Hi Ann the only medicine I have had side effects from was the uptravi. I was able to push through the side effects. And now I have no side effects.I wish you well with your meds . God bless.๐
Thank you. That was very informative.
Hello, first of all, it is important to know exactly what type of PH you have - which group you are in! Did I copy you the information on the three pathways? https://www.pahinitiative.com/pah-pathways. If it is confirmed that you are PAH, then at least two of these pathways need to be addressed to help to bring things back into balance. Within each pathway, there are a number of possible treatments. Because I am idiopathic (precapillary) PH, the preferred choice certainly here in Europe is a combination of Bosentan and Sildenafil - Bosentan addresses the endothelin pathway and the sildenafil addresses the nitric oxide pathway. My pulmonologist did say that if I did not respond well to these, then she may need to add a third medication - I assume one to address the third pathway - prostacyclin - although at this time I have shown no evidence of a risk of clotting. It may also make a difference as to whether you are precapillary (i.e. it is all to do with the pulmonary artery and right side of heart, with the lungs functioning well) or postcapillary where there is also a problem with the capillaries in the lungs. The dosages, I can only assume, depend on how high the pressure is. If you are not PAH, and fall into a different category, then a different treatment regime will apply. It is really important for you to push for a very clear and definitive diagnosis. Good luck with the right side catheterisation. It is an unpleasant thought, but after the local anaesthetic, I did not really feel anything other than some pressure when the doctor put in the catheter. Just lie still and think of happy things!!!! Keep in touch.
Hi Ann, Did you happen to have any good sites which describe the drug treatment options for your type of PH? I am thinking I should read up before I meet with the specialist on Friday so that I at least can be more aware of options and ask questions. I know I will have to have the RHC first, but then he mentioned that he would then just start me on mediation after learning the results without seeing him again (since it is so hard to get appointments in this area). I would see him again after 3-4mo according to the nurse.
Lot of potential side effects. Let's hope I do not experience many, otherwise you just end up on a downward spiral of more and more medication to treat them. Something I have so far avoided all my life!