Mastodon Remodulin —


Uptravi isn’t working for me. I’m frustrated and sad. After all those months (Mar-Oct) of pain and suffering in 2016 to get up to the highest dose I had maybe three good months (Nov-Jan) and then I started to go swiftly downhill again. My tests in Feb came back pretty bad, and my shortness of breath (SOB) is much worse lately. During those three good Uptravi months I turned my nighttime o2 down to 2 lpm and I barely needed oxygen in the daytime at all. Now I’ve had to turn my o2 up to 4 lpm and use it a lot in the daytime as well. Meanwhile I still have constant unpleasant painful side effects.

The only remaining (last resort) therapy for PAH is infused drugs, which means wearing an infusion pump 24 hours a day forever. This freaks me out and I’ve been avoiding it for 14 years by the lucky timing of a brand-new drug being made available just when I needed stronger therapy (Tyvaso, then Uptravi). But this time there’s nothing new available or coming in the near future.

I’ll be going on Remodulin (which spellcheck changes to “remodeling” every single time).

My doc is pushing IV infusion but I’m insisting on subcutaneous (SQ) for a variety of reasons. Smaller pump, no hospital stay to get started, less risk of infection, no risk of blood clots and stroke, less danger in general. The drawback is several days of severe pain cause by the irritation of the medication where it enters the body under the skin. This, they say, lasts up to a week after you start a new infusion site, and you need to start a new infusion site every six weeks or so, generally. (This seems to vary wildly from patient to patient, as does the severity and duration of infusion site pain.)

So this sucks.

I’m clinging to the very real possibility that Remodulin might make me feel and breathe better in spite of the pain and annoyance.

They made me go up to UCSF Medical Center to talk with a social worker for a couple of hours on Friday, and now we wait insurance to approve my new meds, and then they will try to talk me into an IV catheter again, and then I will insist on SQ infusion because I am a Difficult Patient, and then the specialty pharmacy will send a homecare nurse to train me how to deal with these new meds — pump and catheter and everything. Ugh. I wish they’d just give me an instruction manual.

Category: Blog 7 comments »

7 Responses to “Remodulin”

  1. CarrieMtn

    Kayray – My (now teenage) daughters and I listened to your stories quite a while ago. I’m not sure why we stopped. Life must have gotten busy. Today my 13 year old wanted to listen to the Hobbit again. So I looked you up. I’m so glad to have found you again. Both of my teenage girls commented on how they love the way you read. I’m sorry to hear you are hurting. I haven’t read back far enough to know your disability, but it sucks to be in pain so often. Please know our family in Colorado appreciate you and send you healing thoughts.

  2. kara

    That’s so nice to hear! Welcome back and thank you for the good wishes :) Perhaps the girls would also enjoy my recordings of The Lord of the Rings trilogy? I finished book three (The Return of the King) in 2015 but only remembered to put up links to the files last December. They’re all on my “Kayray Reads to You” page. Best wishes to you all!

  3. Christy

    Good luck on the Remodulin. And it’s okay to be a difficult patient–I am too and I’m proud of it. You have to try what you think works best for you, and there is no shame in that. The nurse at my clinic encourages me to stand up for what I want because just because a doctor recommends something, doesn’t mean it’s the best option for me. I’m trying Ventavis again hoping I can capture my good pressures back, but if not the subcutaneous route would be what I chose as well.

    I wish you a lot of luck and will try and follow your progress.

  4. Catharine

    *hugs* Good luck – I hope it’s able to provide some relief!

  5. nibin

    Its an odd thought listening to your recording of Dracula now and just learning about you, even though the recording was made way back in 2005. So much time has passed since then…it makes me wonder about what I was doing back in November of ’05, like a nostalgic feeling. Hope you get better. Best Wishes

  6. Robin

    I was diagnosed with pulmonary hypertension in 2013,
    I also use the cadd 3 pump with Remodulin,
    I haven’t had skin issues, but do get infections at the site,
    so I understand, you will see a real difference in your breathing ,
    as for the walking test, hate it, I’ve haven’t tried putting it in my thigh,
    I use my abs, also I have never t responded to anything on
    line before.

  7. kara

    Hi Robin, Congrats on joining the world of online commenting :)

    I’ve been on Remodulin for over a year now. My main problem is that since starting it I have developed a severe allergy to ALL adhesives. We’ve tried every solution known to man, but the only thing I can do is change my site every day, swapping thighs so that the skin on each thigh gets a day to rest. And I use a TON of Sarna lotion, which is made of camphor and menthol and does soothe the itch for a little while. As you can imagine, starting a new site every day is not super fun, and with every re-order of supplies I need to explain very carefully that yes, I really do change my site every day so I need 30 sub-q infusion sets every month — but at least I don’t need to worry about making a site last for a long time, and the pain isn’t bad after that area of the body gets used to the meds.

    I have been able to cut back on my o2 use, and don’t need it if I’m just chilling at home. I need 4 lpm all night and I use my portable if I need to carry in the groceries or walk up a hill or whatever.

    Take care!

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