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Post by kathy123 on Jun 16, 2009 13:54:18 GMT -5
I was diagnoised in 2005 with diffuse sclero. I was on methotrexate for about a year and a half. Itdid nothing to help and disease progressed. Luckily I have skin hardening in my arms not many problems internally. I had all of the usual problems, hands curling, fatigue, muscle weekness ect. I was later prescribed cytoxan and within 6 weeks my hands were uncurling and all of my other symptoms were dissapearing. I was on cytoxan for about 18months then switched to Imuran. That was about Jan of this year. I have also been on Ap for nearly20 months. I am now back were I was before starting Cytoxan. The fatigue is back , I have lost about half of my muscle strength. My skin is once again so painful and the skin tightening has spread. Before it was just my arms it now is arms,back of legs, abdomen. I never had to take as many pain killers as I do now. I called the sclero doc on Fridayand she called me today. She gave me an appointment for Thursday. I will try to give you all the scoop on Thursday or Friday. I am trying to stay hopeful. I think this is just a setback because of the medication change in January. All of the cytoxan is out of my body now so the sclero is once again trying to take over. I forgotten how much skin tighening hurts. Anyon with any thoughts about this, please post. Kathy
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Post by kathygirl on Jun 16, 2009 13:59:40 GMT -5
Kathy123 is also Kathygirl. I got my name mixed up with another board. Kathy
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Post by steve201 on Jun 16, 2009 14:23:42 GMT -5
kathy....man..sorry to hear that your not doing well.....I don't have anything except maybe time for stem cell transplant or something more drastic..maybe going back on cytoxan and minocycline will reset it......I don't know what could be more drastic but keep us informed...your in our thoughts and prayers...
Steve
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Post by michele on Jun 16, 2009 15:40:03 GMT -5
I'm sorry to hear of your backslide. It's so hard when we're doing so good and then we're not. I've been up and down and feel your emotional pain Unlike you I have internal issues and very little skin, but the little I have gives me a tiny window into what you're experiencing. Glad your doctor is seeing you so soon! Michele
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Post by jeffn on Jun 16, 2009 15:59:57 GMT -5
Have you done any IV anti-biotics or just mino? Is your doc AP friendly or just giving the mino to you because you asked? Sorry you are going the wrong way presently.
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Post by Cubby on Jun 16, 2009 17:07:28 GMT -5
KATHYGIRL: I am just SICK to hear what is going on with you!!!!!Sounds like the Imuran is not working. Is it possible for you to go back on the Cytoxan and the antibiotics as Steve suggested? My thoughts and prayers are with you. PLEASE let us know what is happening.
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Post by sherion on Jun 16, 2009 19:05:30 GMT -5
Kathy, I am so sorry you are starting to have more trouble. I sure hope your doc will be able to help you. The IV that Jeff mentioned sounds like maybe something to try. Let us know what the doc suggests.
Sherion
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 17, 2009 0:09:48 GMT -5
Hey Kathy, did Sindu put you on ap?? Cause when I asked Lee about it last month, he told me there wasn't enough info on it.... I better be seeing her for my app't at the end of July, I feel the same way as you do and don't want to see Lee. Let us know what Sindu says. Hope to see you soon. Linda
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Post by kathygirl on Jun 18, 2009 10:45:59 GMT -5
Thanks everyone for your responses.I would love to try IVIG and IV antibiotics but cant find anyone at this point that is comfortable doing it. Last Jan when the doc decided to switch me to Imuran I got drug induced hepitiis. I had to stop taking all meds for about 2 weeks and start slowly again. I have been at 150 mgs of Imuran for about 6 weeks now. Unfortunately all of the other Immunosupressants are out of my body so the sclero is trying to take over again. Cytoxin was such a hit for me but the doctors are so concerned of the cancer risk from it. There is a cancer risk from Imuran as well but they dont seem as concerned about that. Sometimes I feel like a talking guinea pig. I am off to see the sclero doc and will tell you what she said. Keep well everyone. Kathy
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sammie
Junior Member
Posts: 64
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Post by sammie on Jun 18, 2009 11:06:32 GMT -5
Kathy, Sorry for all the problems resurfacing. If you can take AP, I think you should try it. I can't take it but I know a lot of people it has helped.
I do get IVIGs and I ust say they have helped my lungs and I also notice my bloodwork is much better, all the different white cells are not so 'out of whack'
Good luck to you.
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Post by Cubby on Jun 18, 2009 16:49:09 GMT -5
Kathygirl: What state are you in??? I know Sammie goes to Hopkins in Baltimore. So does Lauren--she is on INSPIRE. As for the IV antibiotics, there is a doctor in Riverside, Ca. and some others who do the IV antibiotics in other states. If you are interested, I will try to get more info for you.
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Post by kathygirl on Jun 18, 2009 19:11:14 GMT -5
Hi Sammie I am taking AP and I know it has helping but cytoxin was the heavy hitter for me. Cubby I am from Canada and we seem to be a bit slow when it comes to IV antibiotics and IVIG treatments. There was a AP doctor in MIssissauga Ont (not far from where I live) he was recommended by RBF. Unfortunately he is having difficulty keeping his medical lisence because of giving IV antibiotics. I have a couple of other leads on AP doctors, so hopefully one of them may work out. I just got home from the sclero doc. She has upped my prednisone and wants to see me in 2 weeks. She wants to give the Imuran enough time to work. If it dosent work or things get really aggressive then she will make more changes with meds. As ong as the prednisone will help with the muscle pain and weakness, I am willing to wait alittle bit to see if the Imuran will work for me. Still going to explore other treatments in case they are needed. Kathy
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 18, 2009 20:38:31 GMT -5
Hi Kathy, I too am looking into other treatments in our area. I agree what you said that Canada is behind. I think we had this conversation over a pm. I hope the changes that Sindu has done will start to help you. She'll probably discuss your case with Lee for options. PS; I'm still at the cottage, too tired to drive home today. I have to go home tomorrow, running out of my effexor and my insurance won't cover cost of this med if I re-fill more than a wk out it's stupid...... Will call you when I get home.
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Post by antonietta46 on Jun 19, 2009 10:02:08 GMT -5
Kathy,
I'm just reading your post, I'm sorry for your set back, hopefully the doctor will have some answers for you - keep the faith!
Antonietta
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Post by littlered on Jun 19, 2009 12:56:17 GMT -5
Kathy So sorry to hear you aren't doing well You are in my thoughts and prayers Little Red
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