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Potential new drug in phase 2, claims to show better effect than Sotatercept
Hello!
I’ve been following this forum from the sidelines for a while and have pretty much read everything written here.
I am particularly interested in the clinical research being conducted on new treatments and having followed the forum for a while I know there is quite a lot going on on the research front. It will be really interesting to follow the FDA’s decision regarding Sotatercept in early 2024.
I myself live in northern Europe and here too we have a number of companies that conduct research in the area. Most carry out their clinical studies in the USA so we Europeans have very few opportunities to be included in these.
Sotatercept is probably the candidate we are all waiting for with the most excitement and I have followed the drug’s development for a long period. However, I have come across another drug called CS1 which is currently in a phase 2 clinical trial. Here they have reported partial results of the study and also reported the results of the effect on one of the patients (the rest are still blinded). To my great surprise, I think I see a better effect from CS1 than what Sotatercept could report. In addition, the phase 2 study of CS1 is carried out in collaboration with Abbott and above that, you have a scientific board consisting of prominent people in the field such as Dr. Raymond Benza and Dr. Deepak Bhatt.
I wonder if anyone here, with all your knowledge and dedication in the field, has heard of CS1 before? Is this a candidate that could possibly be as promising (if not more so) as Sotatercept?
Here is information to read about the effect on one of the patients:
https://cerenoscientific.com/press-single/?releaseIdentifier=99C3CB5850C19A5B
For those who are interested, I am happy to share a comparison in effect with Stotatercept as well.
Please share your opinions with me. I am very curious about CS1 and would love to hear if anyone has any opinions or thoughts on this candidate.
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30 Replies
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Hi Jojan, very interesting and promising study for PAH. Thank you for forwarding on this new research – looks like it could be another break through for so Nanyang with PAH.
The FDA has a “must approve or not” of March 26th for Sotatercept. I am definitely in line for that injection every 21 days. My Pulmonologist also sees this as very promising for patients with either subQ or IV sites. Thsnk you again Jojan 😊
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Thanks Carol! Yes, Sotatercept is something we are probably looking forward to. It is good now that research is moving forward and that more treatments seem to be coming for us. I will be very surprised if the FDA does not accept Sotatercept. I read this article in CBS recently. Can anyone guess what treatment or clinical study this lady received? The course of her illness seems to have improved extremely much and the journey she has made is impressive and hopeful to say the least. It would be very interesting to know what kind of treatments she received.
Here is the article:
https://www.cbsnews.com/amp/minnesota/news/from-being-told-she-had-3-days-to-live-to-running-her-1st-5k-race-amanda-fischer-believes-in-miracles/
cbsnews.com
From being in hospice to running her 1st 5K race, Amanda Fischer believes in the power of miracles
For Fischer and her son, Paul Benally, the first health scare came 11 years ago when he was bit by a mosquito and contracted encephalitis, which caused his brain to swell. That was only the beginning.
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Wow, what an incredible story, @Jojan! That’s impressive results, and I appreciate you sharing this story. I had not seen it, and I know others will also enjoy and become inspired after reading this story.
I also am exciting to learn more about the CS1 you shared. The upcoming years will be an incredible time to lewarn about these new treatments.
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Now I may be rude but I have actually tried to contact Amanda via social media with no success.
Do you think it’s going a step too far? I am so curious as to what kind of treatment she received and it would have eased my conscience to know that it is a treatment that is possibly about to become available on the market.
My opinion is that the more treatments there are in PAH, the better it is for all patients. Everyone reacts differently to different types of treatment, but the more opportunities there are, the better for everyone.
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Hi @Jojan, I don’t think trying to contact her on social media is rude at all. I don’t know of her either. IDK if she may be a member of any FB PH groups, but that may be an option to look for her. Or did you locate her and message her with no response?
Yes, you make a solid point about how we are all different. However, the more treatment options available will eventually benefit many of us in the PH community. Thanks again for sharing.
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Hi @jen-cueva , Thanks! I have contacted her via LinkedIn but haven’t heard back yet. I have not been able to find her on any other social media. I have actually also contacted the journalist who wrote the article about her but I have understood that they are absolutely not allowed to give out any contact details to her.
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That was an inspiring story!! To go from a death bed to running a 5K is truly amazing. It would be nice to know what drug/drugs she was on. Thanks for posting that.
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Thanks! Surely it was? I am frankly very interested in knowing what treatment or treatments she received.
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I agree, @Jojan. It would be nice to know, although we all respond differently to these PH treatments.
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I follow this company called Cereno Scientific in Europe, which has so far shown exciting results in PAH disease. Now I see that they are moving forward with Compassionate Use of their drug candidate, even though it is still in clinical phase 2 study.
Does this mean that anyone will be able to apply to take this medicine?
So far I haven’t been able to get in touch with Amanda, who after being really sick with PAH recovered to the point where she could run a 5K race. Anyone have any input, thoughts or ideas about the whole thing?
Link from the company’s website regarding Compassionate Use:
https://cerenoscientific.com/press-single/?releaseIdentifier=8E874A7049CD09FD
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Hi @Jojan, this article refers to the study’s patients. It looks like it would allow them to continue receiving this treatment even after the trial is done.
From what I’ve understood, “compasionate use” is usually for patients with life-threatening illnesses without any treatment options available. It would also be up to the physician’s medical team to decide whether other treatment options offer relief.
Others may have other thoughts on this compassionate use program. Thanks for sharing, and I hope others will contribute to this discussion.
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Hello Jojan, did you find out which drug Amanda received>
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Hi Robyn Doyle, Unfortunately not. I have not been able to get in touch with her. Do you have any idea what drug it can be?
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Sorry Jojan for my tardiness in not replying earlier. No I don’t know what drug and I am very skeptical regarding this woman’s story.
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Very good news for the entire PAH sector:
The interesting thing is that it is the same Dr. Raymond Benza who leads Cereno Scientific’s study in PAH for candidate CS1 which has shown convincing effect in the disease.
mountsinai.org
Raymond Benza, MD, Heart Failure Expert, Named Chief of Pulmonary Hypertension for the Mount Sinai Health System | Mount Sinai - New York
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I found this research article about CS1.
Seems to be very promesing:
https://onlinelibrary.wiley.com/doi/epdf/10.1002/pul2.12323
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I appreciate you keeping the PAH community up to date.
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Cereno Scientific is granted Expanded Access by the FDA to drug candidate CS1 for rare disease pulmonary arterial hypertension:<div><b style=”font-family: inherit; font-size: inherit;”>
</div><div>https://www.placera.se/placera/pressmeddelanden/2024/01/31/cereno-scientific-cereno-scientific-is-granted-expanded-access-by-the-fda-to-drug-candidate-cs1-for-rare-disease-pulmonary-arterial-hypertension.html<b style=”font-family: inherit; font-size: inherit;”> </div>-
Hi @Jojan, you are keeping updated about CS1 and the FDA approval for compassionate use. Have you discussed this with your PH care team? I hope to remember to ask mine about this update when I see him next.
How are you doing?
It will be a hopeful year for us in the PH community! So excited about possible new clinical trials and FDA approvals offering us more treatment options. Thanks for sharing!
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Hi Jen, Yes, it seems to be an exciting drug they are developing. Yes, I have discussed this with my PH team. They too are excited about this drug and think it shows very promising results. Dr. Raymond Benza, who you probably know, is on the scientific council of this company and he also praises this medicine. Unfortunately for me, I don’t live in the US which means I can’t join their clinical studies. But for those of you who live in the US, I would suggest you to contact the company to check if there are places left in their study. The main thing is that research is progressing in PAH and the important thing is that there are new disease-modifying drugs on the market. What are your thoughts about this drug?
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Thanks @Jojan! Here’s an article by our News team published this morning on our PH News website. It’s an interesting drug, mainly because it’s a reformulation of valproic acid, an anti-seizure drug. I’ll see my PH team next week and ask his thoughts on this treatment.
But, because I’ve experienced “seizure-like” episodes multiple times, this may be something I could benefit from.
pulmonaryhypertensionnews.com
Cereno's PAH investigational candidate CS1 granted compassionate use
The FDA has approved the use of Cereno Scientific’s CS1 in an extension of the ongoing Phase 2 trial testing the therapy in people with PAH.
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Hi Jen, Thanks for sharing the article. It was really good. If appropriate, please share what your PH doctors said about this treatment. Hope it can help you and many more.
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Hi @Jojan, it’s my pleasure. I’ll certainly update what my PH team has to say about this treatment. I see them later this week.
How are things with you this week?
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Thanks Jen! This week is an “up week” for me so far. More energy than last week, which I now try to take advantage of by going out with the dog as often as I can. Unfortunately, the walks with the dog are not as long as I would like, but I have to make the best of the situation. You never know when it will turn… How is your week going?
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Hi @Jojan, I’m so happy you’re having an “up” week. Like you, I tend to take advantage of those days.
I can so relate to shorter dog walks. That’s me these last few weeks with mine.
My week is an “off” week. I’ve been experiencing a variety of side effects/symptoms. I may have found the culprit: a new medicine for my gout. But I also see my PH team on Thursday afternoon to see how I’m doing post-bronchitis and if my PH is progressing.
Thanks for sharing and asking about my week. We work together as we have up and off days.🤗
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Hello there Jen,
Hope your week turns up then. The up weeks are great and the down weeks are less good. If you weigh great against less good in a scale, the outcome is still positive… it’s all about having a positive mental attitude with this disease 🙂
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Hi @Jojan, you share an important tip. Like you, I reference my days as good and not-so-good days. A positive mindset(most days) has gotten me to my 19th year with PH next week. 💜
Thanks for the support, my PHriend! Enjoy your weekend.
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Wishing you a fantastic weekend too! Did your PH team have any opinions you feel you want to share about the study in question? I have geeked out on clinical studies in PH/PAH and apart from Sotatercept, CS1 is the most exciting thing. I sincerely hope now that Sotatercept will be approved by the FDA at the end of March. After that, I hope that CS1’s research progresses so that you can possibly get both treatments in combination.
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Hi @Jojan, thanks for your thoughtfulness. I saw my PH team on Thursday. Unfortunately, because I was experiencing some complications, we didn’t get to discuss CS1. But we have discussed sotaracept a few times. He did say if my current treatments stopped working, he thought it would benefit me. But he was also excited about how many patients sotaracept could help.
I’ll try to remember to ask about CS1 when I talk to them again.
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Hi Jen, Oh my, hope your complications are better now my PHriend! Yes, Sotatercept will certainly help a lot of patients and I am so glad that the research is moving forward. Regarding CS1, I have a relative in the states who, on my behalf, has been in contact with one of the sites holding the study. According to them, the study is only 12 weeks long and they are just in the final stages of patient recruitment. This contact was made before the New Year. Unfortunately I wasn’t able to attend as I don’t live in the states but from what I read about CS1 I would definitely recommend you look into it further if you are interested in being part of their study.
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