This topic contains 23 replies, has 8 voices, and was last updated by  Brittany Foster 4 weeks ago.

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  • #19039
     Randolph Reynolds 
    Participant

    I have been on Remodulin for a year but recently my site pain has become almost unbearable. I have changed sites on an average of once every four days from one side of my stomach to the other. Is there anyone with similar site pain problems or does someone know of some site that is less likely to have a pain problem induced by the Remodulin?

    Thanks
    Randy

  • #19062
     Jen Cueva 
    Participant

    Hi Randy, I am not on SubQ Remodulin, but I know many who are. I am sorry to hear that you are experiencing so much site pain. I have heard of many requiring to change sites quite often as well. I know some who find certain areas are not as painful as others. I also know some who use a PLO gel that numbs the area some and that has been helpful for them. I wish I was more helpful.

    Also, a cool pack may offer some relief.

    I hope that you find some relief and a better site soon. Have you contacted your PH team or Speciality Pharmacy? I know the specialty pharmacy nurses often know tricks and tips. Please keep us posted.

    • #19088
       Douglas Knuth 
      Participant

      Hello Randolph,
      I have been on Remodulin subq for 7 years now. I was just reading thru your post and replies to others. I am noticing a couple of things that I do differently. First, I understand the pain you are referring to. It is no fun for sure, the drug itself causes the pain & inflammation you are having. I don’t know why your Doctor/Pharmacy team hasn’t informed you, but you don’t want to change your site every 4 days to start with. You are actually just recreating more pain to deal with. When a new site is started, we have to expect to have varying degrees of pain for the first 7-10 days usually. So, now you have started a new site in a spot that isn’t being rubbed on by say your pants/belt. (I generally use my middle to upper belly). There usually (for me anyway) is a pain grace period ranging from 4 hours to 12 hours before the pain starts. I order up from my specialty pharmacy what is called an IV3000 coverlet for my cathedar and cut a hole in the middle of it for the tubing to be able to plug in and out. It helps hold the cathedar in place & protect from snags & moisture so it will stay on for up to 6 weeks. I have posted pictures of the IV3000 in another posting to another subq patient and I can’t seem to upload the picture to this post at the moment. Ok, now you have placed your site and have started your pump up after bleeding the air from the tubing with Remodulin, and filling the cathedar itself. So the pain at some point has started, and you need to stick with this site now for the next 7-10 days! I have used several products and ways to cope with the pain during this time. I was offered what is called PLO gel from the spec.pharmacy, but it always seemed to get under the cathedar and it would come off within 1-2 weeks. And the numbing properties of the gel didn’t seem to help anyway for me. My next trick was to take an ice pack either wrapped in a cloth or directly over the area which does feel good but you kind have to hold it there with your hand. I’d give that a C+ grade. Then some years later I tried using Solarcaine for sunburns, it has a cooling effect and has pain killer in it. Works well, I give it a B+ for a grade. Walgreens has a Pain Relief cream with 4% Lidocaine in it that also works well and doesn’t seem to lift the cathedar, same grade for that. I am now, (with my doctors approval) using CBD salve between 500mg & 2500mg in strength and it is working very well. It is cutting the pain in half or more and the pain seems to be leaving sooner than 7 days. I used to get that big red/orange inflammation area the size of a orange or grapefruit at times, but now the inflammation is much less in size as well. I am fortunate that I have a close relative that is in the business of producing CBD products as they are pricey and not covered by insurance. Whatever of these “tricks” you use will help you to deal with the nasty pain of subq Remo. But don’t change your site until either the cathedar starts to lift off or if you notice pain returning and or a hard spot developing around it. My doc is pretty liberal with me, he wants me to change every 6 weeks, but if I were to go 7 I doubt he would be upset. I think that is pretty much the best I can help you at this time. Hope this helps you deal with Remodulin sub q. Best to you.

    • #19141
       Mary R. Thoen 
      Participant

      New site pain is common for Sub Q using Remodulin and it lasts 4 to 8 days. DON’T CHANGE THE SITE….. live thru the pain and it will lessen to no pain and the site should be good for 30 to 40 days! The old site will “tell you” when it is time to start a new site after a month +. The pain is from the strong Remodulin entering a new area of the muscle/the new area. It takes 4 to 8 days to adjust to this new invasion of the area before the pain disappears. For me it was 8 to 10 days….after a year it is down to 4 or 5 days. I plan “sit down” jobs for those days.

      PLO does help lessen the pain but I am now using CBD cream that does much more pain management. There are different strengths of CDB creams…the cheaper ones do not work!

      • #19148
         Brittany Foster 
        Keymaster

        Thank you so much for the advice, Mary ! I know it is appreciated. Where did you learn about the CBD cream? I know some people who make them and my massage therapist actually uses CBD and THC infused topical creams and they really help a lot , especially with that deep muscle type pain that is hard for any pain medication to control. I’m glad you found something that helps ease some of the discomfort !

      • #19156
         Jen Cueva 
        Participant

        Mary, thanks for your tips. I am not on SubQ Remodulin so I was only offering Randy support from PHriends. I am glad that you explained it better from one who is eating with it.I know that site pain is no joke. I applaud y’all who tolerate it every day.

        Great tip on CBD cream as I know many are using it to help in many ways. I am sure Randy is grateful for all of the tips.

  • #19065
     Randolph Reynolds 
    Participant

    Jen
    I appreciate your reply. I do attempt to use all your suggestions. I find that when I change pumps and connecting new tubing this causes an increase in pain. Right now I have found a place that is less painful but the pain reaLLY began when I was instructed to work up to higher flow rates. It starts out being annoying and then in a few days, depending upon my activity it gets worse. Like those others on SubQ Remodulin it is a difficult problem. I have mentioned it the PH team several times. I hope there is a work around on this issue.

    Thanks

    • #19070
       Brittany Foster 
      Keymaster

      Hi Randolph,
      I am sorry that the pain from your site seems so hard to manage right now. I personally haven’t dealt with this because I don’t use the typical medications as other PH’ers
      But I can express sympathy for pain and the difficulty of managing it. I always try to be as honest as possible with my doctors and am pretty clear about how much pain i can physically “tolerate”. For all pain that is added pain and more than what my normal is, I am prescribed pain medications (I know it is really hard to get prescriptions when you need them sometimes). But I would set boundaries of how much discomfort you are allowing yourself to feel. You don’t want to be in any more pain than necessary. Pain puts a strain on our bodies too
      I hope you can start to get it under control. That must be so hard and frustrating.

    • #19113
       Jen Cueva 
      Participant

      Randy, I hope that you can find some tips from the others who have been dealing with the SubQ Remo for years! I applaud all of you as that site pain is no joke. I hear such painful stories from those on it. I’m sorry that y’all deal with that ongoing pain.

      I had one PHriend who had her PH team switch her to IV Remo as she could not tolerate the pain. You have been offered some great tips. Please let us know if you find something to help offer you more relief.

      From my knowledge, you would apply the PLO gel around the area that you are going to use for the new site. I may be wrong, but this is how I have understood the process.

  • #19078
     Joanne Sperando 
    Participant

    Hi Randy, I’ve been on subQ Remodulin for 21 years. I was in the clinical trial starting in 1998. The trick with site pain for me and others has been to tough out days 2 through 10. Yes, you’ll swell and have severe site pain, but after day 10 (in my case), the pain starts to lessen, the swelling starts to go down. At the two week mark, my sites are much better and no longer hurt. I can keep the site in anywhere from 4 – 8 weeks and sometimes longer. Changing every 4 days just starts the ‘hell week’ process over and over. During Hell Week, I use the PLO gel (the highest level possible) and ice packs (be careful not to over use). Hope this is helpful.

    • #19082
       Brittany Foster 
      Keymaster

      Thank you so much for sharing your tips Joanne! What is PLO gel if you don’t mind me asking? Is it like a topical pain gel? After my thoracotomy I used lidocaine patches on the area and it helped to relieve some of the pain. Is this something that can also be used for site pain from the medicine? Just curious! The ice sounds like a great tip too! Especially if there is a lot of inflammation happening.

  • #19084
     Carol Volckmann 
    Participant

    Hi Randy, I was on subque for 6 1/2 years – tried different sites (arms, legs etc) tried cold, hot everything and was on Vicodin which was a good drug for me. The last year it got so bad,like you I waz changing my site every few days
    When it got that bad I was convinced the only thing to do was to switch to an IV central line. The docs put me in ICU for 3 days so they could monitor the switch over – once I was up and running I took that subque out and threw it away! Instantly NO PAIN! The line of the IV is 5′ long so you can hang it outside the shower. It does seem daunting to mix up the solution in the cassette which then attached to a pump. It becomes a lot easier after awhile and now I mix up 7 at a time which is good for 14 days as you need to change out the cassette every other day. The special pharmacy will walk you through it. They will tell you you should mix that many ahead for at least 3 months I did not wait that long. Also to water proof up ask for 3×3 or 4×4 Aqua Cel Foam. You can use one for several days and just leave it on. Randy if you need more info don’t hesitate to get in touch. Good luck!
    Carol

    • #19086
       Brittany Foster 
      Keymaster

      Wow, Carol. It seems like you had quite the road with the subq. I am glad that you were able to advocate for something that gives you less pain and that you were able to get medication to help with the pain when you were going through all of that. I can’t even imagine having to do it with just basic pain medications. I have a hard time with pain management from other conditions that I have and anything else that gets added to my pain that I have just really throws me off. But I am really glad that it seems like you are in less pain with this IV method. Your tips about the water proof pads and advocating for yourself as so helpful! you are so valued here 🙂

  • #19087
     Randolph Reynolds 
    Participant

    Joanne and Carol:
    Two different approaches. I have been chasing the site pain all over my mid-section. The pain med tramadol is pretty much useless. I’ll try to get past six days which is the longest I could stand. Right now I have a location that after two days is not hurting as badly. As for IV insertion the doctor I see didn’t want to go for that. All this with being on continuous oxygen has depressed me considerably. I rely on my wife for at home support. Thanks

    • #19097
       Brittany Foster 
      Keymaster

      Randoplh,
      I’m glad to hear that your wife is there for support for you but I’m so sorry to hear that you are dealing with so much pain. I was on tramadol for a bit too and it didn’t help that much with pain. Are you comfortable with having conversations with your medical team about pain management? I know sometimes it can be a hard topic to bring up especially out of fear around addiction and everything if you are thinking about narcotics. I think that with the proper management plan though, you can stay safe and monitored and also managed correctly so you don’t have to suffer so much. It’s so important to find a doctor that acknowledges that and wants you to be as pain free as possible. It’s a hard balance though ! Hang in there and know that you have a whole community of support behind you here.

  • #19090
     Randolph Reynolds 
    Participant

    Joanne,
    I meant to ask you how you have managed to be on Remodulin for 21 years? That is something special.
    Blessings

  • #19107
     Randolph Reynolds 
    Participant

    Douglas,
    Thanks for the details on your process. I have used most of them but my patience with the pain exhausts me after about five days. I’ve decided to hang on to the pain for longer to see if it will abate. Changing pumps for a refill of Remodulin aggravates the site and I have some arthritis in my fingers and I really have to concentrate to get the tubing disconnected from the site. Your comment about CBD salve is something new. I assume that you put it down before the you insert the catheder. I’m not clear on that point. It seems you would have to put the gel down before you inserted the catheder. I may not understand this use of the gel. Do you place it around the IV-3000 covering? I’ll mention this to the Doctor.

    Thanks
    Randy

    • #19108
       Brittany Foster 
      Keymaster

      Glad you are getting good feedback on this post, Randolph. I really hope that you can feel some type of relief. I really feel for your discomfort and have a lot of sympathy for what you are going through. Really great that you are taking this advice to ask your doctors about it further. When using any products or treatment, it is definitely best to get good input from your medical providers. Keep us updated on how things are going and if you notice any improvements ! I’m sure this thread will be of great help to others too.

      • #19119
         Douglas Knuth 
        Participant

        Randolph, I don’t put the CBD on my skin before insertion. That would interfere with the glue sticking to the skin. I prep with alcohol, then with a skin barrier wipe.
        So that you know, there are a couple types of cathedar’s that can be used (that I know of). I use the Silhouette from Smith’s Medical. The needle enters the body from the side and so the inflammation tends to occur off to the side of the cathedar. I trim the IV3000 down to just an 1/8th of an inch larger than the cathedar to allow me to place the cbd right up on the infusion area. I don’t have to use high mg of cbd salve to get results. 500mg-1000mg handles mine pretty darn well. Find some way (ice packs, etc) to get thru at least the first 7 days, the pain will usually start to lessen by that point. There is another cathedar called a “Quik Set”, that one is inserted straight down into your body, (no pain inserting it either). But all you have to do to change the tubing is a simple twist without pressing in (like the Silhouette) and the tubing comes off. A little easier than the Silhouette cathedar in that regard. It does however sit up off the body a little higher and that makes it a bit easier to snag on something.
        I have also been told and have tried what is called a “dry shot”. That is where the day before you are going to start a new site you insert a new cathedar and cap it off until the next day when you start actually using it. It’s supposed to help cut down on the pain somewhat.
        Again, I hope you find some combination to help you get thru the first 7-10 days as once the pain subsides you will have 4-5 weeks of being pain free. Good luck.

  • #19112
     Colleen Steele 
    Keymaster

    I just want to jump in and thank everyone for responding to Randy. It’s so great to witnessing the guidance that we give each other. I don’t have experience with SubQ Remodulin or I would have added some advice. I’m more familiar with Carol’s experience and from that I can sympathize with the pain and discomfort. My son had a central line for IV Flolan for 5 years and developed allergies that would break severely break his skin down. He can’t use Tegaderm at ALL, that includes the wipes they give you to clean before a surgery.

    He can use IV 3000 dressings for a brief time, such as for a procedure, but if it’s long term we use Primapore. Hospitals don’t usually carry that product so we would always have to bring it with us, and sometimes they wouldn’t let him use it because it isn’t transparent.

    I don’t know that any of this information would help Randy though.

  • #19117
     Carol Volckmann 
    Participant

    Hi Colleen, I discovered Aqua Cel Foam dressings when I was on subQ. Everything the special pharmacy gave me for my site and to water proofing tore up my skin – it was awful! It seemed I was allergic to all their taping. The Aqua Cel Foam is totally water proof and the adhesive part is so gentle on my skin I could wear it 24/7 for several days before I needed to change it. It helped protect the site. After the SubQ got so painful I could not even walk I had the central IV line put it. They gave me the IV3000 which also did a number on my skin. I have gone back to using just the bio patch and the Aqua Cel Foam to cover for protection keeping the site sterile and water proof. The Aqua Cel Foam comes in 3×3, 4×4 and up – I use the 3×3. I do receive this from the special pharm as they now do carry it after my doctor saw how well it works. I hope this might help your son and anyone else out there who is having similar issues. The very best to you and your courage!
    Carol

    • #19129
       Brittany Foster 
      Keymaster

      Carol,
      Thank you so much for that. I actually recently heard of this foam. the hospital gave me some of it to tape down a dressing that I had after my last surgery. It was way more comfortable and less irritating than the tape. The tape and the plastic covers really tear up my skin. Even the EKG padded leads are just awful for me. I end up having burn marks from where the leads have been because they just rip off my skin layer. So when I lay in the sun I usually have a few redder square boxes on my tan! Looks great in a strapless dress (hahaha!)

  • #19151
     Randolph Reynolds 
    Participant

    Mary,
    I think what you describe is just what I need to do. I am on my sixth day for this site but I have had to use ice to help get to sleep. My question is just how do you apply the CBD? Is it around the IV3000 covering or do you use that at all? I am experimenting with a very low dose of CBD on the site but I see little improvement.

    Thanks
    Randy

    • #19163
       Brittany Foster 
      Keymaster

      Hi Randy,
      I hope you are able to experiment with a dose that is better helpful for you with the CBD
      I don’t know too much about it but I’m sure just from reading many of the comments that there are others that are way more knowledgeable than I am! Great to see all the support here.

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