Medicines

[jen-cueva]

Hi @saksfifth44, I like your user name. Are you a shopper?

Welcome, I am not on Remodulin or Letairis but have been on Letairis. I do know that we have some who are on Remodulin and Letairis, too. Hopefully, you will find what works best for you as far as the remodulin. How long have you been on it? I read that you switched from Tyvaso to Remodulin.

I know for sure that @jenniferbeaty and others may offer some help, too. Here is a recent conversation about SubQ that you may find helpful.

[Lynn]

Difficult to manage desire. I can’t get to discussion you told me to look at

[jen-cueva]

Hi @saksfifth44, I have heard about the struggles with managing Remodulin. I hope that that, along with your Letairis, will help you with some of your symptoms soon. It sounds like the Tyvaso stopped working well for you, so your doctor switched that to Remodulin, is that correct?

As you probably already know, PH treatments are personalized, and we all react differently to the treatments. Let’s hope this combo works for you. You mention underlying lung disease. Do you also have COPD or another lung condition in addition to PH? Are they treating that some, too?

Can you see this if I post it this way? In posts where we may link something, you can click on the highlighted words, and that should take you there. But let’s try this for you.

https://pulmonaryhypertensionnews.com/forums/forums/topic/subq-issues/

SubQ Issues

[Lynn]

Yes this time I can see your post.
I have a lung condition called sarcoidosis

[jen-cueva]

Hi @saksfifth44, I am happy that you could view that this time. I am going to ask the forum members if anyone has PH and sarcoidosis. I will tag you so that you can find it easily. I have heard of others having both.

[Jacquelynn Segars Uhl]

I have CTEPH and had thromboembolic surgery to remove blood clot in my heart & lungs . This procedure was performed @ Duke in May 2013. I take Adempas and Ambrisentan. These drugs allow mw to exercise and live a normal life. I use a CPAP and 2 liters of O2 to sleep @ night.I am a lucky woman.
[email protected]

[jen-cueva]

Hi @jacquelynnsegarsuhl, I am happy that you had the PTE surgery and doing well. So many success stories I have read in my years with PH with those who have this surgery. I know some who are not on any PH meds since and others one or two, but all do much better after the blood clot issue was resolved.

I am hopeful that you will continue to be blessed and lucky. Thanks for sharing your story with us. Are you a librarian? There is an email under your post.

[Jennifer Beaty]

@saksfifth44 I don’t have sarcoidosis. I take Remodulin and Adcerca (Tadalafil). I started with Letairis but still had severe shortness of breath. That’s when my doctor switched me to Tadalafil. I’ve not had any problems with that combination.

I often compare our search for the right combination of meds to that of a diabetic. Sometimes it is a case of trial and error to find what works best for us. I certainly wish you the very best. Feel free to tag me any time if you have questions.

[Colleen]

@jenniferbeaty very true. It is more often than not a case of trial and error finding the best combination of treatments and dosages. @saksfifth44 it sounds like you are finally on the best treatment path. Keep us updated on your progress.

[jen-cueva]

Hi @jenniferbeaty, so true about the trial and error. It can be a challenge and take time as our bodies react so differently. I think that some get caught up in what helps others and get disappointed when they do not see the same results. In time, as you said and with a few ups and downs, maybe more, LOL, we eventually find what works for us.

With time, I have noticed for me the meds seem to wear off some. My PH team says it is like they are not reactive anty longe to that combination. This is when we switch things up a bit. I am grateful that this far, all have been oral meds. But I am hoping that my Uptravi and Revatio high doses will keep me going for much longer. I am grateful for the many new treatments available just since my diagnosis in 2005.

Thanks for sharing, Jennifer. How are things going for you this week?

[Jennifer Beaty]

Hi @jenc. Things are going very well for me this week, thanks! You’re so right about suggestions! I get disappointed when one person’s suggestion doesn’t work for me. For example, someone said to try putting my site in my thigh. BIG mistake. BIG, BIG mistake, LOL! I couldn’t walk for a week. I cried every time I moved. I will NOT make that mistake again. LOL. It’s funny now. But it sure wasn’t then. But it hasn’t deterred me from trying new or different locations.

I’m glad your oral meds are working well for you. I too hope they continue to help for a long time to come.

[jen-cueva]

Hi @jenniferbeaty, I am happy to hear that things are going much better for you this week. Yes, I recall when you shared about the thigh site, it sounded horrifically painful! I cannot even imagine. But, when you are trying spots, it is difficult not to try places where others have had good luck with. I am hoping this means that you are finding a few “just right” sites for you. At least, hope for improvements as you try new sites. Your pain tolerance must be higher than mine.

Thanks for sharing.

[Md. Abul Kalam Azad]

Could you please elaborate the surgical procedure you performed @ Duke in May 2013 and the medicine Adempas as well. What is CPAP? I wishes you good luck

[Colleen]

@jacquelynnsegarsuhl I believe @azad is asking about the surgery you had in 2013. Can you provide some information here when you have time?

@azad I will start a topic regarding CPAP and Adempas to make it easier for you to follow. You have excellent questions. Thank you!

[jen-cueva]

Hi @azad, I am not Jacquelyn, but I have known others that have the PTE surgery for CTEPH. This is a surgery performed for PH patients due to blood clots in their lungs. This link may be helpful as San Diego is one of the top hospitals that perform this surgery.