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@A myPHteam Member perhaps try my husbands approach to how he wears his IV remodulin bag. He wears it like a ninja turtle so that it stays out of the way of his arms and hands
I’ve been on a Remodulin pump since coming out of ICU last August. I had to titrate up at first which was difficult because it caused me quite a bit of pain. Once I got to my peak level though my body adjusted for the most part. I did keep some nerve pain but it wasn’t as bad as during titration. I’ve tried a few different types of bags to carry my pump in. I tried an over the shoulder purse that sat right at my waist but it swung and always got in the way. Then my sister bought me an over the shoulder crossbody bag from Paris that was beautiful and I wore that for several months but then my upper back started hurting immensely. I now am wearing a bag like a fanny pack around my waist. I hate it but at least it saves my upper back. Although since doing this I’ve had two bouts of sciatica so I don’t think this is the solution either. I put a reoccurring appointment on my calendar for every other day to make my cassette so I don’t forget. So far it’s gone well. I’ve been on it for 8 months and my recent echocardiogram shows that my rvsp is down to 28. We are doing a heart catheterization next week to confirm the pressure is low. Then we will start titrating down on Remodulin and then switch over to an inhaler medication. I’m also on Opsynvi and Winrevair.
Remodulin (treprostinil) is a medication used to treat pulmonary arterial hypertension. It can be delivered continuously through a pump, either via a catheter into a vein or through a tiny tube placed just under the skin.
Many people on this therapy have shared that adjusting to life with an infusion pump takes time and Show Full Answer
IV remodilin takes some getting used to... you will have crazy side effects when you are doing what's called titrating. When you first start IV remodulin they start you at a low dose and work their way up slowly because they have to make sure your body can tolerate it. Everyone's dosage will be different depending on how severe case of PAH you have. My husband Bryan was started on the IV Remodulin because he was at the time on a ventilator breathing for him and his doctor had to try to do something to help him so they started him on it and by some miracle the remodulin worked and he was able to be taken off life support and start recovery. Iv remodulin is the one thing tbat takes some getting used to... cause you have to wear this bag around you 24/7 now. My husband likes to wear his bag like a ninja turtle on his back so it's out of the way of his hands
Wow, l Iots of people on the IV pump. Im using the subcutaneous pump. Its pretty easy. The site pain is kinda crazy, though. The side effects are the same as what you all are experiencing.
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