Winrevair (Sotatarcept) Side Effects

[Karen]

I’m supposed to have my first dose next week. I know that there are a lot of reported side effects, though I didn’t know that rash was so high on the list. I’ll post again after I’ve started the treatment.

[Colleen]

@Karen Endelman we are here to offer support as best we can as you start treatment. Unfortunately you will read that most PH treatments have a list of potential side-effects and everyone reacts differently. I guess it’s a matter of understanding how you might feel after and what you personally think you can handle and what you can’t. Keep a journal as you begin treatment listing days, times and activity when side-effects occur and rate the level of discomfort. That will help you and your team decide if this is the treatment best for you or if you should try something else. Keeping my fingers crossed for you!

[Aunt Lizzie]

Hi Meghan, I began the trial here in Australia in mid-2019 but after the second lot of 2 injections I had trouble with my kidneys. It felt like gravel in my gut, drinking a lot of water and food tasting awful. I pulled out of the trial and it took about 3 months for my system to get back to normal. Everyone reacts to meds differently so this was just my experience. Personally I would not go in another trial.

[meghan-nevada]

Oh wow, so sorry you experienced that. What treatment are you on now?

[Joanne Sperando]

I just started June 24th! My first dose was half the prescription amount. I had a nosebleed that night but that’s really that unusual for me with my PM oxygen use. Will post again after my next dose.

[jen-cueva]

Hi, @Joanne Sperando. I am so grateful you haven’t had many side effects after your first treatment last month. Hopefully, you’ll continue to do well with Winrevair. Have you noticed any improvements, or do you think it’s too early?

I am thinking of you and sending you extra gentle hugs, love, and prayers as you continue this new treatment. 🙏🤗

[jen-cueva]

Hi @Joanne Sperando, How are you doing on the Winrevair? Will you be attending the PHA Conference? I’m thinking of you. 🤗

[dianacaudillmsn-com]

I am getting ready to do my maintenance dose of Sotatercept on Monday 7/08/24 I do not have a rash, however I do itch and am dealing with headaches and diarrhea. I have been dealing with the headaches and diarrhea for quite awhile.

[jen-cueva]

Hi @Diana, I’m sorry you continue struggling with headaches and diarrhea. Itching is no fun, either. Hopefully, you are tracking these side effects to share them with your PH team. As with most PH treatments, they all have side effects; it usually tapers down some after your body adjusts. If not, it’s about weighing the side effects and any improvements.

Have you noticed any improvements since beginning Winrevair? 🤗

[jen-cueva]

Hi @Diana, Have you experienced any relief from the headaches and diarrhea yet? How are things going? I’m thinking of you today. 🤗

[dianacaudillmsn-com]

Good morning Jen,

Thank you for checking on me. Unfortunately I am still having bad headaches, however I adjusted my Imodium intake and the diarrhea is better. The itching seems to die down after about a week and then it is tolerable. I have had three injections of the Winravair. We are all different and someone else might not have any side effects

[jen-cueva]

Hi @dianacaudillmsn-com, I am happy to hear at least the diarrhea isn’t as bad. Hopefully, the headaches won’t be as bad for you with more time. I just thought of something. Do you think the headaches could indicate dehydration when experiencing diarrhea? I know I get horrible headaches when my body is feeling dehydrated because of increased urination or diarrhea, etc. I would see if that helps if you haven’t yet. It may be worth a try. Of course, if you are on any fluid restriction, check with your PH team.

As you mentioned, we are all unique, and our bodies react differently. Headaches are the most common side effect of PH treatments. But I hope you will soon have fewer side effects, my PHriend.🤗

[dianacaudillmsn-com]

A question for the group, is anyone having any issues with their blood pressure going to low, I have been having some dizzy episodes and my blood pressures are low

[jen-cueva]

Hi @dianacaudillmsn-com, You may want to inform your PH about decreasing your blood pressure. All PH treatments cause our blood pressure (BP) to decrease to decrease pulmonary pressure. Because you are also experiencing dizziness, be careful and slow going from lying to sitting and sitting to standing.

My BP was on the lower side before PH, so my PH team has to be careful with my treatments. If you are also on diuretics for swelling, they also can decrease your BP. I suggest tracking it for a day at different times and letting your PH team know. They will probably want you to take it several times per day for a few days unless it is so low they need you to come in.

Are you on any fluid restrictions? If not, water and hydration help, too.

But it’s a side effect of almost all PH treatments. Keep us posted, and get up slowly and carefully.

[meghan-nevada]

My doc started me on low does midodrine when I started Veletri last October because my BP was also very low.

[jen-cueva]

Hi @Meghan Nevada , how are you doing in this summer heat and humidity?

I, too am taking midodrine three times per day, for my POTS, which I shared about in another post.

It’s great to see you post and thanks for hsaring your experiences with us.

[jen-cueva]

Hi, @Meghan Nevada ,
It’s lovely to see you posting again. Are you still in TX?

I’m sorry about this rash. Did your PH team suggest anything to help with it? I would imagine this may be short-lived, but they would know best. So, I’m happy you have contacted them already. Please keep us posted, my PHriend!

[jen-cueva]

Hi, @Karen Endelman Hopefully, you will not have any issues once you receive your first dose of Winrevair. But as Colleen mentions, our bodies react differently; it’s best to check with our PH team. I, like Colleen, suggest keeping a journal at least for the first few weeks when transitioning or adding another treatment.

Please do keep us posted. I’m sewndinmg you positve thoughts and prayers, my PHriend!

[jsexton]

My husband took the second shot on Friday. However, they kept him at the original dose because his blood count adjusted just a few points. So far, we haven’t seen any other side effects from it, but with him being on all the medicine he is, it would be hard as he already has diarrhea and headaches from the remodeling. We are hoping he can go up on the next does.

[Colleen]

@jsexton thank you for giving us an update! I don’t have experience with Winrevair (Sotatarcept) but my son was on triple therapy, Flolan being one of treatments. His doctor would often say, “The good news is, his body really reacts to the treatments, the bad news is, his body really reacts to the treatments!” He would get horrific migraines if we didn’t titrate slowly. It would take a lot of patience getting to the dose we wanted him at, but you know what they say, good things come to those who wait. I’m praying in the long run, this treatment will significantly help your husband.

[jen-cueva]

Hi @jsexton , I am sorry your husband’s Winrevair is on hold because of his lower blood count. This means they are monitoring him closely, as they should. It’s not unusual to wait and not titrate (increase) to the next dose when starting a new treatment.

But no other side effects are positive updates. Let us know if his blood counts stabilize enough to increase, as they think he would be ready to increase. This is when I remind myself that slow and steady wins the race.

How are you doing this week with managing this all with him? Big hugs

[jen-cueva]

Hey @jsexton, how are things going this week? Is your hubby still on hold? Thinking of you and your family. 🤗

[Kathleen]

I started it and have had 3 doses. After the first dose I had headaches every day, but those eventually went away

My blood work has been a little off but not enough for them to stop my shots. I feel a difference for about 2 weeks and then I am back to where I was before. I do enjoy those two weeks though.

[Colleen]

Thanks for sharing your update @Kathleen Grady . Since your body seems to be tolerating the treatment to the point that it’s not as effective as when you first started it, will they be increasing the dosage? Have you had a PFT or 6 minute walk since starting it? I remember sometimes when Cullen started a new treatment or increased dosages, being surprised to see improved test results even though he wasn’t quite feeling the difference. Maybe that is the case for you?

[jen-cueva]

Hi, @Kathleen Grady; I’m happy that you are noticing some improvements, especially in the first few weeks. Also, the bad headaches have subsided is great news. 🤗

Because this is done every 21 days, it sounds like you’ll get two good weeks at least after each injection. But we also hope that as you continue recieving the injetions, that two weeks duration will increase.

Thanks for sharing your experience. When is your next injection due?

[Roxanne Giustini]

Thank you for sharing your experience so far. I had my first dose on 7/2 and was supposed to have my second this past Tuesday, 7/23. Unfortunately, I had to pause for now because my hemoglobin level had gone up two weeks in a row. It was interesting to read posts about the facial rash. I have been experiencing that but didn’t realize it was a side effect.

Going to have CBC drawn again 8/15 and then depending on levels, discuss the possibility of continuing. Please keep us updated on your progress with the medication!

[jen-cueva]

Hi, @Roxanne Giustini; I’m sorry about your blood count. I know one new treatment is coming out later this year and should be similar, but without affecting the blood count as much as this one.

Hopefully, your counts will be better next month. But I wonder if it’s because you stopped the treatment, which would make sense. But I also wonder if taking a break will allow your body time to better acclimate to the changes and will level out some.

If you can’t continue, what plan does your doctor have? Thanks for sharing, and please keep us posted.

[Col]

Good Morning Megan! I am sorry to hear about your side effects from the solarcept! I am taking my second dose today and to be honest, my side effects have been quite similar to yours.

I’ve only had two nosebleeds so far but the headaches the first few days after the injection have been challenging.

As far as the rash goes, I was diagnosed with lupus so I already had an established ” butterfly ” rashes on my face, chest and back.

I am taking lower doses to start to try to alleviate some of the symptoms from side effects.

I’ll be happy to continue to share with you as we progress through this together. Just remember, day by day. You are strong, beautiful, resilient and courageous. Be kind to yourself. 💕

[jen-cueva]

Hi @Col , your words of support and encouragement were so kind. Thank you for taking the time to offer others love and support while you manage your struggles.

You’re such an essential partof our PH News forums- thanks. 💜

[doc]

I’m on my 4th shot and a loving it so far. I went from using oxygen most of the day to not needing it at all.

[jen-cueva]

Wow, @Doc! That’s such an incredible update! I knew that the PH specialists were amazed at the results of the trials. I hope this continues for you. Thanks dfoir sharing your update with us!

What are you excited to do that maybe the oxygen linited you to before?

[Col]

Thank you Jen! That’s very kind of you to say! You truly are such a beautiful woman on the inside and out!

Doc, I’m thrilled to hear of your progress!

Has anyone who takes this experienced excessive sweating and weight loss? I’m just curious 🤔.

I wish everyone a gorgeous day!🌄

[jen-cueva]

Hi @Col, you’re describing yourself, my PHriend! Thank you.

I’m not taking Winrevair, but I have had hot flashes, probably linked to my age.

😉

[Col]

Hi Diana and Meghan, you both have been on my mind and in wondering how each of you are feeling lately?

I’m hoping and praying that the sude effects from Solarcept are starting to ease up a bit; I know they can really bring you to your knees at times.

But I know each of you have the strength and courage ❤️; you both are exceptional women who don’t give up! I hope to hear an update soon and please take the very best care of yourselves. You both are worth so much in this life! 🫂🫂💖💖🏵🌸🌼🌞

[dianacaudillmsn-com]

Thank you for your wonderful words of support!!! I am doing ok. Headaches are so difficult at times and nothing really helps, however I am going to try hydrating more. Jen indicated that headaches can be worse if you are dehydrated

[Col]

Diana, I’m so sorry about the headaches but I will tell you that you are not alone in any manner. 🫂 I have been having migraines and stomach issues as well. I’m also on ambersentin so I have daily nausea.

I know this sounds a bit odd, but when those migraines hit, I drink a mountain dew slushy. The caffeine and cold really seems to ease the pain. Also, my best friend purchased an ice pack that goes over your head and down to cover your eyes. This also helps and I thought to share.

I’m so happy to hear that you’ve been able to adjust your immodium to get some relief! Dehydration is no joke; I was actually hospitalized for that last year.

Are you on diuretics, Diana?

Wishing you relief and a better day tomorrow 🙏 ✨️ 😊 💕

Colleen

[dianacaudillmsn-com]

Good evening Col,

I am on a diaretic 2x daily, I have tried hydrating as Jen suggested earlier. I am drinking one lrg bottle of Gatorade, I have bumped up my water intake and the headache has gotten a little more tolerable. I enjoy the small success!! I am doing my fourth injection on Monday the 19th and I am so hopeful that I will someday be able to go without the oxygen 24/7 !!! It is so promising to hear a member be able to be able to go without the oxygen!!!!

[Col]

Has anyone recently increased their dosage?💞

[jen-cueva]

Hi @Col, excellent question. This injection is every 21 days for most, so some of our members should have increased recently.

[Col]

Diana, you are so strong and courageous! I know the headaches are horrible! I will titrate up soon too so I’m excited to check in with you!

I actually went on Amazon and got my favorite flavors of gatorade zero in powder form and mix with water; they definitely help!

I’m thinking of you often and I hope you find relief soon, my phfriend! 🫂💖☀️

[Col]

One thing that really helped me- I initially balked at oxygen 24/7. My PAzh Dr said treat it like a medicine; because it is. Let’s see where it leads. So I can go without it at times. Other times, I’m right back to it. We learn together!💞💖💞

[Col]

And please keep in mind, I was told at the end of January that I had a 50/50 chance of survival for the next 6 months. I’m still here.😊

[dianacaudillmsn-com]

Col,

I have learned that PAH people are a tough group of people!!! This is best group of people!! I go up on Monday and this will be the 4th shot 1.7 is my dose I will let you know how it goes

[hkt]

I’ll be taking my third dose in another week. So far, no adverse side affects, but I’m also taking Orenitram, Tadalifil (Adcirca) and Ambrisenten (Letaris). Plus, a multitude of other meds, so my side affects kind of all blur together. But, haven’t gotten a rash.

[Colleen]

That’s great to hear @hkt ! Have you noticed any improvement since starting it?

I get the symptom blur from being on multiple medications. My son was on triple PAH therapy too. His doctor would do his best to add a medication or change a dosage one at a time so we could pin down side effects better. He is a transplant recipient now and there have been a lot of changes to his meds this year and there have been times when we just weren’t sure what was helping and what was causing problems.

I wish you the best with all of your treatments!

[Escritor]

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Buenas tardes; mi hija lleva un año en España tomando Sotatercept en el estudio en Fase 3. </font></font>

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Necesitaba una triple terapia (estaba con Tadalafilo y Macitentan) Ella está muy estable pero no hemos observado mejoría. Eso sí, estabilidad que no es poco… He observado en otros casos (el ensayo es en niños de entre 14 y 17 años) los niños participantes junto a mi hija, que estaban con una triple terapia (Tadalafilo, Macitentan, Trepostonil subcutáneo) han mejorado muchísimo, es más, incluso ha salido un pequeño de lista de transplante. Con lo cuál está funcionando muy bien la cuarta terapia. Los efectos secundarios que he observado en mi hija han sido que dónde le ponían la dosis de 27,5mg (0,55ml) en el brazo, se le ponía rojizo y mucho dolor. Se corrigió dividiendo la dosis en ambos brazos y todo ok. Otra reacción fue manchas en la piel. Se pensó que podría ser telangestacias pero después del estudio eran arañas vasculares. En general, contento con el ensayo. </font></font></font></font>

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>
</font></font></font></font>

[hkt]

My breathing might be a little better. I was on the study for the Orenitram starting in 2008, until it was FDA approved in 2015. I’ve had a couple of hospitalizations (non PH related) and my doctor had to calculate taking me off the Orenitram dose to put me on the Remodulin (because of having to have anesthesia), and then re-aclimating me back to the Orenitram. This was my choice. I don’t want to go on Remodulin (just don’t want to deal with the mixing of the med and the sub Q pump), but I have told them that if it comes down to it, and that is what will be best for me that I will go on it.

[Colleen]

@hkt I hope you can avoid Remodulin if that is your wish, but if you end up on it I can tell you from experience, it becomes a way of life. The whole process will become 2nd nature to you. My son was on Flolan for 6 years which is even more daunting to deal with but we did. He attended grade school with it and his dad and I took turns mixing medication. I wish you the best!

[carol-volckmann]

Hello @hkt, I hope you do well without having to take Remodulin. I have been on Remodulin since 2006 first SubQ (that was really painful) then IV Hickman line – no pain and now so use to having an IV line 24/7. The mixing, as Colleen said, does become 2nd nature. I mix 7 cassettes at a time that last 14 days. Put them in the fridge and change the cassette every other day.

Remodulin has been a game changer for me along with Lateris and Ambersentin.

Goo luck to you finding what works best for you. Everyone is so different in how one drug really works well for them and not the next person. You are in my thoughts and wishing you best outcomes!

[hkt]

Thank you! When I got diagnosed in 2008, the first thing they said was we need your family here tomorrow. Back then it was a death sentence. My daughter was 9 and my son was 5. I was devestated thinking I wouldn’t be there to see them grow up. I bought momentos for them to be given at their weddings and other things. They are now 25 and 21. My daughter has been married 2 years ago, it was small, just the parents, grandparents and the bride/groom siblings. This past May 2024 we had the big family and friend wedding. She was beautiful in her dress. She not only did the daddy/daughter dance, but did a mama/daughter dance as well. I pray that I will one day be able to celebrate with my son as well.

[Colleen]

@hkt I can’t remember if I told you that my son was also diagnosed in 2008 with idiopathic PAH. He was 8 years old, and we received the same grim lifeline for him. He was critical, and I don’t think they were hopeful he would live for another year, but he did…and then some. He responded well to treatments for 5 years, until he unfortunately declined rapidly. He received a heart/double lung transplant in 2014. He is 10 years post now, 25 years old and in college! I know many patients who received the same life expectancy when diagnosed and continued to live long lives without needing a transplant. There is hope sometimes, even when it seems like there might not be any.

[jorgescandon]

Hi Carol, nice to meet you. I started july this year with Remodulin the only problem that I´m having is that I have fluid retention in my legs and abdomen, did you have any kind of similar problem?

[Col]

Hkt, your journey inspires me! I’m so thrilled that your daughter’s wedding was so amazing! Congratulations! These are the pieces I love to hear the most!

That diagnosis in 2008 must have been shocking and frightening!

Look at you today! Incredible, inspiring and happy. We all have our off days but you, my new friend, just made a milestone wish happen. That makes me grin like a little kid!

Please keep me posted on how you are!

[Col]

Hi Diana! Sorry for the delay in getting back to you! How are you?

I have great news! Ice hit my max dise for Solarcept and things continue to get better every day! The first few days after the injection I don’t feel very well but my O2 Sat is going up, up, up and away!

I’ve decreased my oxygen use immensely and I’m so thankful and grateful! I pray this happens for you, dear friend!

I just have a very positive feeling that this will happen to you too!

Please let me know how you are and how the rashes and itching are. I also have both of these symptoms but again, I also have lupus.

I’ll look forward to hearing everything about you and what’s going on, my lovely phfriend!

[dianacaudillmsn-com]

Good evening Col,

I am so excited for you!!! That is the best news!! Unfortunately I had to stop the Wineraviar. I had an allergic reaction to something and my Dr is really stumped she currently has 38 patients on wineraviar and no one has reacted this way. We stopped the medication and we are going to try it again in 3 weeks to see if I react again. The reaction has cleared up thank goodness!! Once again I am so happy for you and I can not wait to hear your progress. Prayers my sweet friend!!!