Ofev and Jascayd together

[Charlene]

Thank you for starting this thread Alam! I am also very curious about patient experiences with Jascayd in general, plus taking it with OFEV. I look forward to folks sharing their experience.

Char.

[Poppa]

Been taking JASCAYD and Ofev 100mg together now for 3 weeks. Big Side Effect on day 1 but ok since.

[Paul75]

I have been part of the study for about 18 months and have been taking ofev the entire time. I have not noticed any difference between my time taking ofev on its own and the time taking it in conjunction with jascayd. I have learned to manage the ofev side effects by taking loperamide 2 mg twice a day along with 2 tablespoons of Metamucil first thing in the morning. My bowels are active in the morning but no diarrhea nor any GI pain.

[chuckgalloway]

Paul,

When you say you didn’t notice differences between Ofev only or along with Jascayd do mean difference in the side effects or in the progression of the fibrosis or both? Are you sure you didn’t have the placebo during the trial?

Regards

Chuck

[Paul75]

I noticed no difference in the side effects. Once the phase 2 trial was complete they told me that I was not on a placebo but was on the 9 mg dose. We tried the 18 mg but there were some side effects that I didn’t care for, different from Ofev side effects, so I dropped back to the 9 mg dosage. I just met with the study team today for a pft and bloodwork and I asked for a comparison with my fvc of 16 months ago and there essentially no change so for me it has kept the disease from progressing. I count that as a win and plan on continuing with the drug after the trial is over, probably June 2026.

[Brenda]

Hi, Brenda Colvin. I am taking Ofev 100mg 2 times daily plus Jascayde. Been on Jascayde 3 weeks. So far not bad. A little diarrhea but nothing I can’t deal with. Hoping it doesn’t get any worse.

[JPocean77]

I was diagnosed with Familial IPF nearly 6 years ago. I lost my mother and both my brothers to this disease.I have been in the clinical trial for Jascayd for the past few years. I stopped taking Ofev long ago because of the side effects. My stomach could not take it. I have had no issues at all with Jascayd. No side effects. Along with Jascayd I have also been doing RSO ( Rick Simpson oil) for the last several years. It’s pure THC. There is a documentary out there called “Weed The People”. It’s all about the oil and the incredible results it’s had with cancer patients. I personally believe in the power of THC. I have been sober for over 35 yrs. I watched most of my family lose their battle with this disease. After being diagnosed I was willing to do ANYTHING to beat this. A friend suggested RSO and I’ve used it ever since. I’m constantly asked if it’s helping. My answer is…”I have no idea.” What I do know is that combined with Jascayd, I’m doing fantastic. I have never used oxygen and am still hiking, biking, and in the gym a few days a week.

[harvey]

I’ve been taking pirfenidone For 6 years at 801 mg per day now my doctor Wants to add 18 mg jasscaid to the mix. She is trying to get the okmy insurance company but they denied it twice so far we’ll keep on trying she says it should be a big game changer if we get this. I’ll let everybody know if I get it and there’s any side effects beyond what I already have.

[MarkO]

I thought Jascayd was a replacement for Ofev with less side effects?