Tagged: diagnosis, PH, sarcoidosis
- This topic has 6 replies, 4 voices, and was last updated 2 months, 1 week ago by
Colleen Steele.
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October 8, 2020 at 10:56 am #27628
Jen Cueva
KeymasterWe have a new forum member, Lynn, @saksfifth44, who wants to know if anyone has PH and Sarcoidosis. If you have both PH and sarcoidosis, please share your experience with her. I am certain that having both affecting your lungs must be challenging to manage.
For those who want to learn more about sarcoidosis, check this link.
If you have both, were you diagnosed with PH or sarcoidosis first? We want to hear from you.
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October 8, 2020 at 1:41 pm #27631
Lynn
ParticipantAlso wondering if anyone takes Letaris and Remodulin
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October 9, 2020 at 1:42 pm #27655
Jen Cueva
KeymasterYes, thanks for adding that @saksfifth44. My apologies as I did not add that to the post. I am hopeful that anyone on Letairs and Remodulin will share their experiences. As I mentioned, I have only taken Letairs with other medications.
How are you doing today? Did you speak with your doctor about the increased shortness of breath?
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October 9, 2020 at 2:41 pm #27664
Lynn
ParticipantI started the Letaris and my doctor took me off it because I got severe swelling.
He said frequently happens when you take Letaris and other vasodilators -
October 9, 2020 at 3:03 pm #27668
Jen Cueva
KeymasterYes, that is why I stopped Letairis, too. I had an increase in swelling. Are you having any improvements with your shortness of breath?
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January 2, 2021 at 8:14 pm #28506
Becca m
ParticipantThey are 95% sure I have sarcoidosis and I also have pulmonary hypertension but I do not know yet if they are related. Whatever you do, do not google sarcoidosis related pulmonary hypertension! The internet will only tell you you’ll die soon.
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April 21, 2022 at 9:02 pm #34077
Colleen Steele
KeymasterI received an email from the PH Association today about April being Sarcoidosis Awareness Month. They offered a lot of information and resources that I thought might be helpful. Click on the links below.
And the following is information many of our members might find helpful. It is about…
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This reply was modified 2 months, 1 week ago by
Colleen Steele.
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This reply was modified 2 months, 1 week ago by
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