Research & Development

Hi @aisha-abdullah, I am sorry, but if you read the link for the clinical trial, it offers more details. I have not used Tyvaso, so I am not familiar, nor have I been in that CT.

The pharma company that makes Tyvaso is United Therapeutics. Maybe this link about that treatment will offer some information on how to contact them. Unfortunately, I…[Read more]

How it Tyvaso can be used, I mean the process to be followed in using Tyvaso. Because it not available in Bangladesh. You are also requested to give me the contact details of the company from where I can get the medicine.

Hi @azad, thanks for your interest. Unfortunately, as of current, the CTs that I am aware of is here in the US. I can only imagine how much this would mean if your son was eligible for a CT here.

Also, having RV failure limits some of the trials. This is one clinical trial that I read about RV function. Tyvaso is an inhaled medication. What meds…[Read more]

I want to join in the clinical for my son. How can I join from Bangladesh? Could you please explain  elaborately about Bio news. How does it work specialty for the RV failure patient like my son. If any body help me in this regards I will be grateful to him/her.

regards

Azad

Bangladesh

This is BIG and I hope some of our members will consider the option! If you do and care to share about it, we would appreciate the input.

Aunt Lizzie. I totally agree with Terry. Don’t let the doctors dismiss what is the obvious. PH and PAH does link with low iron levels. I have not had to have an infusion yet, but do take high levels of iron 3x per day.You might go on line with the Mayo Clinic or others and show your doctors the findings. By the way, just love the written journey…[Read more]

@auntlizzie those darn cookie windows. I’m sorry you type your comment twice.

It’s a small world how you and @terryvapory are not far from each other. I’m enjoying the conversations between the both of you. Keep them going!

Well I started a reply to both you Colleen and Terry but the Cookie window came up and wiped me out (I think), so here goes again. Yes I am definitely going to speak to my various doctors about the possible connection between low iron and PH – a no-brainer now.
Terry I loved your post. Took me back to a Station out of Broken Hill. Tough mutton,…[Read more]

Just read your post Aunt Lizzie and it was a wow moment.
At one stage during my quest to find out why I could not breath I was sent for a bronchoscopy and my iron levels etc. were so low I was kept in hospital overnight and given an iron infusion ,blood transfusion and diagnosis I was losing blood somewhere.Subsequent Colonoscopy and Endoscopy…[Read more]

@auntlizzie there is no such thing here as being late to a discussion. In fact, we encourage revisiting former topics so new members have a chance to benefit and contribute to them. Thank you for bringing this topic back to the top.

I’m curious if since reading the article if you have plans to discuss iron deficiency with your doctor?

I am a bit late in getting into this discussion but just read the article 28 April 2021 on Iron Supplementation and impact or not on PH. Very interesting. In the last 8 years no doctor has mentioned the possible connection between PH and iron deficiency but I have had low ferritin 3 times and an iron infusion in 2016 and another due next week.…[Read more]

@valeriekv Susi was having technical issues posting but to this topic but I don’t know what she had to share about it. @s-steppins if you still can’t post to this private message me what you want to share and I will post it for you…then reach out to tech again for help.

Hi @valeriekv, No problem. I enjoy learning while helping others when I can. Nothing is too difficult here. Post your thoughts and questions at any time. That is how we learn and help one another.

How are you feeling?

Thank you all for responding!
I know I’ve brought up a difficult topic. Jen, thanks for the link, I haven’t heard of” Mitochondrial Diseases ” yet. I will definitely read about it. Your friend is very cool! When we look for answers, we become real detectives!
Colleen, do you know that Susi knows something about this topic? It would be very nice to…[Read more]

I read the articles, and I must say this is quite interesting to me. I had a PHriend for a short time who was also an MD. They thought that she had PH for some time. She did her own research and found that she did not have PH, but she had mitochondrial dysfunction.

She was telling me that to be sure that I have this ruled out because some of the…[Read more]

@s-steppins let me know if you are still having problems responding to this topic. I know Valerie would appreciate hearing what you have to share about it.