- This topic has 5 replies, 3 voices, and was last updated 3 days, 15 hours ago by Jen Cueva.
March 14, 2023 at 12:12 pm #37696Amit RamsinghaniParticipant
My mother 74 was on 3 L litres at home with Ambrisentan and Riociguat . Her oxygen was falling below 90 percent because of a pneumonia she got so we hospitalised her. The doctor then changed the medicine to macitentan, selixipag , and riociguat after 5 days which the oxygen increased to 50 Litres on the HNFC machine. Any anyone else used this combinations of medications and had this issue ?
Also Cell cept was given to her previously , can this cause pneumonia ?
March 14, 2023 at 2:57 pm #37700
Hi @amit-ramsinghani, I apologize for your mother’s pneumonia and low oxygen rates. I would guess this is partly because of pneumonia. That’s a lot to add to already decreased lung functions, like in most with PH.
I’ve been on Uptravi for years since it was first approved. As the PH team should inform you, it takes time to titrate or increase to the best dosage for your mother. If she recently started, this is probably partly what you are seeing in addition to the difficulties pneumonia has on her lungs and body. Have you asked her medical team their thoughts on why this is happening? I would suggest you ask them since they know much more about your mother’s PH stages and her other health concerns.
I tagged you in another post where others share their experiences with Uptravi.
I know that because CellCept is used as an antirejection drug, it lowers immunity. So, if her lungs were already impaired, this may be something to speak with her medical care team about.
As a daughter and caregiver, this must be difficult for you. Are you taking breaks for yourself? Do you have other support that can rotate the care with you? Please know we are here and want to support you as you go through this challenging time with your mom.
March 14, 2023 at 3:42 pm #37703Colleen SteeleKeymaster
@amit-ramsinghani I’m sorry to hear about your mother’s pneumonia and oxygen desaturation.
I don’t have experience with the treatments you mentioned except for CellCept. As @jenc mentioned, it is primarily used as an antirejection medication but is also known to be used sometimes for people with PH and/or Lupus.
My son was prescribed CellCept a few months prior to his transplant and then of course for several months after. It’s supposed to help improve breathing function.
Here is a link to case reports of PH patients who were placed on CellCept.
March 14, 2023 at 11:59 pm #37709Amit RamsinghaniParticipant
1)My other question was her Pulmonary pressure was 50 this was done by the ECHO not by right heart catheterization as the Dr said she may not tolerate it. Is the PH pressure of 50 of concern?
2)and how many years does one live on average once diagnosed with Pulmonary Hypertension?
3) Has any one done a lung transplant at 74 years old female or older?
4) Any alternative to taking steroids, I believe they weaken your immune system?
March 15, 2023 at 1:09 pm #37720
Hi @amit-ramsinghani, I was diagnosed 18 years ago this past Valentine’s Day. So, it all depends on what stage someone is at, other coexisting conditions, and overall health. It also depends on whether treatment started early in a diagnosis or later once the PH has progressed.
A pressure of 50 on Echo is something I would suggest an RHC is done. However, it sounds like your mother may have some underlying issues like pneumonia, which would make this a higher risk at this time. Did you ask the PH team there why they thought she might not tolerate the cath? What did they say?
Steroids help breathing and lungs, but they have side effects. It’s a Catch-22.
Can you talk to a social worker or case manager for support there? It sounds like you have so many unanswered questions. We are here for you, but her medical team is more familiar with her condition.
I’m sorry because I know this must be so difficult watching your mom and having so many unknowns. I’m sending some positive thoughts and light your way. <3
March 26, 2023 at 11:16 pm #37822Md. Abul Kalam AzadParticipant
I would like to know what is CellCept. Could you explain about it.
March 27, 2023 at 1:46 pm #37830
Hi @azad, Cellcept is primarily used for anti-rejection for transplant patients. However, it’s also used for other reasons, too.
Below is a link I found at Cleveland Clinic that offers some information on this medication.
How is your son doing this new week?
@amit-ramsinghani, how are you? How’s your mother doing? You’ve been quiet, so maybe you’ve been busy with her and talking with her medical care team.
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