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    • #13905
      Brittany Foster
      Keymaster

      One of our recent members @starr0505 has asked for feedback with something. I have no experience with this, but I’m hoping a few members can help start the discussion.

      Sue recently stated, “Anyone who has any suggestions for site pain relief that is currently on SubQ Remodulin and any suggestions to help keep the site itself in place. There’s a real issue with the site coming out within 10 days. Just as the site pain starts to subside, the site comes out and it’s right back to square one!! This has been going on for a year and a half.”

      Does anyone have advice for our member about keeping the site in place? Any input on how to manage the pain she is experiencing? All feedback will be greatly appreciated!

    • #13955
      Iris Alexander
      Participant

      I’m not on the sub q any more but when I was I communicated with the company that the meds came through (in my case ACCREDO) and they sent me a topical pain solution to rub on that helped a lot and the home nurse who worked as the person who trained me on how to set up my meds suggested affrin nasal spray you just spray it on and rub it this helped with the itching ALOT …I know we are not medical professionals here so you should ask your doctor or nurse about that first

      • #13975
        Lourdes A Rodriguez
        Participant

        I find that nothing helped. Some alternatives were spraying Flonase nasal spray around the site and combining Noxzema with preparation H. The topical pain solution did nothing for me. Sorry to hear that the site comes out every 10 days (make sure you are not lifting anything heavy) you might want to see if you should change to the IV catheter instead.

        • #13977
          Brittany Foster
          Keymaster

          Thank you for the response Lourdes ! Who would have thought that nasal spray would have other uses!? I guess it is an anti inflammatory spray for the nose so it makes sense that it may work on other things !

      • #13992
        Douglas Knuth
        Participant

        Hello Brittany. Sorry to hear that you are having such issues with your sub q sites. I’ve been there at one time 6 years ago. I’ve been on Remodulin Sub Cutaneous for 6 years now, and may be switching to Orenitram soon. But, I think I can help you in dealing with some of your issues. I too go thru Accredo and had the same problem of my site lifting off within a week of insertion. I was issued Plogel to help with the pain and I would gently place some around the site. But I found that the Plogel worked underneath the cathedar and sure enough after a few days to a week off it would come leaving you with a new site and another week or two of intense pain. So here is what I recommend, that you ask Accredo for during your next reorder. Ask for about 11-12 of what is called an IV3000 covering (it goes over the top of the cathedar after you cut a hole in it)and whenever you change your pump and refill a new syringe you will change the IV3000. For me that is every 3 days. I am assuming that you receive alcohol wipes, and skin barrier wipes, I do. When my refilled pump is ready for use, I then shut off the depleted pump, unplug it from the cathedar and then I carefully remove the old IV3000 so as to not lift the cathedar. Then I wipe wide around the cathedar with an alcohol wipe for about 30 seconds to remove any skin oils, etc. Then I wipe the area with the skin barrier wipe which repels moisture and really gives the IV3000 a great sticking surface. (Note: I cut a hole in the middle of the IV3000 that is almost exactly the same size and shape of our cathedar plug in area.) So with a clean area now ready, I pull off the first large backing paper off the IV3000 and when lined up with the cathedar plug in area I place it down removing the remaining backing paper off the IV3000 and smooth it out flat. (This may sound more complicated right now, but believe me once you learn and do this once or twice you will find it well worth doing.) I was told to replace my site every 6 weeks by my doctor and I went from only able to get 1 week before the site came off to going 6 weeks before I literally have to remove the cathedar. I wanted to post you a picture of the IV3000, but I can’t seem to log in with my cell phone to paste it in. I do not use the Plogel anymore as it didn’t give me enough pain relief and loosened the site. I found that ice packs work pretty good along with oral pain medication. I don’t need tape anymore to hold the cathedar in place either. I hope my info helps you and if I can figure out how to paste the picture of my prepared IV3000 I will add it later. I don’t want you suffering with the pain every other week, it’s tough enough every 5-6 weeks restarting a new site. Site pain for me usually fades away between 7-13 days after startup. By the way, I wish I could take credit for the IV3000 hole cutting, but I had to call and speak to a nurse who talked to another nurse and got back with me about it. Nurses are the best! Good luck, hope this helps. [email protected]

        • #14009
          Brittany Foster
          Keymaster

          Douglas
          Thank you so much for you detailed response. The info that you gave to us is awesome and I’m sure others will be thankful for it. I am not on the subq myself. I posted this discussion for another one of our members @starr0505 . I hope she gets this message and that it helps her figure out next steps ! Thank you once again for your awesome feedback for her.

        • #14014
          Sue Starr
          Participant

          Thank you so much Douglas! We just got the IV3000 because it was recommended by a Nurse as well!! So far so good….it has only been a few days but, normally, by now, the site is showing signs of loosening. To imagine a site in place for more than 10 days on the long-end is something that I dream of!!
          Thank you again Douglas!! Great information. I wish you nothing but the best!!

        • #14031
          Lourdes A Rodriguez
          Participant

          I use the IV3000 as well. Once I inject the catheter. I put the skin wipe barrier around it and I take 2 IV3000 and cut them in half and put it around the catheter (my nurse taught me that as well) my site stays on for 6 weeks, but she never recommended that I take the IV3000 off every 3 days or so, which I hate because the site starts to get very itchy and irritated and I want to yank the catheter out….which of course you know one will dread afterwards. But I will try your way Doug and change the IV3000 more often and see if helps with the itchiness and maybe allows me to keep catheter on longer (8 – 10 weeks.) Maybe all that scratching that I do around it may be aggravating the catheter to pop out. Now if we could only find a way to rid ourselves of the site pain..that would be a huge blessing. (Mine can be anywhere from 7 to 10 days!!)

    • #14054
      Rosa
      Participant

      I was diagnosed with PAH earlier this year and have been on subq since. I tend to develop rash underneath and around the site which ended up lifted the catheter tape and had to change site and go through the 10 day pain all over again as well. I was told the rash was due to the allergy reaction to the iV3000 and the skin barrier wipe. I now cover my site with just graze and paper tape. I also use paper tape around the catheter tape to keep it in place as long as possible. The rash is less severe. Anyone has the same problem or suggestions on relieving
      rash being developed? I use lidocaine patch and meds for the pain.

      • #14055
        Brittany Foster
        Keymaster

        Rosa,
        I have heard of others getting some type of rash around their site. If you want, I can ask this question in a new forum topic for you to see if others have similar experiences and what they have been doing for their rash. I am sorry that it is causing you discomfort and I hate the fact that the medications that help us can have such terrible side effects ! I will post this question for you in our “side effects and symptoms” forums where you found this topic.

      • #14061
        Kathleen Sheffer
        Participant

        Hi Rosa @rfung88!
        My skin is very sensitive so I had a lot of issues with reactions to the Tegaderm bandages covering my broviac site when I was on Remodulin (not subcutaneous). The bandage that worked best for me was a Primapore bandage I got from Accredo. Didn’t bother my skin as much! I also stopped using alcohol on the site and switched to just betadine swabs and saline wipes. I used a very strong fabric tape – Hypafix brand – for my “safety loop” so that if the catheter gets pulled on the tape takes the brunt of it. (I’ll repeat this in the Side Effects and Symptoms forum as well – thanks @brittany-foster).

    • #14869
      Steve Stiffelman
      Participant

      Hello all,

      I was wondering if anyone has suggestions for where to place the sub q that results in less pain. I seem to stay around my stomach because I have lost so much weight I don’t have other fatty areas. I also had problems with the plastic pieces sticking together. There were some great suggestions for helping with this.

      • #14872
        Brittany Foster
        Keymaster

        Hi Steve,
        I don’t have experience with subq medication for PH , but I have had to give myself subq injections of blood thinners before and as a smaller person it was really painful in the leg and seemed to hurt for a longer amount of time. It’s always best to go where you have the most fat on the body so it doesn’t hurt as much. For me, the stomach is always the best bet! I guess it would depend on how your body reacts to it and what area is most sensitive.

    • #14983
      Rosa
      Participant

      I have been experiencing the Remodulin back flowing / leaking from the tubing causing burning pain in the site area. I’ve switched sites four times the past two months and the problem continues. I am considering switching to IV. Does anyone have similar problem? I also appreciate any feedback on administering Remodulin through IV.

      • #14984
        Kathleen Sheffer
        Participant

        I’m sorry you’re having this issue, Rosa. Sounds so frustrating! I was on continuous IV medication through a central line for 16 years. Sub Q wasn’t an option when I first started, but it never appealed to me, mainly because of the site pain. I can answer questions you have about IV Remodulin – it made my life easier in a lot of ways.

    • #14994
      Sue Starr
      Participant

      The site pain from the subq remodulin was just unbearable so, my friend, that I am caregiver for, just last week transitioned from subq remodulin to Orenitram. 3 days in ICU and on day 4 (Thanksgiving) was home from the hospital and pump-free!! So, far issues are headache and nausea. But, when asked, “what would you prefer, pump/site pain or headache and nausea?” The answer is “headache and nausea”. Breathing seems better than it was on remodulin. It has not been a full week of pump-free living but, we are hoping for the best!!

      • #15039
        Brittany Foster
        Keymaster

        Hi Sue,
        I know what you mean by having to choose between the lesser of two evils. The headaches seem like the lesser of the two because there are some ways that the headaches can be controlled whereas the other alternative seems like it is not in her control. Are they being helped for the headaches and these symptoms or doing anything to make them less severe? Hope things improve each day slowly but surely !

    • #14996
      Randolph Reynolds
      Participant

      These comments about site pain are very timely since I have had several episodes where the pain becomes so bad that I changed sites. What I have done is to take a pain med Gabapentin proscribed by my doctor. It helps if I stay ahead of the pain but sometimes that isn’t possible. I had my first case of a catheter coming out this morning. I had to put in a new site. Curiously I have less trouble on the right side of my stomach than the left. So I do think finding an area that tolerates the Remodulin better is possible. I was taught to use the IV3000 to help secure the catheter but sometimes I cut the opening too much and the site can get loose. So far I am still learning all the problems that have been mentioned by SubQ infusion. I am quite active on some days and if the site pain is bad it ruins my concentration. As to the ointment that I got from Accredo it doesn’t work for me.

      We all seem to have similar problems but react to the SubQ methodology differently. Thanks all for your inputs.

      • #15040
        Brittany Foster
        Keymaster

        Hi Randolph,
        any amount of high pain effects my concentration and focus too and I’m so sorry you have to go through that. Some days are easier to stay on top of the pain than others. Are you on gabapentin every day or is this something you take for when the pain gets bad? I used to be on it every day for my nerve pain in my stomach but it made me feel very groggy. Do you get side effects from that medication? I’m sure the side effects from the med aren’t as bad as the pain though !

      • #15041
        Sue Starr
        Participant

        It seems as though the nausea and headaches have subsided!! Hopefully, it was just a temporary thing while her system got used to the new med. Fingers are crossed that things stay as they are right now for a while….Pain Free!!

        • #15042
          Brittany Foster
          Keymaster

          Sue,
          I’m hoping for that too! Sometimes I have the same reaction to new medications as my body is adjusting to it. It can be a shock to the system at first and then once things start to level out it gets a lot better and you will hopefully see the continued improvements you’re looking for ! 🙂

      • #15607
        Donna Dee Tubbs
        Participant

        Hello Brittany,
        I have been reading your blog since I started on Remodulin 9 months ago. I use Gabapentin for the site pain, but only at night. I was asked by my team to try a new product “EVOLVE” it’s THC. You need a Rx to order… I use it sparingly around the site 3 or 4 times daily. I have also started preparing a new site. Just applying 1 drop and rubbing it in daily. It’s amazing how well it works.
        I have also tried that PLO Gel is too sticky.

        • #15610
          Brittany Foster
          Keymaster

          Hi Donna,
          Thank you so much for reading the blogs. I hope to be back to writing the column posts by February. I had to take a break because I have been in the hospital almost all of January. Finally home and building some strength back. I’m glad you found something that was helpful for you. Is it THC infused oil? I have used THC infused creams made from a weed plant and it’s amazing how well it helps aching joints and topical pain. I will have to ask the doctors about that particular brand ! Thank you!

    • #15049
      Carol Volckmann
      Participant

      Hi Brittany,
      Just saw your post and thought I would add some thoughts that may help. I have PAH and have been on subq Remodulin for over 6 years. The only reason I do not rip this out of my tummy and throw it is far as I can is because IT WORKS. 1. Site pain is terrible but I have been able to manage it to the degree I am not disabled. Keeping the site in I need to keep it as dry as possible – any moisture gets under, the site does come out. I sue Aquacel Foam (Ref #420680) 4×4″ waterproof adhesive (around the edges). The Aquacel Foam is actually specified as a “wound” bandage. As a wound bandage Accredo at first would not supply it – until my doctor looked how much better my site is (not angry and red all the time). Accredo now does supply the Aquacel Foam (on the open market they are very expensive $10-20.00 each). I use them 24 hours a day – I shower with it on (no more taping up, water seeping in, skin raw from un-taping. Each one can last 3-4 days I look for any separation and change it before getting into the shower.It is a game changer as to being comfortable all day and it keeps the site dry and in place. 2. Site changes – PLO Gel does not seem to work at all for me. I first remove the old site, take a nice long shower or bath and enjoy. One hour or 1.5 hours before I put in the new site, I take some pain meds, clean the site, use alcohol wipes let that dry then take a Salonpas Lidocaine 4% (get over the counter) cut it in half smear Lidocaine 5% all over that (I get from Accredo) – be careful not to use your fingers as it will numb them – I cover my fingers with plastic wrap, put that over the site for the 1-1.5 hours. Wipe it all up with gauze pads, clean with alcohol wipes, let that dry then wipe the area with 2 skin barrier wipes, let it dry then insert (if I do it right, I cannot even feel it go in), then I tape the edges down then put the tubing on making sure I can open and close the tubing easily. 3. Pain from site: for the next week or two I will take as needed pain meds along with an antihistamine and make sure the pain does not get ahead of me. Ice packs also help, not lifting heavy items not exercising too vigorously. Exercise is really important for PAH or PH and I use the treadmill and some weight bearing for my arms and legs. I do not do much for the first week of a site change. Then start again slowly and work up until I have to change the site again. I hope this helps someone. Thank you for listening.
      Carol

      • #15050
        Brittany Foster
        Keymaster

        Carol,
        I can’t thank you enough for your great response to this topic. I don’t have this specific pain but I know there are so many on this forum that could benefit from the advice. You are certainly a wealth of knowledge. It helps so much to hear the tips and tricks from others. Hope you are doing as well as possible ! I’m glad you are managing the pain and staying ahead of things as best you can.

    • #15053
      Carol Volckmann
      Participant

      Brittany,
      Thank you so much for all you do for so many! You are a treasure! I forgot to mention, Medtronics will be coming out with a new IMPLANTABLE pump – they will not be implanting the old ones (they work, everyone who has been in the trials loves them) – the new ones will be easier to program and will take more remodulin but will not be available until late 2019. These really will be a game changer – no more site pain!!!! I have been waiting for this for 6 years and cannot wait!
      Healthy and happy Holidays – and hang in there everyone.
      Carol

      • #15054
        Brittany Foster
        Keymaster

        Carol,
        My aunt is actually a medtronic rep and helps to program the devices (not the pump, but she has programmed pacemakers and spinal implants). I have seen the benefits of other medtronic products including my own pacemaker. I’m so happy for those that will be able to receive this and it sure helps people hold onto some type of hope!!!! Sometimes hope is all we need to get through each day.

    • #15055
      Rosa
      Participant

      THanks Carol. That’s a great advise. I wished I learned that sooner as I gave up on subq and getting ready to switch to IV Remodulin. So glad to hear that subq works for others. I didn’t think of taking a nice longer shower before starting a new site! Thanks again for sharing.

    • #15056
      Brittany Foster
      Keymaster

      I love all the great feedback others can bring to our members and this community! Even if we don’t necessarily deal with this ourselves (like me), it’s still good to know for future references and great to see the help that everyone has to offer. Thank you all for the continued contributions to these forums. You are the voices of PH and what you all say matters!

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