Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Dear Moonsung I was sorry to read about your daughter. Life is tough and very unfair. Connie's suggestions seem very sensible and helpful. Some other comments :- My wife has had rp for several years and now has significant damage to her trachea and nose. She has had eye problems but only temporarily ( no real ear problems apart from tinnitus ). I am not a doctor ; these are my comments based on observing my wife's condition and reading medical articles and this group's emails. No one knows what causes rp and no one has a guaranteed method of control. Why the disease fluctuates is not obvious . In my wife's case no one ruled out stress as an initial trigger but since then there is no obvious pattern. We think there are seasonal variations ( pollen, air quality ? ) but by the nature of the disease you just can not see when real damage is occurring until too late ( e.g. cartilage collapse in the nose ) I don't think you can tell whether ' stress' precedes a ' bad fluctuation ' or is merely a symptom of it .The most common treatment is steroids plus one or more immuno suppressants and it is clear from this group that individuals vary in their reaction / toleration. The most common is methotrexate and in my wife's case this seems to be working better than any of the others although the build up did seem to take a long time ( over 6 months ) She tried others ( cellcept, azothiaprine, cyclosporin ) but either could not tolerate them or they did not seem to be working. Apart from the antibiotic angle I think all you can do is quiz the specialist as to which immuno suppressants he thinks are really working ( the azothiaprine or the metho or both ? ) and whether others might be more effective. Like you I asked about more radical treatments but got the same answer that they carry real and significant risks ( e.g. immuno ablation and stem cell replacement has a 20 -40 % risk of death ) Chester, England IMPORTANT NOTICE: This email is confidential, may be legally privileged, and is for the intended recipient only. Access, disclosure, copying, distribution, or reliance on any of it by anyone else is prohibited and may be a criminal offence. Please delete if obtained in error and email confirmation to the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Dear Moonsung I was sorry to read about your daughter. Life is tough and very unfair. Connie's suggestions seem very sensible and helpful. Some other comments :- My wife has had rp for several years and now has significant damage to her trachea and nose. She has had eye problems but only temporarily ( no real ear problems apart from tinnitus ). I am not a doctor ; these are my comments based on observing my wife's condition and reading medical articles and this group's emails. No one knows what causes rp and no one has a guaranteed method of control. Why the disease fluctuates is not obvious . In my wife's case no one ruled out stress as an initial trigger but since then there is no obvious pattern. We think there are seasonal variations ( pollen, air quality ? ) but by the nature of the disease you just can not see when real damage is occurring until too late ( e.g. cartilage collapse in the nose ) I don't think you can tell whether ' stress' precedes a ' bad fluctuation ' or is merely a symptom of it .The most common treatment is steroids plus one or more immuno suppressants and it is clear from this group that individuals vary in their reaction / toleration. The most common is methotrexate and in my wife's case this seems to be working better than any of the others although the build up did seem to take a long time ( over 6 months ) She tried others ( cellcept, azothiaprine, cyclosporin ) but either could not tolerate them or they did not seem to be working. Apart from the antibiotic angle I think all you can do is quiz the specialist as to which immuno suppressants he thinks are really working ( the azothiaprine or the metho or both ? ) and whether others might be more effective. Like you I asked about more radical treatments but got the same answer that they carry real and significant risks ( e.g. immuno ablation and stem cell replacement has a 20 -40 % risk of death ) Chester, England IMPORTANT NOTICE: This email is confidential, may be legally privileged, and is for the intended recipient only. Access, disclosure, copying, distribution, or reliance on any of it by anyone else is prohibited and may be a criminal offence. Please delete if obtained in error and email confirmation to the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 In a message dated 08/27/2001 11:12:14 PM Central Daylight Time, Rpolychondritis writes: << I don't know I remember being scare at first but it was nothing to it. Hey I have found the IRS are pretty easy to work with, at least so far. >> Lu, Bless you for passing that along. I'm terrified about this, so can probably expect a flare real soon. ; ( Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 In a message dated 08/27/2001 11:12:14 PM Central Daylight Time, Rpolychondritis writes: << I don't know I remember being scare at first but it was nothing to it. Hey I have found the IRS are pretty easy to work with, at least so far. >> Lu, Bless you for passing that along. I'm terrified about this, so can probably expect a flare real soon. ; ( Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 In a message dated 08/27/2001 11:12:14 PM Central Daylight Time, Rpolychondritis writes: << and it is also Tax deductible. >> Lu, That's great! I'll be sure to keep the receipt in case we're audited for THIS year. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 In a message dated 08/27/2001 11:12:14 PM Central Daylight Time, Rpolychondritis writes: << and it is also Tax deductible. >> Lu, That's great! I'll be sure to keep the receipt in case we're audited for THIS year. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 " These symptoms are severe in every morning then improved at daytime. " Dear Moonsung Jun, I want to let you know that the mornings are always the most painful for me when I'm having my flares. I've always attributed it to the medicine wearing itself out (prednisone and ibuprofen/vioxx) at the 24th hour. I'm usually okay after I've had my morning dose. Like your daughter, I have tracheal involvement. My windpipe is half the size it used to be. I'm sorry to hear that your daughter has already had a tracheostomy as any type of surgery is stressful and should be a last resort. I have " episodes " of great difficulty in breathing. These episodes come on during times of exertion, so I've learned to walk slowly, take slow and concentrated breaths and to take elevators or escalators rather than stairs. I can see how your daughter's condition gets worse when you leave. Aside from exertion, my " episodes " appear when I am anxious or stressed, so I try to keep events that might cause anxiety and stress at a minimum. It's difficult to do. One thing that I'm looking into is taking classes like yoga, meditation, tai chi as these are all slow moving and breathing exercises. I wish you good luck with your daughter and hope that she is getting the best medical help possible. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 " These symptoms are severe in every morning then improved at daytime. " Dear Moonsung Jun, I want to let you know that the mornings are always the most painful for me when I'm having my flares. I've always attributed it to the medicine wearing itself out (prednisone and ibuprofen/vioxx) at the 24th hour. I'm usually okay after I've had my morning dose. Like your daughter, I have tracheal involvement. My windpipe is half the size it used to be. I'm sorry to hear that your daughter has already had a tracheostomy as any type of surgery is stressful and should be a last resort. I have " episodes " of great difficulty in breathing. These episodes come on during times of exertion, so I've learned to walk slowly, take slow and concentrated breaths and to take elevators or escalators rather than stairs. I can see how your daughter's condition gets worse when you leave. Aside from exertion, my " episodes " appear when I am anxious or stressed, so I try to keep events that might cause anxiety and stress at a minimum. It's difficult to do. One thing that I'm looking into is taking classes like yoga, meditation, tai chi as these are all slow moving and breathing exercises. I wish you good luck with your daughter and hope that she is getting the best medical help possible. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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