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OFEV Thoughts
I have been on OFEV 4+ years and it has been a rollercoaster ride but it is disheartening when I see posts from those who are frightened about even starting the drug. I was formally diagnosed a little more than 5 years ago but in reviewing past MRI results it was noted over 10 years ago but the symptoms were so minor that the IPF was overshadowed by another condition, cancer, which was taken care of with surgery. However the shortness of breath became a problem and I consulted a pulmonologist who confirmed the disease had progressed but held off on prescribing OFEV. This was a mistake as the disease progressed rapidly over the next year and I lost lung function that would never be recovered. I started OFEV 150 mg twice a day and, as many people have noted, there were no serious side effect for the first couple of months but then they started full force. Diarrhea so bad that I didn’t feel comfortable leaving the house as well as bloating and abdominal pain. The Dr. was sympathetic but there was not a lot he could offer besides dropping the morning dose to 100 mg. My decision making at that point was to either stop OFEV and let the disease progress, which given its rapid progression would have killed me in a year or two, or continue the treatment and find a diet and OTC medication protocol that would reduce the side effects, which I did. My reasoning was that I had grandkids who I wanted to see grow up, grown children who would still benefit from having me around, and a wife who loved me and wanted me to stick around as well. If it had been just me I would possibly have not stuck it out but I felt that it was not my decision alone so I continued with the drug and it has worked. My disease has not progressed at all and in some aspects has improved, probably due to frequent walks, so OFEV works. I currently take loperamide HCL 2 mg (generic Imodium] twice a day as well as a couple of heaping teaspoons of Metamucil and that has reduced the GI symptoms substantially. I still have occasional diarrhea but not every day, I still have 3 or 4 bowel movements daily but no cramping, and some minor bloating. I can travel , 4+ hour plane trips and long road trips, skipping a dose or two of OFEV before travel. I now look on OFEV as a manageable, if serious, inconvenience. It’s not as bad as chemo or a bone marrow transplant and much better than the year I spent in Vietnam with its 50+ years of side effects.
My message is don’t listen to the OFEV or esbriet horror stories when deciding whether or not to start treatment. Take the drugs, you will die much sooner without treatment, nothing else has been proven to work. Give it your very best effort and try every protocol that you can weather the side effects: immodium, Metamucil, raisin bread, or sardines because other people are counting on you to be there for them.
Just my two cents worth. Good luck, life is mostly worth sticking around for.
Paul
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9 Replies
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I totally agree with you. I was diagnosed almost 3 years ago and with family history it was suggested that I start OFEV although IPF wasn’t that bad. I started 150 mg and for 2 years had diarrhea. I tried diets and other symptoms. I switched to 100 MG 5 months ago and very rarely use imodium and I can now do 10 hours between dosages. My last checkup showed no changes from previous checkup.
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I agree with Paul; I think the key for me in taking the Ofev, is making sure to take it AFTER eating protein. Ofev side effects completely disappeared for me when taking the drug 12 hrs apart with at least 14gms of protein. I’m not a morning eater and struggled with that but now I have about 1/2 c of cottage cheese or peanut butter toast and the Ofev goes with it.
If you’re good to go for breakfast food, get your protein with eggs, meat, cheese and hopefully you’ll have found a solution.
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It’s been a year or so for me. I was at150 twice a day but was reduced to 1 a day several months ago. I agree with your view. I found increasing protein intake helped.
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GO for it, friends!
Hello!
I am on Ofev. at first I was ill a lot, (vomit, diarrhea and cramping) but I have focused on different dietary things and now I have very few symptoms. I definitely found that higher protein helps. For me breakfast is HB egg, on bread with cheese (I know, dairy, but it works for me) and sometimes add salmon. I often have a turkey sandwich or similar with the PM dose.
I also have PRN Bentyl (Dicyclomine) which helps me this is an anti-spasmotic, my worst symptoms were abdominal cramping -OK plus vomiting or diarrhea. I use it maybe once or twice a month. But with boosting protein I rarely get symptoms. I snack on nuts and turkey or chicken also just to keep that protein going. I eat yogurt, and frozen yogurt when I want a treat.
I have to add that I have also noticed that STRESS plays a part. Try to avoid stress — I know that is almost not funny?!?? UGH.
Good luck!
Fear not, just try different dietary things. I was really determined to be on this, so if get sick I look at what I did and adjust my plan.
YES: I now have one cup of coffee in the morning! Before I ate high protein I could not do this.
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I was on Ofev 150 mg for the first 15 months with no problems at all. Then at that point diarrhea set in and couldn’t be controlled. Finally with pulmonologist recommendation, switched to Ofev 100 mg. Take it now at breakfast and dinner; don’t worry about proteins. No side effects. Apparently there are no clinical studies showing the 100 mg level to be less effective than the 150 mg level.
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You might be lucky if you can hang on for a few more years. There two new treatments on the Horizon. WMP-4 and CMR-316. CMR-316 is finished with phase 1a ans is now in 1b. WMP-4 is not in phase 1 yest. In phase 1a, CMR-316 was shown to reverse the IPF by stimulating the stem cells that naturally heal lung tissue. I have taken the initiative and have written a letter to the NIH. Her is a copy of that letter.
Dying a horrible death by slow suffocation
I am writing this letter on behalf of the about 100,000 Americans who are suffering with Idiopathic Pulmonary Fibrosis and the approximately 1,532,900 in the rest of the world who are dying of a slow but sure death by suffocation.
IPF is considered a rare, sporadic disease for which there is currently no cure available. The disease (IPF) is a result of the body’s inability to make new alveoli to replace dying lung cells. This results in scaring of the lung tissue starting at the bottom of the lung and working its way over time to the top filling the lung with the scar tissue until the patient suffocates. Usually, the time it takes from diagnosis to suffocation of the patient is on average about three to five years. These unlucky people are suffering, both physically and mentally, while waiting for a cure to come along. There are some current and upcoming drugs that slow down the formation of new scar tissue in the lung. These agents, include both pirfenidone and nintedanib they just delay the inevitable and both have terrible side effects leading many patients to discontinuing the therapy.
There is a new product being tested at this very time. It is CMR-316, a small molecule developed at the Scrips institute. This drug, which stimulates the lungs’ own stem cells to make new alveoli is novel. Clinical trial phase 1 has already been completed. The costs of all the research to this point have been borne by not-for-profit organizations. CMR-316 has already shown itself to be safe and effective. There is a very good chance that it will reverse the effects of IPF and possibly other fibrotic diseases as well as COPD. The NIH should put this drug as high as possible on the priority list. With the backing of the NIH CMR-316 could be available quicker than having non-profits taking time to raise the funds to get it through the necessary trials to get it through the FDA. Getting CMR-316 through the FDA quickly would give the Idiopathic Pulmonary Fibrosis patients hope and they could look forward to having a normal life instead of dying a slow death by tortuous suffocation.
Another molecule, BMP-4 has shown to reverse IPF in animal studies. BMP-4 is the protein that is used by embryos to create new lung tissue. In animal studies the product was nebulized for direct to the lung administration. This product reversed the IPF as did the CMR-316. Both products use the human body’s natural systems to cure the disease. I believe that CMR-316 is further along in development than BMP-4 and should be given fast track priority over all other drugs for the treatment of IPF.
Respectfully,
R. Byron Jeffrey
The mass of the hopeless needs to be changed to the mass of the hopeful.
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Byron,
Your letter to NIH is right on target. It is well written and research cited indicates what this organization should use any and all resources to support. Those of us with IPF can take Pirfenidone or Ninetedanib but may suffer horrendous side effects , particularly if we already have serious gastro issues or liver problems. These drugs may slow the progression of the disease but will not cure it.
Based on the clinical research cited by Byron about CMR -316 and a potential to reverse the damage to the lungs we should all join in the request to NIH to make CMR316 a priority for the FDA to move ahead with studies to gain approval.
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First of all Thank You for your service. I also served in that era but fortunately I didnt have to serve in the “Nam like my friends. I have been on OFEV for about 5 years now. Early on I had to drop the dosage to 100 mg because of the problems you mentioned. I started loading up two pieces of toast with peanut butter to get more morning protein. It worked for the a.m. and early afternoon. In the evening I made sure I had a good serving of protein (chicken or beef) before I took my second dose of OFEV. I have been moved back up to the 150 mg dose for quite a while now with minimal side effects. When I travel I skip the OFEV for a whole day. I might skip it for several days if I will be out on a tour or something not handy to a restroom. My numbers have been steady for the last 3 years so I am very thankful for OFEV.
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Thanks! I’m happy that you were able to avoid Vietnam. You didn’t miss a thing… Thanks also for responding with your OFEV protocol, it may very well help someone and keep them on the medication.
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