New to Remodulin Aubq 2018-07-25T14:21:23+00:00

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  • Karla
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    Post count: 2
    #8814 |

    HI. I am new to Remodulin SubQ. Started April 6, 2018. Having severe site pain when moving site as I was told. I am so nauseated. The medicine is stil being titrated every 3 days and should be at my level in a month or so. Is anyone else nauseated with the medication. It is just terrible. I am taking Zofran as well.
    Just looking for any tips. I have been on just about every PH medicine. Just hoping that there is a light at the end of the tunnel!. I just want to start feeling good again. Any tips about Remodulin would be great.
    Thanks

  • Leigh Squiers
    Participant
    Post count: 5

    My partner is also on Remodulin, started at the end of November. He is 59 years old and is also on Letairis and adempis which the doctor had him on first. His case is severe and he has extreme right heart failure as a result of his cetph PAH. Heart transplant is not an option in his case. The doctor stated and that this was the “last resort” to get things under control. The caustic nature of remodulin was laid out to us in the beginning. Feels like a large (really large) bee sting at the CV site. Also, depending on the site location, as the medication slowly seeps into your system, pain will let you know where it is flowing to. Nausea & stomach upset are a part of it but the worst by far are the migraine headaches which, as ypou tritrate up become acute at each titration. As for the nausea, Promethethazine Hydrochloride 25mg tabs, rantadine and a Claritan – like allergy pill were proactively prescribed to deal with the site pain and nausea in concert together. My man is very sick and in order to titrate up and survive the symptoms, the was hospitalized twice in the last five months for a month long each time to get him to be able to deal with the side effects. CVS specialty Pharmacy also made up a compound to apply around the site: ketrophen 10%, licaine 5%, gabapentin 6%, ketamine 5%, amitriptyline 2%, cloNIDine .2% PLO gel. He doesn’t use it much as it is sticky on the skin but it might be ok for you. For the headaches: Topiramate (Topamax) is helping him but we are getting his dosage beefed up from 50% because it isn’t helping enough. Word to the wise: if some meds are NOT working, by all means let your doctor know. Doctors usually start you out on a very low dose and only increase when you complain. Especially in light of the opiate crisis. Our ordeal with pain management is ongoing. If the is a palliative care specialist in your area, see them! Their initiative is to help their patients deal with pain & symptoms of chronic illness. We just visited one for the 1st time the other day. Beats the hell out of a pain management facility who will assume your looking to exploit whatever they prescribe.

  • Leigh Squiers
    Participant
    Post count: 5

    Oh yeah, try ice packs or heat compresses. Either, or or alternate.

  • Karla
    Participant
    Post count: 2

    Thanks so much! Also how do you cover your site while showering? I’m still new to all of this. I just hate the pain!

    • Leigh Squiers
      Participant
      Post count: 5

      Our doctor set up remodulin delivery with CVS Specialty Care. They not only send the meds but all the supplies that go with it and send a nurse to your home to teach you all about it & monitor your progress. They have site covers and Hy Tape to go around it to keep water out + a shower bag to protect your pump from water. I don’t know what your insurance situation is but the discussion should be had with your doctor. Let me know how it goes, my man is covered by medicare. Good luck!

  • Alice Yount
    Participant
    Post count: 2

    I also have a specialty pharmacy that helps with all my supplies. I have Acreedo and they are wonderful. Just this morning the pharmacist from Acreedo called me and made sure that I wanted the Remodulin diluent instead of the more generic brand. They are there to help take care of all my needs. I know that it is sometimes quite the process to get on board with a specialty pharmacy but for me it was a huge blessing as they taught us how to mix my remodulin and are also there to help with dressing options as I have had tons of issues with not being able to find a dressing that does not bother my skin. I know that we often have to be our own advocates for things but finding a specialty pharmacy that can help might be worth the effort to get one on board..

    As to keeping your dressing area dry while showering, I really like the Hydroseal brand…it works well and comes in quite a few different sizes.

    Hang in there…there are options for you!

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