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#1 JG07

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Posted 08 May 2008 - 02:48 PM

I had a PFT test and it showed my dclo is 68 - it was 80 about a year ago - My rhem sent me for a CT lung scan today - I have been more tired than usual and the other day - I feel pressure in my chest - I know that this is not a good turn of events - Rhemy say that this change requires major meds - I am expecting a call from her tomorrow -any advice

#2 summer

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Posted 08 May 2008 - 11:36 PM

Hi JG07,

 

I can relate to how you are feeling, my DLCO has also been going down in numbers, not quite as low as yours, but still a change. I am due to have my PFT next week - every 3 months now, and am a bit nervous. Try not to worry, worrying won't change things, but will only exacerbate any symptoms you may have. I'm sure someone else will pipe in soon.

Take care,

 

Celia



#3 janey

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Posted 09 May 2008 - 04:14 AM

Hey Darling,

 

It's good to see that your doctor is jumping on this so quickly. Over a 3 years period my DLCO went from 92 to 49 dropping every six months. Two doctors discounted the steady decline, but the third doctor said it was past time to do something about it. The sooner you catch these problems, the better the results. So just hang in there and be thankful that you have an aggressive doctor working for you. The CT should be able to show if there is any fibrosis and its location. My CT 1.5 years ago showed only lower lobe fibrosis and that's where it has stayed thanks to immediate treatment.

Please let us know the CT results. I know it's going to be hard if more meds are required, but it could be worse if this kind of thing goes untreated. If there is something going on, You need to stop it in its tracks now.


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#4 JG07

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Posted 10 May 2008 - 08:54 AM

What type of meds did they start u on - Is there one " better" than the other. I just don't understand the reason for the drop - I did not get a call back from the rhem yet - but I have my CT results - It looks like the scaring is stable compared to last CT -

#5 JG07

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Posted 15 May 2008 - 10:59 AM

My rheumy has suggested to start Revatio, and next week Cellcept because the arteries around my lungs are narrowing and causing shortness of breath . Pulse oximetry at rest is in 70's. Echo showed pressure 17, then 2 weeks later 27.

 

I had a lung quantitative scan today. I am on oxygen all day and extremely tired. I have an appointment again next Wednesday. My rheumy is at the Univ of Miami. She is certain it is PAH and does not want to subject me to right heart cath. Anyone on this med combo ?

Diagnosis scleroderma, Raynauds, Sjogren's, pulmonary fibrosis 2006.



#6 janey

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Posted 15 May 2008 - 03:56 PM

JG,

 

That O2 sat of yours is certainly justification for the supplemental oxygen. I hope you are feeling better as a result of the extra O2. I'm certainly no doctor, but your PA pressure is considered normal in most the information I read. My PA based on the echo is 30 which my pulmonologist considers high normal. It was at 45 before, but I was put on Bosentan which brought it down. Now it's stable. Do you know if your PA pressure increases with exercise? Actually, the right heart catheter is only way to get an accurate reading but you doctor is like mine and didn't want to put me through it. Since my PA pressure had continually increased over 3 years, she put me on the Bosentan to stop it and it did.

Revatio is sildenafil or viagra and has proven to be effective for PH. Both these meds (Bosentan and revatio) have also been proven to lessen the effects of Raynaud's. It's worked for me. A good side effect for a change. smile.gif Cellcept is an immunosuppressant that has had a couple of studies that has shown some effectiveness toward pulmonary fibrosis. I've been on it for a year now and my DLCO has been stable for the first time in 5 years. So with both Cellcept and Revatio it sounds like your doctor is addressing both PH and pulmonary fibrosis. Please discuss all of this further with your doctor.

I hope this information is helpful.


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#7 JG07

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Posted 16 May 2008 - 04:37 AM

I do want to have as much info as possible when I go to my appointment on Wednesday. From what I have read here, an aggressive approach has to be taken for PAH - and the Revatio alone is not going to be enough.

 

Tracleer seems to be mentioned, as well as Bosentan. I have read about cyclophosphamide also. This gets very confusing and depressing.



#8 janey

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Posted 16 May 2008 - 04:54 AM

JG,
Tracleer is Bosentan. It's very expensive (about $5000 / month) so for insurance to pay it, one must have good justification. Again, I'm no doctor, but a PA pressure 27 would not seem like much of a justification. ECHOs are not an accurate method for measuring the PA pressure because of all the variables involved. On the other hand, your pulse O2 is total different story. Now it's a matter of what is causing it - PH, pulmonary fibrosis and both? Cyclophosphamide is another immunosuppressant that is used for scleroderma with pulmonary fibrosis. It's effect on PH has not been determined that I'm aware of. Below are two links you might want to take a look at:

Pulmonary Hypertension Treatments

Pulmonary Fibrosis Treatments

I think you'll find some great information from these studies. It's good to see that you're getting prepared for Wednesday's appointment. My doctors have all appreciated that fact that I do my homework before our appointment. Please let us know how the appointment goes.


Janey Willis
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#9 LMS

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Posted 16 May 2008 - 08:20 AM

Janey,

 

I am scheduled to have a PFT and pulmonary consult next week. I am curious to know more about the symptoms. I am experiencing shortness of breath on exertion and at rest. I have developed a very hard dry cough that feels like I have a bad chest cold with no phlegm, and of course fatigue. I can't do the usual activities without feeling out of breath. Are my symptoms the typical ones that other patients experience? And what is the difference between alveolitis, ILD and PAH? Thanks.

Loren



#10 janey

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Posted 16 May 2008 - 10:45 AM

Loren,
Your symptoms are typical of what I have with the exception of having shortness of breath while resting. As long as I sit, I'm fine. It's just when I start moving that breathing becomes a problem. ohmy.gif I do have a chronic dry cough and it gets worse when I move around too fast or too much. I'm going through cardiac rehab at the moment and it's embarassing because I sit on the machine and cough. I'm always being asked "Are you o.k.?"

Here's what I found about the differences between aveolitis, ILD and PAH.
Alveolitis is inflammation of the alveoli in the lungs and can lead to interstitial lung disease. Wikipedia.
Pulmonary Fibrosis is a scarring throughout the lungs. It is synonymous with diffuse fibrosing alveolitis. MedicineNet.com.
Pulmonary (lung) fibrosis, is a scarring of the lungs, and is the consequence of untreated pulmonary inflammation (alveolitis). It is often also referred to as interstitial lung disease. ISN
Pulmonary Hypertension (PH)is high blood pressure in the arteries which take blood between the heart and lungs. ISN

Hope this answers your questions.


Janey Willis
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#11 JG07

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Posted 20 May 2008 - 03:52 PM

Believe it or not I had another echo today and rsvp pressure is now at 40.  I have an appointment tomorrow and I have been waiting for approval from my Ins for Revatio which was prescribed last week when the pressure went from 17 to 27. The numbers should be enough for the ins to give the okay. I don't know if that med alone is enough or what else to expect. It seems like every week is a new adventure.