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Remodulin, subcutaneous therapy
Hello to everyone and Happy New Year,
My mom is in Remodulin subq. I would like to hear from the members who have been in Remodulin at which concentration (1mg, 2.5mg, 5mg, 10mg) and at what dose level have you saw improvement in PH symptoms?
How long after you started subq treatment?
Thank you all,
Vivian -
22 Replies
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Hi Vivian, I went on remodulin subcutaneously 8 years ago stating out at 2.5 slowly increased to 5 and was steady there for 7 years (I am 75). My PAH symptoms did get better and I have been stable since. The doctors also had/have me on Adcirca a Letairis. I was also encouraged to excersise – what worked for me was the treadmill.
The hardest issue with subcutaneous is the pain especially changing the site when one side gets too painful changing to a new site is no fun. To treat myself I would first remove the old site and go ang take s long hot bath or shower free from the tubing or pump. Then would numb up the new site area for about an hour. I was able to take pain meds that helped and did not bother my system.
I did not have any success finding a good spot on my thighs nor back of my arms, I could only have success on switching from one side of my tummy to the other.
One thing that really helped in bathing was to use Aqua Cel Foam- totally water proof and would not irritate my skin as all the taping would do. I was even able to remove the pump, cover the site and the cleo with the Aqua Cel Foam and go swimming! I would even wear one 24/7 as it protected the site. When my doctor saw how much my site was no longer irritated he made sure the special pharmacy would supply it for me. I used the 4×4″
There is no question in my mind the continuous flow of remodulin reduced my symptoms and has kept me stable. My 6 min walks, etc have been very stable
Unfortunately last Feb I had to go on the IV HICKMAN LINE for delivery because the subcutaneous delivery did become too painful after so many years, yet many folks have been on it much longer, our bodies and what works is different for all of us.
The nurses at the special pharmacy are truly helpful and caring and they are their 24 hours a day to help your mom. Do not hesitate to reach out to them and make sure your mom’s doctor knows how she is doing and reach out to the doctor’s team and to have s phone number she or you can call them.
Wishing your mom all the best- this stuff does work! And wishing you all the best Vivian.
Big hug to you both,
Carol -
Vivian, my son was on Remodulin SQ for two years. Turns out the reason he never saw improvement (and continued to get worse) was because he was misdiagnosed with the wrong form of PH. His is CTEPH, which is caused by pulmonary emboli. When he had PTE surgery to remove the clots, he got better.
RE the site pain: After he had been on Remodulin a little over a year, Acredo (the specialty pharmacy) recommended a different type of needle that went in slantways, instead of straight down. It helped a bit, and it stayed in better — before switching to the new needle type, he was having to change sites every 4-7 days because he would have an allergic reaction to the medication that would make his skin bubble. The different needle prevented that.
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@vivianliakouli I don’t have experience with this medication and haven’t taken it but I know that when titrating on a medication definitely start out slow. You don’t want to increase too quickly if you can avoid that. Sometimes titrating on medications can cause dramatic differences in blood pressures that can cause migraines and other symptoms that may not seem too pleasant at first. My advice would be to communicate openly with your doctor about how you are feeling and keep a journal to track symptoms and when they start to get better or worse. That allows patterns to be seen and things to be adjusted accordingly.
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NEW SITE PAIN: I FOUND THEE BEST CREAM FOR PAIN!!!
While a patient at Mayo Clinic, Rochester, MN, If had to change my site. As usual, the first 8 days felt like 2 knives digging into me! I was given a cream made only my Mayo during the first few days that lessened the pain by 85%. That was a year ago. I was told IF Mayo would give me a ‘script, it would not be covered by insurance & few could afford it. I started using CBD and it helped almost as much.Last month I again was hospitalized at Mayo and needed to start a new site. I again got the same cream. I again asked for a ‘script AND GOT ONE!!!! No real name but the contents on my ‘script are: amitriptyline 2% ketamine 0.5% lidocaine 2% in lipoderm
I plan to fill it at my local pharmacy!!!You may wonder HOW? I kept my Subq and not an IV of Remodlin? I insisted! Had to sign papers; made the pharmacist crazy with worry; had an audience when refilling! I did not want to leave the hospital after a few days and have to start a new site when the IV was disconnected.
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Mary, that is great that you have found a cream that helps you. Good for you for advocating so strongly for yourself. My son did IV Flolan and even with that the dressing and site changes could be so painful. I know what a relief it is when you finally find products that help more than hurt.
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I think it’s amazing that you found a combination that works for you! Finding a good cream to help with the site pain really can be a struggle for many patients. I don’t personally have this trouble with PH therapies, but I do have significant site pain with my feeding tube and have to sometimes use a lidocaine and antibiotic based cream in order to get some of that pain and swelling down. It just can be so uncomfortable and really can interrupt sleep a lot.
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@colleensteele I can relate to that site dressing being painful too. Like I said in the previous post, I don’t have the site for PH meds, but I do have to do dressing changes of my tube site that can become really painful especially if the area is sore or if there is any infection around the site at all.
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Hi @arfrasco, here is another sub-forum topic that may interest you because it is about subcutaneous Remodulin. I just thought I would tag you on this topic, too, if you find any info shared by our members here helpful.
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My physician is considering subq Remodulin for me. I have been on iv Hickman Veletri for 3 years and Uptravi for 2 years. The side effects are so debilitating for me: severe headaches, chills, nausea and cramping, flushing and exhaustion. I am worried about possible new side effects with Remodulin and being prepared. Since it has been a while since Veletri treatment I am also concerned about what to expect now.
Do I push for the known drug?
I also have been experiencing hand tremors and leg cramping? I am taking 60mg of Lasix and 150 Spirolactone daily.
Have you experienced these problems?
Thanks for your thoughts.
Happy holidays.
Karen
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Hi @kbogetz, many here do well with subQ remodulin. One person I was going to tag was our sweet @cdvol3gmail-com. I’m grateful she has shared her thoughts since I believe she has been the Queen of subQ managing it for years. I hope you and your PH team will find the best solution for you and your body.
You mention leg cramps and hand tremors. I have both and also take Lasix and Aldactone but in higher doses. I also take a potassium pill daily to help keep my levels up since diuretics often deplete the potassium and other electrolytes. That often leads to cramping. Ask your PH team about a potassium supplement and describe what is happening. The balance between dehydration and fluid retention is challenging.
Please let us know how things go and what your PH team has to say.
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Hey Jen, thanks for asking, appointment with Dermatologist went well – no new chuncks to take off – next appointment in 3 months.
I also take Potassium every day, but I don’t get hand tremors cramping yes and yes, it is a balancing act. There are just so many issues to deal with! And you have the additional issue of the long term effects of covid you are dealing with still!! I don’t know how you do it AND keep up with a work load reaching out to all the folks on the forum plus so many others.
Jen, you really are an inspiration to so many. Here’s hoping the new year will bring you and Manny so much more joy, better health and more love! ❤️
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Thank God that your dermatologist appointment went so well, @cdvol3gmail-com. Here’s to keeping that report again in 3 months.
You are so kind; your thoughtfulness is deeply appreciated, dear PHriend. Our forum members are some of the best people to love and support. Y’all support me in many ways each day.
Thank you for the encouragement. I wish you and Dick more joy and better health with Cloud in 2023!
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Thank you Jen, ???? you always find just the right words of encouragement!
You and so many others came to mind when I read that Sciencetist have discovered that the covid virus was found in the brain of some patients and in other organs of the body. That does not sound good, but on the other hand it might be, knowing that, doctors can zero in with meds that will help.
Dick, Cloud and I are going to try again to travel down your way in March. We really hope we will be able to make the trip this time.
We are both doing well with our check ups and Cloud is coming along with his training.
Love and lots of warm hugs for you and Manny and wishing 2023 will be a good year for answers that give positive outcomes. Certainly filling 2023 with Laughter, Joy and LOVE ❤️ always…
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Hi @cdvol3gmail-com, thanks for your heartfelt words. Isn’t it great that we all can lift each other? That’s what it’s about here, supporting and learning to lift others when we can.
That would be amazing if you could make that trip in March. So, you 3 are on your toes and have no hiccups between now and now.
Have a safe, relaxing weekend with Dick and that fur ball cutie, Cloud.
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Hello Karen, when I was finally diagnosed with PAH my doctor said “,,,if youvwere my mother, I would like to be aggressive with this disease ..” he loves his mom and so I went on Remodulin SubQ for 16 years. For the first several years the subQ’s pain I was able to tolerate, the positive side was Remodulin improved my symptoms greatly – 6 min walk, right Heart cath etc. BUT, subQ pain became unbearable no matter where I would switch the to. I finally could no longer stand the pain – pain meds stopped working. I switched to the IV Hickman line. The second I removed the subQ pain was GONE!. The Remodulin worked and still does 5 years later. No more pain – the only side effects I have from Remodulin is flushing at times. Important to note I am also on Letaris and Adcirca. My Pulmonologist wanted to hit my PAH 3 ways as studies have shown this combo has really been a game changer for many. You might want to talk to your Pulmonologist about hus/her thoughts on this
I wish you all the luck with this. The Hickman is cumbersome at times. My husband and myself have learned to mixing 7 cassette at a time and refrigerate all except the one we are going to use next so I only have to change my pump and cassette every other day and do my mixing every other week. I hope this helps. I know we are all so different and maybe you heard from others their experience.
Wishing youvthe very best outcome and a New Year filled with promise, joy and love ❤️
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Thanks so much for your reply. I am going to ask about potassium supplement when I meet with my doctor. I will let you know what I find out.
karen
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I am on remodulin. I have a Hickman. It worked well when first installed in October of 2021. I increased my dosage up to 34. And then I sort of plateaued. When I tried to increase I went down hill. I have been at 32 since about March of 2022. I have been listed since the first of November. My doctors and I believe I will receive a transplant soon. Remodulin definitely helped me but not for long…
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@clydedodge oh my gosh, I just read that you have been listed for transplant! As a mom to a transplant recipient I understand how it’s the last resort and not an easy decision to make, but congratulations on being listed. I will pray that you receive the “call” soon.
My son was on Flolan for almost 6 years. Some patients do well on Flolan or Remodulin for decades but my son declined after 5 years. Treatments stopped working effectively for him which ended up with him being listed.
@cdvol3gmail-com and @ripple76 it’s funny that people who have gone the subcutaneous route can’t fathom the thought of doing a central line instead. SubQ wasn’t available when Cullen had PH so his only option was a central line/Cadd legacy pump for Flolan. When Cullen and I hear about what people go through using SubQ we can’t imagine him ever deciding to go that route. A central line is a lot of responsibility and believe me, it comes with it’s share of pain but to us SubQ sounds worse.
He did have the option at one point to switch to IV remodulin which has longer shelf life and a little less responsibility but we had the Flolan routine down pat and he was doing well on it so we thought, why change what’s working.
It’s a matter of deciding what you as the patient feel most comfortable dealing with. At least now there are more options than when Cullen had PH and I hope more promising treatments are developed in the future.
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Hi everyone. My last entry on this subject wouldn’t post. I’ll try again in this New Year.
I have been on subcutaneous Remodulin for about five years. My CTEPH/PAH was diagnosed in 2014. My dosage is 5mm/ml and I use 3ml each time I change my pump. When I was in the hospital in 2019 my pulmonologist wanted me to reach .51ml/hour but it was too painful so we compromised on .46 or 47 moles. A couple of years ago I was chasing around trying to find a place that a new site wouldn’t cause so much pain. Finally on advice when I have to change the site I use an area about a hand width on either side of my belly button. It takes 8-10 days for the site pain to subside. This has been my pattern. The important thing is that I stay on Remodulin. There was one time when I was away from home and my pump stopped with no vibration or beeping. I was off Remodulin for nearly four hours. I was told that was the limit or I’d have to start from the beginning again. I corrected that and was fine. Needless to say that I got a new pump.
I am not too familiar with the Hickman catheter but it sounds like a lot of trouble. One major problem I had when I was in the hospital for double pneumonia last November was no one is the hospital was familiar with PAH and I had to control that and changing pumps. In fact due to staff shortages I found myself directing what I had to do next. I didn’t really get started on recovery until I got home.
All this is part of surviving this disease. Hang in through 2023.
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When I went on Remodulin subQ about 15 years ago it was a game changer – the Remodulin worked! BUT … the pain got do bad not even strong pain meds helped. I was switching from one side of my tummy every few days!
When I was switched to the IV Hickmann line the instant I took out the subQ all the pain was gone and no longer did I need to be on pain meds.
The Huckman line is a bit cumbersome to deal with. I have been on 2.5 Remodulin dosage for 5 years. There is a pump about 6″ long and you attach a cassette to. I have to change my cassette every other day and change to a new pump. For extra caution I use an Aqua Cell Foam to cover the site which is totally water proof. Accredo/ Express Scripts is my supplier of everything. You do have to have t h e pump/cassette outside the shower – we put a hook just outside the door. It can be a hassle but no pain.
I discussed this with my team a long time to see what might work best for me.
Good luck and a very Happy New Year to everyone ????!
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Hello all. I entered the clinical trial for subQ remodulin in 1998 and am still on it, 24 years later. I didn’t improve for many months-it took a long time. I think I noticed a change a year or two in. I was quite overweight at the time of diagnosis and I mention that because as time went on, I slowly started losing weight. Then I got diagnosed with hyperthyroid in 2004 (PH often goes hand in hand with thyroid dysfunction) and dropped 20 lbs very quickly. All this weight loss acted like an automatic increase in my dosage as there was less of me to medicate. My dosage went up and down over the years and now, I’m at 97 ng for the past several years.
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Wow, that’s always incredible, @joanne-sperando! I love hearing that some are on the same treatments for years- 24 years is a long time! But being on SubQ Remodulin since is a blessing.
You’re right; many with PH also have thyroid disorders.
Like Colleen, I hear many on IV who are scared of SubQ. But also, many on SubQ refuse to be put on IV medication. Thanks for adding your experience, I know it offers hope for all reading.
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