medication

[Colleen]

@ardyyurtyahoo-com channel blockers like diltiazem are commonly used to treat PH but not often on their own. Usually patients are on that and another treatment or two. When you see a list of PH treatments they often will simply say Channel Blockers but not offer types used.

My son was on diltiazem but also on Flolan, sildenafil, Bosentan, and diuretics, to name a few.

But every patient is different and some might do fine on just 1 or 2 treatments depending on the severity of the disease. But it sounds like you doctor’s hands are tied as to what he can treat you with, which is concerning. Would you consider or is it even possible for you to find another PH doctor? If your current doctor knows he can’t prescribe what you really need than he should be open to referring you to someone who can, or at least give you the chance to seek a second opinion.

Here is an article I found on PH and diltiazem that you might find helpful…Cardizem (Diltiazem) for Pulmonary Hypertension

Please update us when you can.

[jen-cueva]

Hi @ardyyurtyahoo-com, I am sorry that you are having some confusion with your current PH treatment. As @colleensteele mentions, many are on calcium channel blockers (CCB). Not all respond to CCB treatment, so other treatments are added.

My concern is the issue with the PH doctor. If you can, I would get a second opinion to be sure that there are no other PH treatments that may help you. Here is a link to help find PH doctors and accredited PH centers.

Please keep us posted if you decide to get a second opinion or the next plan of action from your current PH doctor. Is there a PH nurse that may be available more than the PH doctor?

[Donna Lambro]

Hi Randy,
I was put on diltiazem for racing heart by my cardiologist. I am also on sildenafil also by the same Dr. But that was several years apart. One time they tried to take me off diltiazem and I ended up in the ER. My heart was racing so fast, I really thought I was dying.
I was immediately put back on diltiazem and fully went back to normal rhythm. I’ve been saddened because my cardiologist that handled so many of my illnesses moved to a

different state. He said he was leaving me in good hands by a dr. That was just like him. Not so. He only deals with my heart. I asked him last week about other PH meds and he said I would have to talk to PH pulmonologist. I may try to see my old cardiologist who is in Chicago. I used to see him in the adult congenital heart program at Children’s Wisconsin.

[jen-cueva]

Oh no, @donnalamblue, that must have been scary for you. Your body was so accustomed to the diltiazem. I am grateful that putting you back on it helped you feel back to your norm.

Sadly, most doctors move at one time or another. This certainly makes it more difficult to build that doctor-patient relationship. I hate that you, too, are dealing with it. I had the same PH doctor for at least 10 years. I continue to contact him because we are more like family friends by now.

But my local doctor here in Texas moved after a few years, and I was so attached to her. Now, my most recent PH doctor is younger; therefore, he does not have as much experience with PH. I do respect him, but often he tells me that I am teaching him. LOL

I hope to find a new PH doc, maybe a cardiopulmonary if you are near one. How close are you to Chicago? I had a few PHriends there, so I know they have an excellent PH center. But if you are familiar and already have that bone with this doctor, maybe go there. I also know traveling to and from these doctors is often a long drive.

Have you already started this process? Please let us know how things go.

It is often an overwhelming experience trying to find a new doctor that you click well with. Here is one PH center that I found in Chicago. PHA offers several others; I include their link to the accredited PH Centers, they also have a Find a Doc page, too. Not all PH specialists are at accredited centers. It takes some time and money to be on that list. That is what my first PH doctor told me.

[Colleen]

@donnalamblue oh geez that must have been so scary! This is a good example of why we try to make any kind of changes to medications one at a time, so if my son has side-effects or an episode we know which one is causing them. Thank you for sharing that experience with us.

@terry that is interesting information about diltiazem. I didn’t know it wasn’t FDA approved.

[Terry]

I have been following with interest this topic and have been referring to Dr. Google lots primarily because I am not in the States.
From what I can ascertain.
A . Diltiazem is NOT FDA approved for PAH .
Extract’ Although not FDA approved for the treatment of PAH, CCBs commonly used are long-acting etc.etc. ’
B. Only PH clinics can approve and dispense the use of PAH approved drugs.
So ,as in Oz ,one doesn’t see an auto electrician to have the oil changed.

[jen-cueva]

G’day, @terry, Let me start by saying that the google machine often has old news or is not the best for rare diseases, like PH.

Yes, you are correct. Diltiazem is not FDA-approved specifically for PH. But rather an “off-label” treatment. Diuretics and oxygen are the same, not FDA-approved therapies for PH. But these off-label treatments have been studied and have proven some effectiveness.

Be careful what you find on google. When do you see your doc again?

How’s the misses? I am sending y’all positive vibes from Texas for a nice relaxing weekend.

As @colleensteele mentions, rarely is CCBs used alone in the treatment of PH. I believe only 10%; it could be lower by now. I had a PHriend who was on CCBs for years before adding a second treatment to her plan of care.

[jen-cueva]

@terry, I forgot to add this link that I found. You and others may find it helpful. Thanks again for your contributions to our PH forums. Our members are PHantastic. 😀

Stanford EDU

[Terry]

Thanks for asking Jen. The misses has had the cast removed however the fall has dented her confidence and she is unsteady walking . All’s well with me except we are heading into winter down here ,the cold lasts a couple of weeks where I live . Thats means ditching the shorts and T. and putting on a jumper. Life’s tough.

[jen-cueva]

Thanks, @terry, for the update. I am happy to hear that the misses have her cast off. I bet within a few days; she will be on the go. Then, you’ll have to chase after her. She will get there.

Ughh, the cold is no good for me, but it is hit and muggy here. Hurricane season starting soon. I am not ready for that, hehe.

Well, stay warm and use blankets if the shorts are not enough, hehe.

Y’all enjoy the weekend. Take care of each other.

[Colleen]

@terry I feel bad for your wife. It must have been disappointing for her to have issues instead of relief after her surgery. I hope she gains her confidence soon and feels better. Stay warm and keep us updated on how you and your better half are doing.