewed all the SCOT info and it frightens me. I am trying to find people like you who have been through the program. Please let me know if you would be willing to talk with me.
What made you decide to go into the study?
The description looks so dangerous to me and scary!
Thanks,
Amy
How are you feeling in general and is your SC under control now?
It is frightening to read the monograph they give you, but it isn't very scary actually living it. It was the most scary to me to see how quickly my body was morphing into something entirely different from me, and how fast my lungs were crapping out. I went into the study because I had a pretty high percentage chance of dying from lung failure, and I wanted a treatment that was just as aggressive as the advancement of the disease. My scleroderma was snowballing, and in the three months from date of diagnosis I'd had a significant decline in lung function. Why a study? Even though the choice of treatment is random, either treatment is viable. The high dose Cytoxan arm is the gold standard of treatment for scleroderma, and the stem cell side was viewed as a possible true cure. The stem cell side is viewed as a flagship with potential to help many, many more diseases than scleroderma. I strongly wanted to help society if I was going to die anyway, after seeing what a rotten painfull disease this is. I got very, very good care, and was treated like a golden child.
Before treatment, I lost 25 pounds over 8 months from the disease itself. I had hypertension, Reynuads, esophagus cramping (I was afraid I would choke to death in the last mo before I checked into the hosp.), constipation, sensistivity to cold, constant sweating, tendon ligament cramps, arm & leg deformities, 2 finger ulcers, pronoumced weakness and clumsiness. My hard skin was up my arms and across my chest, and up my legs, I had fish mouth and no upper lip. My long hair shed contantly. I had other stuff going on that I can't remember. My lungs went from a sort of stuffy feeling to a deep wheeze, and activity required numerous rest stops. My pain levels were phenominal. I spent 24/7 in a stoned state from the large levels of Hydrocodone. After the transplant: Almost everything subsided, and either went away or moved into livable levels. Within weeks after the stem cell transplant, my hard skin was noticable softer and could be pinched up and stretched. My lungs began to heal right away. They feel normal now, and tests show a huge improvement. Remaining is weakness that I can't seem to regain. I am so skittish about pain that I don't want to jum into a rigorous exercise plan. My hands continue to curl and have calcium deposits under the knuckles that are VERY sensitive to the touch. They are a C shape now, and I am about to go into physical therapy to try to regain use. I suspect I will end up with fusion surgery, we will see. In the afternoons, they burn like they have been blistered. My hips and knees still have a lot, lot, lot of pain, and it is murder to make that monthly visit to Duke University via airline. I have to rest every morning and afternoon, but am working on improving my activity levels. I still have sensitivity to cold, especially my hands. Overall, I am pleased with the stem cell transplant. The outcome really was an unknown. A few patients have died (2 were very sick from sd and they just couldn't cope with the chemo). A young lady who had the transplant 2 weeks before me is relatively normal now. So....who knows? Now they know this is a treatment option for SD and many other autoimmune diseases. Let me know if you need more info, especially about the temporary cardio catheter they install, the stem cell extraction process, etc.
FROM ALL THE INFO I HAVE GOTTEN IT SOUNDS LIKE STEM CELL TRANSPLANT COULD WORK WELL. THE RANDOMIZATION AT NORTHWESTERN IN CHICAGO IS NOT A SCOT TRIAL BUT SIMILAR. MY SKIN, LUNGS, REFLUX, HAVE ALSO GOTTEN WORSE QUICKLY AND NOW I HAVE BACTERIA IN MY GUT FROM SLOW MOVING DIGESTION. I AM WAITING TO HERE IF MY INS. IS GONNA COVER THE TREATMENT. I AM READY TO DO THIS.
HI DEANNA, I HOPE YOU CONTINUE TO IMPROVE. I CAN'T WAIT UNTIL I HAVE ONE OF THE TREATMENTS, PREFERRABLY THE TRANSPLANT. IF YOU CAN GIVE ME MORE DETAILS, LIKE THE CARDIO CATH AND THE CENTRAL LINES ETC.., THAT WOULD BE GREAT. THANX!!!
Deanna...I'd love to talk with you, too. I've left a message to be added to your friend list so I can communicate with you directly. I'm interviewing at Duke next week for the SCOT trials.
The Central Line for the Hickman catheter is an outpaitient procedure. Ask for a shorter 2 or 3 headed line. Trust me; my line hung down below my waist and I was constantly wrapping it and taping it up to midchest. It looked like I had a third breast under my shirt. You will be prepped on a table under an array of tv monitors; these are used to help the surgeon guide the line into the vein. You are out for the procedure and can be given a pill to reduce the anxiety during prep. The pain in your chest after the procedure feels as if someone has punched you in the pectorals. Ask for pain meds, becuase having this is quite an adjustment and every time you use your arm you feel pain. This soreness and stiffness goes away within a few days. It is an adjustment to care for the line. You will have to wrap and cover it during showers. I had mine for 5 months and was trained in complete care including changing the tegretal (?) pad and flushing the lines with heparin. Take its care seriously, you don't want any sort of infection, on the surface around the incision or in the line. It really makes your life a lot easier despite the nuisance of caring for it. They won't have to find a vein or use needles on your arms for that whole time you use it! It is really helpful during the dialysis to filter your stem cells out. Have the nurse trim extra string. Besides being a bacterial highway, the extra line may grow into your skin, as mine did, and it complicates removal. They remove the line by making a few snips, then pulling the line through the incision. It is a feeeling of pressure, not pain. You can have it done during oupatient surgery if you aare really freaked out. I still have a bit of string overgrown, I think, and it itches all the time. Good luck with the procedure!
Nikki,
It sounds like you are seeing the same physician I will be seeing next week to discuss my options. Have you proceeded with participation in the clinical trial? I too have an aggressive form of diffuse scleroderma and was just diagnosed in September 2009.
HI I DONT KNOW ANY1 PERSONALLY BUT I READ AN ARTICLE ABOUT STEM CELL TREATMENT N IT WORKD... PLEASE LET ME KNOW THE OUTCOME. IVE BEEN DEALING WIT SCLERODERMA FOR 3YRS DIAGNOSED ALMOST 1YR AGO... LOOKIN 4 SO RELIEVE.
I was recently put on Cytoxan (four weeks ago) and am on the pill/oral form. I did not qualify for the Scot Trials as I have had Scleroderma for too many years. When I was first diagnosed I progressed very fast: from no hard skin to hard skin over many areas of my body in six months. At that time the trials were starting, but I did not have the lung involvement and didn't qualify (2000). I now have the lung involvement which is slowing me down quite a bit: I had to quit my job because of being hospitalized and not being able to keep up the work. This said I am very interested in what others say about Cytoxin. So far I am on a mid line doze and am gradually going up depending on how my body reacts to the drug. From what I have been told if I tolerate the drug I will be kept on it for a year and that results may show up slowly at first. I have heard some say that it has halted there progression of lung, heart, and skin hardening and others that feel that the skin has loosened and softened after several months after the treatment. I am hopeful. I have a double wammy..........medication induced diabetes! yuck! I wish you luck and would love to hear what you are finding out!
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