Posted 05 July 2007 - 09:25 AM
Just wanted to share my experiences with a breathing technique and its effect on my lung capacity. I was diagnosed with Scleroderma in April 2005. I started with Cuprimine and my PFT showed FVC of 2.81 liters. Cuprimine did help a little in softening my skin for a couple of months, but it did not show any further improvements and FVC went down to 2.61. I have been on Cellcept 3000 mg since December 2005. In June of 2006, my FVC was 2.56 liters So Cellcept helped in stabilizing my lung capacity. In December 2006, I took a course in breathing exercises offered by one of the prominent non profit organization working around the globe. It consisted of 18 hours of training over 5 days (3 weekdays in evening 7-10, and weekends 9-3) and costs around $400. It is offered in majority of metropolitan areas of USA and some international locations. It was recently offered to Iraqi people as a way to reduce stress and tension.
It consists of rhythmic breathing exercises, combined with yoga and meditation.
They further recommend continuing the breathing practice for 20 minutes a day on empty stomach. My PFT, done in April 2007, showed improvement of FVC of 2.81 liters almost at the same level when I was diagnosed. Also, I used to have severe burning/itchiness in my chest and throat, which went away completely. Based on the results my pulmonary specialist asked me to reduce dose of Cellcept from 3000mg to 2000mg a day. Although, I still have severe cough. I cannot be sure of all benefits just due to the breathing exercise. I am not sure whether I can post the link to their website, but send me a private message and you can investigate further claims made by them as benefits of their breathing techniques. You can decide for yourselves whether it is something worthwhile for you.
I hope this can help some of you with severe lung problems.
Posted 05 July 2007 - 01:01 PM
Thank you so much for posting that! It's amazing how much help one person can offer to so many of us on the board, and this is a huge issue. Years ago the American Lung Association had a commercial that said, "When you can't breathe, nothing else matters." It's so true, and although I haven't had my lungs tested yet due to just finding a rheumatologist a month ago, I've been battling with pain, often severe, while inhaling since last year.
I don't know if it's the same thing that is being taught, but the way I had to learn about breathing, meditation, relaxation, etc. was during child birth. Nothing like crash course training while in the field! My lungs don't seem to expand well these days, but I've been noticing some improvement on certain days, or at least not any worsening compared to a year ago. Who mentioned in another post that this condition is like a part time job?? It's true! However, what one learns helps everyone.
Thanks again, and if you'd like to send me a PM with the address for the website, I would greatly appreciate it.
All the best wishes and thoughts to you and your family,
Posted 05 July 2007 - 03:16 PM
Thanks for taking the time to share such great information. At this point my lungs aren't involved, but this is great to know.
Posted 06 July 2007 - 01:39 AM
I think that is great. Could you tell us the name of the program so I can see if it is offered around here? I have mild lung issues at this time but I would like to keep it in mind if things get worse. I think self therapy is the best medicine. I am so glad you are doing so well. Susie54
Posted 06 July 2007 - 06:25 AM
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 07 July 2007 - 03:28 AM
I would be interested in finding out more about breathing exercises as I have early stage lung involvement, would you please PM so we can talk further.
Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive
a little bent and broken and almost beyond repair!
Posted 07 July 2007 - 07:38 AM
I found the idea of breathing exercises to be good. I would love to know the site to check out, as I have pulmonary fibrosis and would really like that information.
I'm on cellcept but not as high dosage as you are and my lung volume test goes down just a tiny bit every time I have my PFTs done.
I use one exercise I found on the COPD site where you breathe in for, let's say 4 seconds, and then you breathe out for at least 8 seconds. The pulmonary therapist at the hospital told me to practice it breathing out slowly but for as many seconds as you can possibly manage to strengthen the muscles.
Also, in 2 weeks I'm supposed to begin pulmonary rehab and hopefully learn more. If anyone is interested I can post what they tell me.
Posted 08 July 2007 - 10:13 PM
Welcome to the ISN Sclero Forums, Annie N. So glad to see that you have found us and started posting. This is a terrific spot for information and support. I look forward to reading the results of your pulmonary rehab, and I am sure many others will, too. I hope you will find time to tell us a little more about yourself in our Getting to Know You thread at the top of the page.
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International Scleroderma Network (ISN)
Posted 11 July 2007 - 04:41 PM
Just want to thank you for the information regarding the breathing exercises. I'm going to check it out - there are 2 addresses near me to contact.
Posted 12 July 2007 - 06:51 AM
Sorry I am late with this. I have been out of town. Thanks for the information. I am sure it will become helpful down the road. Susie54
Posted 12 July 2007 - 02:34 PM
One of the exersizes I was taught to do for breathing was inhale through the nose. ( Smell the Roses) Exhale through the mouth. ( Blow out the candles) Each time breathing in more air and exhaling harder. When I first started this exersize I would start coughing. Now, I can do it about ten times and more forcefull than two months ago. Try it. It really has helped me. Sheryl
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