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    • #26986
      Jennifer Beaty
      Participant

      I’m well aware of the site pain, redness, swelling, and itching when I change sites. However, the itching almost drives me to the point of madness. Then my site starts bleeding and I have to change it again. So I am never without the pain of changing sites. And I don’t understand why my site is bleeding. Does anyone else have this problem?

      My previous site bleeds and becomes very hard and itches. Is this common also?

      I have to admit, I’m having a very difficult time dealing with this. I’ve mentioned it to my doctor, but I don’t think he realizes just how bad it is. (We’ve been having teleconference appointments due to the pandemic.)

      Thank you all for letting me vent.

      Jennifer

    • #26991
      Jen Cueva
      Moderator

      Hi @jenniferbeaty, my heart aches for you as you describe the itching and swelling. I have not been on Subq, but I do know many PHriends who have been through the years. Is there a chance that you can be allergic to the tape or dressing that you are using? I would suggest trying another type and see if this helps.

      This what you are describing sounds horrible, and I am sorry that your doctor is not listening to your concerns. These are all valid concerns. Did he offer any solutions or reasons? I do know the first few days, most suffer site pain, but this itching, redness, and swelling sound like there may be other reasons. Have you used alternating warm and cold packs to help with the swelling?

      Again, I am sorry that you are dealing with this. I would also suggest calling the PH nurse and telling her this is not improving and you need answers and some help from them. It can be frustrating when doing telemedicine, as they do not see the whole picture. Did you show them the site when it gets this bad?

      I am sending you hugs and positive vibes from Texas. Please keep us posted.

      • This reply was modified 1 month, 3 weeks ago by Jen Cueva.
    • #26999
      Colleen Steele
      Keymaster

      @jenniferbeaty I’m sorry that I don’t have experience with SubQ but several of our members do and I hope they will respond. My son was on IV Flolan and had a central line. He developed BIG allergies to several of the dressings and cleaning supplies. We reached out to Accredo (don’t know if you use them) and a specialty nurse had other products for us to try. Through trial and error we found some that didn’t irritate his skin as severely. I don’t know it this might be an option for SubQ and if it’s an allergy you might have developed. Just a thought.

    • #27003
      Jennifer Beaty
      Participant

      @jenc and @colleensteele, thank you both for responding. I usually have a pretty high threshold for pain; but when it’s 24/7 it can drive a person insane. LOL. I showed my site to my friend who is an oncology R.N. She said the same thing. that it looks like an allergic reaction. So, I spoke to an R.N at Accredo. I switched dressings; but I think it made it worse. So I’ll have to try another if they have one. My main concern is why the site would suddenly start bleeding. I plan to address that with the nurse next time I speak to them.

      Again, thank you both so much for your concern and show of support!

      Jennifer

    • #27009
      Jen Cueva
      Moderator

      Oh, I am with you @jenniferbeaty! I have also been told that my pain threshold is high. But living with it 24/7 will certainly drive anyone insane. Plus, that should not be acceptable. I am hopeful that you can have Accredo send out another type of dressing. I wish that I could remember the one that many use. If I find it again, I will let you know.

      Is there a chance that the Accredo nurse can come to look at it? The bleeding is a concern, too. I hope that you will find the best solution for you to help make this subq life a bit better for you. This breaks my heart, knowing that you are suffering. I can see how this would be exhausting and frustrating, too, for you.

    • #27010
      Carol Volckmann
      Participant

      Hi Jennifer, I was on Sub-Q for 13 years and yes site pain and some redness seems normal. BUT bleeding, itching etc is NOT normal. I agree with Jen and Colleen, it sounds like an allergic reaction. I would reach out to Accredo again for another nurse. I had a terrible reaction to all their taping and transderm for water proofing – it all tore my skin up and terrible rashes
      I found online Aqua Cel Foam and which is a wound dressing and totally waterproof. When my doctor saw the difference it made he made sure Accredo would carry it. I used the 4″×4″ and could leave it on all the time – would change it about every 4th day or if I saw an edge begin to lift up. I could just walk into a shower – I also went swimming with it on. It comes off without difficulty and my site stayed dry. Some folks at Accredo still do not realize that Aqua Cel Foam is in their product list, you have to let them know so they will search for it. It was so good that I would leave it on to keep my site protected. After 13 years the site pain got unmanageable to the point I could no longer handle the pain and now have an IV Hickman line and still use the Aqua Cel Foam to cover that. No pain though a bit combersome handling all the mixing of the same meds diluted with sterile mixtures. My heart goes out to you and I hope you will be able to get on the right stuff soon. I probably should not say this, but, I don’t think much of your Pulmonologist!
      Keeping you in my thoughts and prayers.

    • #27012
      Jen Cueva
      Moderator

      Thank you so much, @cdvol3gmail-com. I know that @jenniferbeaty will appreciate that also. I also wanted to tell you, Jennifer, that the one that I was going to mention was the IV 3000. Another PHriend likes one called Biatain silicone lite. I have never seen or heard of that one.

      My PHriend, Cathy, said to remind you of the FB Sub Q Remodulin Support Group.

      I tend to agree with you, @cdvol3gmail-com, I had the same thoughts. I am hoping and praying that you get relief soon, @jenniferbeaty.

    • #27019
      Colleen Steele
      Keymaster

      @jennifer-beaty another thing you might want to pay attention to is the ingredients in things that you are using. For example, we figured out that my son is VERY allergic to tegaderm and chlorhexidine. We had to search for products that didn’t contain either. Accredo introduced us to Primapore dressing. That worked best for him. I’m so sorry you are going through this.

    • #27024
      Jennifer Beaty
      Participant

      @cdvol3gmail-com, thanks for the info. I started with the IV3000, switched to the Tegaderm. I might have to switch to something else. I’ve been noticing itching from the hydro seal. I can live with that. A little lotion and it goes away. But the actual infusion site itches. Which I don’t think I made very clear to my doctor during our last visit. It has gotten worse since then. So I definitely have it on my list of things to discuss. I’ve been having video appointments since this Covid stuff. But I’m actually going to show him the site during my next meeting.

      Thank you all so much for your input. I think a good honest conversation (and show and tell) with my doctor will help. He really is a great doctor.

    • #27025
      Carol Volckmann
      Participant

      Jennifer, I am relieved to hear you really like your doctor and I think you are right, you need to show him your site. Like Colleen’s son, I am also very allergic to tegaderm dressing as well as the taping. Try the Aqua Cel Foam that is the only dressing I can use. If your site is bleeding and is red and swollen, you may have an infection – please make sure you check that out – that really concerns me
      Please take care anf I hope you will het this under control and your meds will start making you feel better!

    • #27026
      Jennifer Beaty
      Participant

      @cdvol3gmail-com, @jenc, and @colleensteele, thank you all SO much for the information. I’ve written it all down and will keep trying things until I find one that works! And I’ll check out the FB support group.

      Thanks again.

    • #27027
      Jennifer Beaty
      Participant

      @cdvol3gmail-com, @jenc, and @colleensteele, thank you all SO much for the information. I’ve written it all down and will keep trying things until I find one that works! And I’ll check out the FB support group.

      Thanks again.

    • #27028
      Darla McCollim
      Participant

      I was an oncology nurse for many years. Wound care nurses have an amazing amount of access to supplies. If your hospital allows outpatient consults (the usually do) then that’s your best best for something you are not reacting to. Ice pack is your best friend. If you are wanting to itch, it might help and lessen the need to reaches.

    • #27031
      V.R. Peterson
      Participant

      My son had that reaction when he was on Remodulin SQ. He was allergic to the medication itself, not the dressing. His skin would bubble up, lifting the needle out, so he had to change sites at least every week. Some doctors recommend topical Benadryl in such situations, but it didn’t help my son. He couldn’t take the oral Benadryl because his job as a butcher made it imperative that he not take anything that made him drowsy. I’d definitely ask the nurse from the specialty pharmacy to look at the reaction you’re having, so you can determine if it’s a reaction to the medication or the dressing. Once you know where the reaction is coming from, you’ll be able to decide on a plan of action that might help.

    • #27048
      Colleen Steele
      Keymaster

      @jennifer-beaty my son found Tegaderm much harsher on his skin than the IV3000. The IV3000 still gave him issues, it was better for short term purposes. The Primapore was the best for him but the only issue is that you can’t see through it. Hospitals were hesitant to use it for that reason.

      Do you have to use a biopatch for SubQ? That was another product he was very allergic to. We finally found one that didn’t give him issue but I can’t remember what it was called.

      I hope you can figure out what exactly it is you are reacting to and find a better option to use. Unfortunately, if you have sensitive skin, no matter what you use you will probably still experience irritation…but right now your reaction sounds severe. I hope you get some relief soon!

    • #27049
      Colleen Steele
      Keymaster

      @cdvol3gmail-com you bring up an extremely important point and I should have thought about that first when I commented to @jennifer-beaty. Especially if it’s bleeding it needs to be looked at, maybe even swabbed, to make sure Jennifer hasn’t developed an infection.

    • #27053
      Douglas Knuth
      Participant

      Hello Jennifer Beaty,
      I’ve been on sub cut. Remodulin for 8 years now (short 4 months while trying a different drug). I believe I can help you with your pain redness, hard spots, bleeding, etc. I have endured all of them myself until I started using CBD Salve and paid attention to when the hard spots, itching, dark red/purple spots around the site occurred for me.
      First of all, cleanliness is imperative to site longevity. I know about the itching, but resist scratching as much as possible. For me, I don’t get itchy until it’s about time to change the site location. How long are you leaving your sites in?
      I clean the area of my new site with an alcohol pad, then with a skin barrier pad and only then do I insert a cathedar. I then apply an IV3000 covering over the cathedar. (I can help you in cutting the IV3000 if you need or want my help.) Once I have started up the new site, I then apply a fingertip amount of CBD salve in the skin area where the drug is going to going. I apply it twice a day and for me…it has ended the pain and orange sized area of inflammation that you get for the first 7-12 days normally.
      Now I am going to assume at some point, (probably 4-6 weeks of cathedar use) you will notice the itching, the hard spot, and sometimes I would get a deep red/purple area around the whole cathedar site. Also, sometimes I could get blood underneath the cathedar. These are all indicators to me that for whatever reason, the time has come to start a new site elsewhere. Don’t waste time, just start a new site. But get yourself some 500mg (minimum dosage) CBD Salve, not oil. I have an immediate family member who sells their CBD products that I use. If you wish I can put you in touch with them or you can find your own supplier. But either way, I highly recommend using CBD salve at your site. I hope this information helps you out.

    • #27057
      Jen Cueva
      Moderator

      Hi @jenniferbeaty, thankful to hear that you do like your doctor and plan to bring this up soon with him. I am hopeful that some of the tips from our amazing members will be helpful for you. I cannot imagine this subq journey without any help or people knowing about it. I always say that the ones on subq deal with so much pain. I hope and pray that soon this will be better for you.

      When is that appointment, @jenniferbeaty?

      Just know that we are here and care what happens with you. I wish that I could offer more, but I have no experience with subq except hearing from my PHriends. Thanks to all of our members who stepped up and offered some tips. Y’all are all amazing!

    • #27060
      Jennifer Beaty
      Participant

      @jenc, thanks for all the prayers and words of encouragement. My next appointment is 9/17. Sounds a long way off. However, it will be time to change my site. Sooo, he can see first hand what I go through. I have received so much support and encouragement.

      Thank you all so very much!

    • #27061
      Jen Cueva
      Moderator

      I am grateful that your appointment is in a few weeks, @jenniferbeaty. If it becomes too painful, call and have the Accredo nurse come out or something. I am happy that our members could help offer you some tips.

      Take care and keep us posted.

    • #27063
      Jennifer Beaty
      Participant

      @douglas-knuth, I had never thought of CBD salve. Thanks for the idea. I’m very careful about the infusion site. I always wash it with antibacterial soap and water, dry the site, then use an alcohol prep pad before inserting the catheter. Which by the way is an entirely different rant. Why can’t they just add a tiny little tab to hold down so when you pull the plastic casing away, the stupid thing stays in place? But I digress. I try to go about 5 weeks before changing my site. You mentioned something interesting. So it’s not unusual for the site to “seep” blood? I just immediately changed my site when it happened. I assumed the site was bleeding because it was all underneath the Tegaderm dressing and pushing the cath out of my skin. So that’s just an indication that it’s time to change sites and nothing more?

      Thanks! I’ll keep the CBD salve in mind.

    • #27069
      Douglas Knuth
      Participant

      Jennifer Beaty,
      The seeping of blood at the site may pertain more to me than you as I am on a blood thinner. Perhaps you are on one as well which makes bleeding easier. I have had bleeds where I have had to use Wound Care powder or stiptic powder (used for shaving nicks etc) to stop the bleed. Usually that only happens maybe once a year before I started using CBD and changing my sites sooner. 5 weeks is a reasonable amount of time between sites. I have gone 9 weeks using the CBD twice every day. But I shoot for 6-7 weeks max. I’ll never forget my first site lasted a whole week before it started coming off. But with practice and learning over the years life’s much better now.
      You wrote about using an alcohol prep pad, but you apparently don’t use a skin barrier pad. I highly recommend you ask for a box of them next time you order up. They really help the cathedar to “stick” and puts a layer of protection between you and the glue of the cathedar. Which is why “in my opinion” if your body is pushing the cathedar out or turning red, hurting about as bad as the first week, then it is time to start a new site. It’s telling us that for whatever reason, (infection at work or the body rejecting the foreign presence of the cathedar tube) that the site needs attention and started elsewhere. And using the CBD salve has stopped so much of the pain for me that starting a new site sooner allows the old “leaky & sore site tissue” time to heal I’ve noticed that certain areas of my belly can take a Remodulin site better than others. See if you notice it as well.

    • #27072
      Jennifer Beaty
      Participant

      @douglas-knuth, thank you so much for the information. I didn’t realize that there was even a difference between the prep pads and the skin barrier pads. I just thought they served the same purpose. Regardless, I will definitely start using the barrier pads too. Thanks again for that information. And I have already started looking into the CBD salve.

      Thanks again for the information. It’s little tid bits like this that can make a world of difference.

    • #27073
      Douglas Knuth
      Participant

      Good morning Jennifer Beaty. Glad to help you out, these are the things that have helped me personally. Concerning the CBD, I know that the price of CBD oils and salves will appear expensive and truth is for the average person they are a bit expensive. But understand that 3oz of the salve will last for about 6 months in my case. Because I have family that is in the business I was able to try out a few different dosages of salve. I like to use 2500mg CBD salve for the first week or so of a new site for maximum relief from the inflammation, pain etc. Then after 7-8 days I switch down to a dose of 500mg just to help keep any possible inflammation down and the skin soft. I can help you with the cost of CBD products as well. My families CBD website is MaverickNaturalOils.com to look over the products I recommend that you call or email my daughter here at (303) 563-9296 [email protected] because she runs special prices of 50% off their products for those of us with Pulmonary Hypertension. I believe she has a coupon code of “PAH” on their site also to get the discount. And she ships the products out very quickly, usually to you within a day or two. Let her know that have chatted with me about finding relief from the pain etc of sub cut. Remodulin. Whether you use her product or not, good luck to you and you will find considerable relief and live much more pain free and less anxiety about it all. You may always contact me at [email protected] for any other comments or help needs.

    • #27078
      Jen Cueva
      Moderator

      Awesome share @douglas-knuth! I am happy that this may be helpful to @jenniferbeaty with her site pain. I have heard of some using CBD cream and a PLO gel that they get from their compounding pharmacy. I am hopeful that some of these tips and tricks will help you, Jennifer.

      Thanks again to all who have generously offered tips. This is what this forum is all about! This makes my heart happy. 😀

    • #27089
      Colleen Steele
      Keymaster

      Thank you @douglas-knuth for the information! @jennifer-beaty let us know if you try CBD and if it helps you. Don’t forget to check with your doctor or nurse before trying it. I always check on everything, just in case. Love how we all help each other here. Lot’s of great tips being shared.

    • #27096
      Douglas Knuth
      Participant

      Yes, Jennifer Beaty you should check with your doctor to make sure that he/she is ok with the CBD.

    • #27098
      Rosa
      Participant

      Hi Jennifer, I had the same problem when I was on subQ where my site would blister and oozing and was told the medication was back flowing. I was allergic to all kinds of tapes and would get rash and started to itch. I ended up putting a central line for the medication. Due to my allergy reaction my central line site was oozing again and consulted dermatologist and allergist. It turned out I am allergic to propylene glycol and chloroxylenol. My dermatologist recommended using Cordran tape around the site and it works wonders. He also found that Cordran tape helps subq patients with site issues. Maybe you can ask your doctor about the tape. Good luck.

    • #27427
      Jen Cueva
      Moderator

      Thanks for sharing your experience, @rfung88. I am happy to learn that you found a nonallergenic tape that helps. It sounds lie it has really made a significant improvement for you. My apologies as I am not sure how your comment was missed. How are you doing this week?


      @jenniferbeaty
      , I was checking in to see if you have found something that helps you with your subq pain and site. How are things going for you now? Any relief? What did your PH team say?

    • #27453
      Jennifer Beaty
      Participant

      @jenc, thanks for the follow up. My PH team had the RN call me to discuss different options. He suggested a couple of different site locations and sent me a huge bag of samples such as skin barriers and seals to try. In addition, my Doctor is prescribing something else for the pain besides the PLO gel. I’m sorry I don’t remember the name. Unfortunately, I tried my thigh which I will never do again. I’ve been unable to put any weight or stand anything touching my leg for over a week. I’m just now able to sit (somewhat) comfortably in a chair. But this too shall pass. Thanks again for the concern. I hope all is well with you.

    • #27465
      Karla Stutsman
      Participant

      HI. So sorry for your pain. I know what it feels like. Yes, the itching is horrible. I used a prescription cream Triamcinolone. That seemed to work. But yes that is the worse feeling!!!!! I also used ice packs to numb the itching. I was on Remodulin for about 1 1/2 years. The pain was horrendous, my sites didn’t last long, I would be in bed for a few days with the pain. Urgh!!!!! I have since had a double lung transplant on February 1, 2020 and let me tell you I do not miss the SubQ and the side effects. It is going on 8 months pain free! Please take care everyone who is dealing with this. It certainly is not fun. Thinking of you all.
      Karla

    • #27471
      Jen Cueva
      Moderator

      Oh no, @jenniferbeaty, that site on your thigh sounds quite painful, to say the least. I am sorry that you are dealing with so much pain. I am happy to hear that your doctor sends you some samples and things to see if anything helps.

      My PH doctor has always said that we would go straight to IV. With SubQ, so many have a difficult time finding the best site, and the pain at times is unbearable. Then I know others who have done well and prefer to stick with SubQ. Do you know if switching to IV is an option for you?

      For me, if this continued, I would ask about switching. But I already have enough pain in my body and don’t want to add to it if possible. Gentle hugs and prayers that you will find a good site and relief from the pain.

    • #27472
      Jen Cueva
      Moderator

      Hi @kstutsman, congrats on your transplant! I have a local PHriend who also had her transplant earlier this year. She is doing well. How are you doing? How was it for you to be new to post-transplant just before a pandemic hit?

      A year and a half is a lot of site changes and pain. As you mention, so many say that pain is horrendous. Congrats again, and I look forward to hearing more about your life post-transplant!

    • #27499
      Jennifer Beaty
      Participant

      @jenc, you are so sweet! Thanks for the hugs. My doctor mentioned IV when he first put me on Remodulin. But he fears the risk of infection is higher. I’ve only been using subQ for about 18 months. So, I’m still willing to keep trying different sites. I’m sure that my situation is no different from all my other Phriends. I just have to keep experimenting. 🙂

    • #27500
      Jennifer Beaty
      Participant

      @kstutsman, I’m SO glad your transplant went well and you are no longer in pain! In regards to the itching, mine is the actual insertion point. Which obviously is impossible to scratch. ARRG! Is that what you experienced? Thanks!

    • #27501
      Karla Stutsman
      Participant

      I had internal itching at the site. OMG. I would irritate more by scratching around the area. That has got to be the worst feeling!!! I would always change to another spot. Having new and old sites too close could cause issues as well. I finally tried it in my thigh and that seemed to work better and did not hurt as much.

    • #27502
      Karla Stutsman
      Participant

      @jenc, I had my transplant on February 1,2020 with only being on the transplant list for 9 days. I had zero pain from surgery and could not tell I even had surgery. No pain pills! I got home on Valentine’s Day before everything went to pot. It was a weird feeling being able to breathe and took awhile for me to get used to it. All is good. I’m walking, doing stairs. I was back to work 3 months after surgery from home though. I was on every PH medication there was and no more to take so doctor said I need the transplant. I pray for everyone dealing with PH. Just have to stay strong and have positive thoughts

    • #27511
      Jen Cueva
      Moderator

      Hi @jenniferbeaty, 18 months is a long time. Have you found any site yet that is better for you? That thigh site sounds horrific. Yes, I have heard the pain stories by so many PHirneds throughout the years. Y’all are tough than I am.

      I hope and pray that you do find some better sites for you soon. If only we could help ease the pain. Please do keep us posted.

    • #27512
      Jen Cueva
      Moderator

      Oh @kstutsman, thank you for sharing your inspiring story! That is amazing how fast you received your transplant. Not even to mention how fast you bounced back from it!

      You make my heart full of joy, just reading how well you did. Thank you for sharing this and also for your prays. 9 days after being listed is not often heard of, awesome!!

      I am impressed at how well you are doing post-transplant. Tining was on point, and Valentine’s Day, is when I was diagnosed in 2005, so that day for you was also life-altering. May God continue to bless you.

    • #27534
      Colleen Steele
      Keymaster

      Congratulations @kstutsman! Oh, I am so happy to hear that you received your transplant! I love how you returned home on Valentine’s Day. That is way better than chocolate!

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