Hello and thank you for taking my question. I am a 30 year old female who has pulmonary hypertension (mean pap in the upper 30's) and diastolic dysfunction secondary to lupus. I've been told that I can't take the medications normally given for pulmonary hypertension because of the diastolic dysfunction. Also, I can't take beta blockers, they cause shortness of breath. My rhuematologist has told me that he wants me to use my oxygen on 2L 24 hours a day, regardless of the fact that my O2 sats are usually in the mid to upper 90's. The oxygen does help when I'm having palpitations and very strong/fast beats. He says this is to keep my heart from working harder than it needs to. I thought using oxygen when you don't need it was dangerous.
My questions are:
1. Is using oxygen to treat a heart condition, without having a low saturation, normal and safe?
2. Since my pulmonary hypertension can't be medicated, should I expect the lupus to continue to make my heart worse? (He has started me on plaquenil)
I know you can't make any specific statements to my case, but your thoughts on the subjects would be greatly appreciated.
Lupus is a difficult disease to manage. The range of symptoms and damage to the different body systems it can cause is marked. Pulmonary hypertension is also a difficult disease to manage.
Generally, I would recommend seeing a pulmonary hypertension specialist in order to treat your disease. Im not sure why you are oxygen constantly, unless there is an issue with your oxygen saturation which could come from lupus lung disease. Since you state this isnt the case, Im not sure why its being used. There are multiple different medications for pulmonary hypertension. Your PA pressures are elevated, but not severely. Im not sure why they state they cant treat your with either beta or calcium channel blockers. These medications are often used to treat diastolic dysfucntion.
There are several centers that are specialized to see patients with lupus. Johns Hopkins has a center, as do most tertiary centers. It might help to seek consultation at that type of center.
1. As far as extra oxygen is concerned, I was under the impression that it really isn't going to help you.
2. As far as the lupus is concerned, I would venture to say that it will continue to adversely affect your heart. The pulmonary hypertension is something that just hardly ever gets better on it's own, but there are medicines that can help, but I can't remeber what they are. I also beleive that sometimes it takes a few months to a half a year to get used to some medications, but since I don't write out prescriptions, I really can't judge how this would affect your situation.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. MedHelp is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.