Pulminary Hypertension

• By suzmb
• Posted November 4, 2009 at 4:46 pm
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Hi
I also have pulmonary hypertension and pulmonary fibrosis. My pressures were in the 60's with right heart cath. However, my drs believe the pulmonary fibrosis is causing more of my lung issues than the PH. Have you been checked for pulmonary fibrosis? Usually, chest x-rays and/or CT scans are used. Have you had pulmonary function tests? Six minute walk test? I take Revatio and also Letairis for PH, Cellcept and Prednisone for pulmonary fibrosis, and a host of other meds for other symptoms. I also need to use supplemental oxygen at night and upon exertion. Do not wait to address the lung issues - they can progress pretty fast. I also go to pulmonary rehab 2-3 times per week. I had been diagnosed with scleroderma in Feb. 04, but my lung issues really did not become a serious problem until fall 08. Keep us up to date.

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• By dani0518
• Posted November 4, 2009 at 10:53 pm
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hi suz i want to ask u how is the cellcept helping u..i also suffer from pulmonary fibrosis due to the sd which is limited for me..i am only taking predisone nothing for the lungs i asked my doc about cytoxan due to the shortness of breath and chronic cough..its so sad that they rarely have any docs who knows about sd and how to treat the symptoms i am so tired of this and getting depressed about it but i keep praying and hopeing for the best..please advise on how u doing with ur meds for the fibrosis i would really appreciate it.....thx

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• By suzmb
• Posted November 5, 2009 at 9:12 am
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Dani,

Honestly, I can't say whether the Cellcept is the answer. It appears to be working for me but I don't think drs can point to just one thing. I think it is the combination of meds, the use of oxygen, and my efforts to go to pulmonary rehab that have helped me a lot. I was doing really great during the summer (my best season here in the midwest), but now that the weather is changing I am finding that my breathing is once more becomming more difficult (not to mention the Raynauds flares up more at this time) I also am just getting over the flu or something that I picked up from my kids so I haven't been feeling that great as of late, but I am so much better than I was this time last year.
I too had a chronic cough (still have a cough, but not as bad) Finally, after months and months of the horrible cough one of my two pulmonologists prescribed Advair and that has helped me.

You just have to be very persistent with your drs - which I know is hard when you feel sick and depressed. The drs kept telling me not to worry about the cough - but I was coughing so much I had horrible chest/rib cage pain that I couldn't even sleep!
It was such a relief to finally have one dr say OK, let's try this to control the cough. And by no means did it improve right away, but it is better.

I don't know much about Cytoxan so I couldn't offer any advice there. Maybe others can chime in about that. The Cellcept is an immune suppresant so you have to be careful about being exposed to germs, infections, etc - which is hard for me with two school-aged children. However, I didn't experience any side effects with it.

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• By dani0518
• Posted November 6, 2009 at 3:21 pm
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thanks so much suz for your respond i am doing jus that being more persistent with my doc and now i am going to be trying cytoxan by iv monthly and i no it is a lot of side affects but im going to pray and try it any way my cough is so bad that i have being taking cough syrup with codein for 2 years now which is not good i think i am addicted to it so im trying to pull away from it....life hasnt stopped i have to keep on and praying for the best.....

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• By gettingby
• Posted November 19, 2009 at 8:39 am
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Hi Carmie-s,
My PH pressure is 72. The pain in the joints and lungs were so bad that my Doc put me on Hydrocodone 10/500 three times a day. Addicted or not it stopped the pain and I am able to have very good days now.
The med. seems to boost my get up and go. If I have to live with this illness I rather feel good with it by taking the Vicodine. There is just not enough studies being done on some of the rare illnesses that we have.

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• By SamDeTray-11
• Posted November 19, 2009 at 9:02 am
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Carmi here is the link for Pulmonary Hypertension Association Website. http://phassociation.org/


They have alot of great information plus message board you can look around on.

I also belong to this group and I am a support group leader in my area for patients with PHA.

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