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Jascayd and Ofev
I was recently prescribed Jascayd and have been on Ofev for two years. I’m trying to decide if I should take both drugs at the same time or stagger. For those that have been on both, what are your thoughts and experience? I don’t tolerate Ofev very well but am willing to deal with the side effects.
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39 Replies
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I’ve been on pirfenidone for 6 years And my Pulmonary doctor Is put me in for jascayd. It has not been approved yet but she wants me to take my old medication plus 18 mg of jasayd Together.
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Thank you.
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Didn’t your doctor give you directions on how to take it and with what?
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He said either way was fine.
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I’ve been on Ofev 150mg for 3 years. My doctor started me on 9mg Jascayd for 3 weeks and now on 18mg for 2 weeks, all on top of Ofev 150mg. My doctor said to take the pills together or apart, but keep each at 12 hour intervals…. I’m on 6:30 am & pm. I’ve had daily diarrhea the entire time on Ofev; adding Jascayd 18mg has definitely not worsened my diarrhea experience vs Ofev alone.
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That’s what I’m doing as well and having the same experience you are. Thanks for your response.
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i have been on JAYSCAD for just one week, i tried ofev a couple of years back but my diarreah was impossible. i have had no effect at all on JAYSCAD so far, it seems more stomach acceptable.
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I wonder how many folks that are on Jascayd are taking OFEV as well. I am on Jascayd 18 mg twice daily and stopped my OFEV 300mg the day I started Jascayd-Oct. 18. I had seen some test results that indicated a very slight increased benefit in taking Jascayd only. Now I am not so sure. Seeing my expert pulmanologist tomorrow and am wondering if I should resume the Ofev. I had awful bathroom issues when on OFEV and am easily managing an extremely slight bit of constipation on the Jascayd. I am considering re-starting the OFEV at 1/2 the dose that I used to take Once daily a 150mg pill. I have a few of these left over and am wondering if anyone is on this regimen. 2 18mg Jascayd plus 1 150 OFEV.
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Do all of you on Jayscad have Idiopathic ILD? Thanks in advance for responding.
JZ
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My husband is on ofev and Jascayd for fibrotic Hypersensitivity Pneumonitis. He was actually part of the fibroneer study.
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I do.
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I have been on Jascayde now for a month. I take it with 100 mg Ofev. I take them together 12 hours apart. Have had some diarrhea but controllable.
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I have been in Esbriet for 9 months now starting Jascayd 18 Mgs twice a day. But Queazy with Esbriet have to eat with it.. hope Jascayd helps.
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Good to hear Jascayd helps with stomach problems. Someone on this forum mentioned that stomach issues with Esbriet are made worse with raw vegetables (salads) and dairy, which I found to be true.
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I have been on OFEV 150 mg twice/day for 1 year. Was previously on pirfenidone for 2 years but took a downturn so switched. Three weeks ago, I added 9mg of Jascayd and take at the same time as the OFEV. Have not noticed any difference on side effects but am one of the lucky ones that my side effects were minimal (some diarrhea) with OFEV. Don’t know yet if Jascayd is helping as my next tests aren’t until January. I might add a friend with IPF suggested I try using Carob Powder to battle the diarrhea. I now start every morning with a glass of Almond milk mixing in 1 tablespoon of Carob Powder. The diarrhea I had has disappeared as it did for my friend.
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Thank your for the suggestion. How much carob powder do you use?
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I take one table spoon mixed in my protein drink.
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I also use (1) tablespoon. In addition to the carob powder, I also put in (1) tablespoon of carnation instant breakfast. Not that it helps with the diarrhea, but I enjoy the taste. I use almond milk as I found using regular milk with lactose was not good. Good luck as the carob powder erased any fear I had of being in public and having an accident.
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I tried the Carob powder for a couple of days and believe it started to help. Unfortunately, I also got a noise bleed on the third day which is not typical for me. I looked up Carob powder interaction with blood thinners and sure enough there is one. I’m glad it works for you!!
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Does anyone using Jascayd get assistance for this med. I am a senior on Medicare and was told that because of Medicare I am not a candidate.My pulmonologist just prescribed this med and I doubt if I can afford it.Any information would be appreciated.
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Like your screen name…. Have you tried https://www.healthwellfoundation.org/ ? They provide some grant money for Jascayd. Not full coverage but helps. And Jascayd/BI Careconnect4me program provides additional resource listings.
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Go to Behringer Ingelheim and inquire about the OPEN DOORS Patient Support Program. They quickly set me up at no cost….at least for now. You will need to have your Doctor assist you as well
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Hello,
I use WellCare with Medicare and they have been absolutely awesome and have paid for OFEV 100 and Jascayde as I take them both together.
Check them out in the websitewellcare.com /PDP
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Started Jascayd 4 weeks ago. 18mg 2X day. My Dr had me stop OFEV and start Jascayd. The GI issues have been somewhat better but not completely gone. I do have IPF and had been taking OFEV for 6 years. Going for my PFT’s and walking tests in 3 months and will see if any changes.
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Anyone try Ofev, Jascdys andTyvaso all at the same time?
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Has anyone tried to get Jascayd thru the V.A.?
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I meet with my VA primary care doctor in January 2026. I was being placed on Jascayd through a non VA hospital and I asked him to check and see if VA could fill the prescription like they are doing with other prescriptions that I have. He looked up Jascayd and it didn’t show up in the VA pharmacy system at all. He said because it was recently approved it may have taken more time for The VA to make it available. He said that he would continue to check on the availability.
I have a $50 per month copay with Medicare and TriCare 4 life. This is the only copay I have. Previously, I was paying $30 per month copay for pirfenidone until I discontinued it because of not being able to tolerate the side effects. If you find out more about the VA please post. I will do the same.
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I was on OFEV. I tried adding Tyvaso a month ago. It was a nebulizer every 4 hours. With each treatment my IO2 sat declined by 4 percent for 2-3 hours. Also had dizziness thru the day. Stopped after a week. I have to say each person may react differently
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I was on Ofev 150 mg for 15 months when big time diarrhea hit. Switched to Ofev 100 mg and have been fine. No problems. My pulmonologist has now prescribed Jascayd for me as well (18 mg). So far only a mild gas problem taking them both but Gas-X keeps that well under control. No sure how long he’ll recommend I take both.
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Been on Ofev 100mg 2x for about 6 years now. 1 year ago I participated in a trial for Tyvaso for IPF. Finished the year and since it was an open ended trial, they now have me on the real Tyvaso. ( Quite sure i had the placebo the whole year. No side-effects. ) Cough with every treatment. Interesting to note that one person here said their oxygen level went down with Tyvaso. I have been having problems with lower o2. Too many things changing in short order. Cardiologist prescribed Metropolol for heart condition about the same time and had to stop that.
Merry Christmas to ALL 🌲
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Merry Christmas Vance!
Are you noticing any other side effects from the Tyvaso?
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Hi, I was taking Ofev for years. It got to the point where I could take it for 2 weeks, and then I’d have to stop for 2 weeks because I just had a constant flow of diarrhea. Unfortunately you really can’t take anything for the diarrhea because the medication to stop the diarrhea in the US has got a additive called atropine which can mess really badly with your heart and the over-the-counter Imodium can’t be taken very long or it can actually kill you. I got started on Jascayd the day it came out in the US. I have no liquid diarrhea but I do have mushy poop which in my opinion is not as bad. But the good news is I can take a couple over the counter Imodium before I go to work and I’m good for 3 days, and I work 12-hour shifts at night as a nurse. The Ofev kept my IPF to 2 or 3 small spots and I was diagnosed in 2015, it really didn’t move or get worse for over a decade, and I’m hoping this works and that I don’t have to go back to ofev. I feel fine and my sats are 97, 98, during the day. Hopefully it will work as well as Ofev. I will see my pulmonologist at USC the middle of next month. I am so grateful for Jascayd!!!!
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300mg Ofev for 3 absolutely miserable years. Started Jascayd and ALL the bathroom issues are GONE.
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Is Medicare covering any of the cost of Jayscard?
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I was on Ofev for about a year and dropped it because of the side effects. I was impressed by the effort the company was putting into Jascayd and started it. Regrettable the backpain and Covid 19 side effects practically immobilized me. I have discontinued it. A disappointment.
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Very bad information about Imodium containing atropine and having the potential to kill you. Lomotil is an entirely different drug that does in fact contain atropine where as Imodium is the brand name for the drug loperamide and does NOT contain atropine and is completely safe for long term usage. I have been on it, 2 mg twice a day, for years with no side effects other than helping me manage ofev.
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Thank you so much for this info!
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Is Medicare covering any of the cost of Jayscard, are there any copay assistance programs out there for patients on Medicare.
Since regular copay program by Jascayd thru CareConnect4Me are for commercial health insurance only. They state: “Patients who meet the eligibility criteria may pay as little as $0/month for their JASCAYD prescription; per prescription savings may
vary.”Their Eligibility States: “You must have commercial health insurance that covers part
but not all of the cost of JASCAYD. You may not be receiving reimbursement in whole or in part under any Federal, state or
government-funded insurance programs (for example, Medicare, Medicare Advantage, Medicaid, Medigap, TRICARE, Department of
Defense, Veterans Affairs programs or state pharmaceutical assistance programs). If at any time you begin receiving prescription drug
coverage under any such federal, state, or government-funded healthcare program, you will no longer be able to use the Copay
Program and you must call [1-844-550-5683] to stop participation. The Copay Program is not valid for JASCAYD that is eligible to be
reimbursed in its entirety by private insurance plans or other programs. It is not available for cash paying and uninsured patients.”I am still researching this and will keep posting updates, but if anyone has any information please post.
It will help all of us 🙂
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