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Tell me your questions about Jascayd (nerandomilast)
I have seen a number of questions about the new IPF treatment Jascayd. In my column, “Make Every Breath Count,” published today (10/21), I addressed when it might become available to patients. I know patients are curious about the cost of this new drug.
I am going to be looking for answers when I attend the PFF Summit 2025 in Chicago, IL, next month. What other questions do you have about Jascayd?
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19 Replies
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I am wondering what you learned about Jascayd at the Fibrosis summit in Chicago this past week. Will it improve lung function in any way? Will it stop declining lung function? Will it work for everyone with IPF or just in certain situations? How long does it take to get the drug into my hands? I requested it the day after it was approved by the FDA, but it’s being held up by applications for grants and bridge programs in addition to my insurance company adding it to their list of medications. The insurance company has yet to determine how much they will cover. It’s so frustrating to know it’s finally approved but I still have to wait.
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I returned home on Sunday. I did speak with a senior Boehringer-Ingelheim representative at the PFF Summit regarding your questions about Jascayd. Their corporate practice refers questions from a publication to the corporate media team. I am awaiting a response.
Sam…
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I was not aware Jascayd is available to patients. Can you let us know how we can proceed to get this drug? It would be helpful if we l knew steps to take to try for approval. Are we required to try the 2 other drugs first? Both have some side effects that have kept me from using them due to present health issues. Please share whatever you can find out.
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Hi All,
I was prescribed this by my pulm yesterday. I am awaiting insurance approval, it’s a tad pricey. I will not start it until I get back from a vacation that is planned two weeks from today. I will be replacing mycophenolate which isn’t doing the job anymore. I was diagnosed 3 years ago, probably had it for 2 years before that, I have ILD, probably NSIP.
Mary
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Just wondering how you are doing on Jascayd. I have been in it for 3 weeks and initially was quite happy to report I did not experience any side effects. However, I am now extremely fatigued, have a constant runny nose, and anxious. I don’t know if it is because of the medication or because I started on 2L of oxygen at the same time. My oxygen levels are fine, but I still feel short of breath moving from room to room.
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Hi Nancy,
I will let Mimi answer your question about her experience on Jascayd. I wanted to comment on your observation that while you have started on 2L of supplemental oxygen and your oxygen levels are fine, you are still experiencing shortness of breath. I assume when you say your oxygen levels are fine, you mean the oxygen saturation levels measured by your oximeter. Shortness of breath and oxygen saturation are two unrelated issues. You should speak with your care team about the shortness of breath.
Sam…
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Just came back from my Pulmo and he is going to try and get me on this new drug. I had tried Ofev years ago and it triggered my pancreatitis so i had to go off
I am on 2 1/2 liters of O2 and am dealing with the constantly runny nose. The irritation and dryness from the O2 causes all sorts of issues including nose bleeds. My allergist prescribed Nasalcrom and the liberal use of Rhinase gel to keep the tissues from drying out. I have to take an antihistamine to stop the “faucet”. Good luck!
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Go on BI cares web site. They have patient assistance for Jascayd as the do for Ofev and other m3dications
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Just heard from my ins co, they won’t pay for it. I’ll appeal but we’ll see. I don’t have high hopes.
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Hi Mimi,
Are you on Medicare with a suppliment company?
I am and wellcare approved and I have recieved the Jacayd 11/12/25.
They indicated it was put on the formulary and your dr can help put it into play.
Dont give up on the coverage as hopefully your insurance company will reconsider.
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I am on medicare however we get our drugs from my husband’s former union, free for life as long as they are in the formulary, which this is not. They are going to make me jump through the hoops of trying Ofev or Esbrit
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I asked my dr, she approved it and I have it in my hands now. Took about two weeks and it cost me nothing.
Was leaving on vacation the day before I received it, so will start it in a few days
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Did you have to try one of the other drugs first? I have not taken other drugs because of side effects .
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Started Jascayd almost 2 months ago and can report that after the first few days of minor issues, I have no determinable side effects. But I am taking a half dose until I finish my half dose of Ofev…
Stay well
Steve -
I have been on and off Jascayd now for about two months. Issues due to heart disease and afib. Med interactions with Diltiazem. My last issue was headaches, lite headed and fast heart rate. I am going to request the 9mg rx and hopefully that will do it.
Anyone else have issues like mine?
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My 93 year old husband passed away last October 1st after struggling with IPF for almost 2 years. Mis-diagnosis and delayed proper treatments accelerated his need for 24/7 Oxygen.
He started on 200 mg. Ofev about nine months ago, but had to stop because of diarrhea. A casual remark by a PA about a very effective substitute for Metamucil, a natural remedy called Banatrol, offered immediate relief. Bowel movements were suddenly normal and his overall condition improved. His checkup showed him to be stable with 2 l. Oxygen, ready to resume Ofev. However, he caught pneumonia during his visit at the clinic and passed away 2 months later. The importance of a good doctor, diet, nutrition and prevention cannot be overstated. He survived 6 cancers and was in good health overall.
Hope this helps someone control diarrhea.
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I’ve been on Jascayd for a couple of months with few side effects, BUT I had leftover Ofev and using it in the AM; Jascayd PM. Will be starting Tyvaso in a few days.
Stay well…
Steve -
Immediately after Jascayd was approved by the FDA my UC Davis Pulmonologist requested my insurance provider Blue Cross/Blue Shield to provide/cover the new drug. The response from BC/BS is that they wont be covering it because it “provides no added benefit” to me since I am doing ok with few side effects from OFEV. UCD has filed an appeal with more medical backup but as of right now it is doubtful that my medical insurer will cover all or part of the cost of Jascayd. Also, unless Jascayd slows down the IPF decline I dont know of any added benefit. I would be reluctant to pick up significant self insurance costs associated with Jascayd unless there was definite advantage. All input is welcome on this issue. Thank you.
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Will be picking up Jascayd tomorrow so can’t address side effect issues. My pulmonologist prescribed it and the CVS specialty pharmacy called me to say it was approved. I am on Medicare so I have a $2100.00 out of pocket co-pay for all medications. It is apparently in the formulary for my insurance. I’m also on Esbriet that cost me $1800.00 in January. I will pay $298.67 for Jascayd tomorrow to meet the rest of the co-pay for the year. My understanding is that Jascayd helps as an anti-inflammatory that will slow down the bodies response to making fibrotic material. Esbriet interrupts and slows down the formation of fibrotic material.
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