bruce-hawn
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I am currently participating in a phase II trial of NAC. I was told that there was an older study that tried 3 different drugs. Some people got a cocktail of all three, some got only one. In any event, the trial did not go well at all and was stopped. However, review of the results for the NAC portion indicated that it might help people with a certain genetic trait. A trait that only 25% of the population has. The study I am in is only those who have the trait. I was also told that that there is some indication that NAC could be harmful to people who don’t have the trait. So if you decide to take be cognizant of that fact and be careful.
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I asked that very question of my pulmonologist and his response was “if you are still testing positive on a home antigen test, then there is enough virus load in your body for you to be contagious”.
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I am 62 and have had IPF for a while now. I caught Covid not that long ago and believe I caught one of the milder forms, such as Omnicron. My biggest symptoms were fatigue, dizziness and head congestion. Immediately started on Paxlovid and by the end felt a lot better. Still got dizzy and was still tired a lot. Fast forward about 6 weeks and I believe that I am back to where I was pre-covid, without significant adverse effects.
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Can certainly understand your freaking out. I am sure all of us can. Colin is right, everyone is different. I am 62 and while I only discovered it 2.5 years ago, turns out a 2009 CT Scan revealed I had IPF back then. 13 years and while I don’t have anywhere close to your FEV, I feel fortunate in that I only have to be on oxygen at higher elevations, and can still do most things I like. Everyone is different. The other thing to be aware of is that Covid causes a form of pulmonary fibrosis, so there is a lot of research being done world wide that will end up benefiting the IPF community. Keep running your 8 minute miles and enjoy life while you can. I pray, your pulmonologist has to wait a very long time.
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I have a seven day pill box that I fill that has morning and evening compartments for each day, which I leave on the kitchen counter. After I take my morning dose I leave the lid for the morning compartment open, which signifies that I have taken my morning dose. When it is time to take my evening dose, I close the morning compartment and leave the evening compartment open. Next morning, I close the evening compartment from the day before when I take my medicine, and repeat that process. I can look across the room at the box and be able to tell if I took or not.
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For those that are interested, I got my third shot (Moderna) 6 weeks ago, have had no issues.
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I had a very thorough Pulmonolgist. A Broncoscopy revealed I had a very high white blood cell count, This meant that I could have had hypersensitivity pneumonitis (“HP”), which mimics IPF’s honeycombing pattern you see in CT scans. I was put on IV prednisone 1,000 mg per day for 3 days in a row every four weeks for 3 months. At the end of which I was given a lung function test to see if I had improved function. A 15% improvement (minimum) would have indicated HP. Unfortunately for me there was very little improvement., which confirmed my IPF diagnosis. As for the effects, it knocked me for a loop. Within 24 hours of finishing each round, I crashed for 3 days and got back to mostly normal on the 4th day. I believe it aggravated osteonecrosis I had in left shoulder. Tolerable, but now I have pain where I had none. Other than that, I have not suffered any other adverse reactions (to my knowledge). The negative result ended my experience with prednisone.
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I had a very thorough Pulmonolgist. A Broncoscopy revealed I had a very high white blood cell count, This meant that I could have had hypersensitivity pneumonitis (“HP”), which mimics IPF’s honeycombing pattern you see in CT scans. I was put on IV prednisone 1,000 mg per day for 3 days in a row every four weeks for 3 months. At the end of which I was given a lung function test to see if I had improved function. A 15% improvement (minimum) would have indicated HP. Unfortunately for me there was very little improvement., which confirmed my IPF diagnosis. As for the effects, it knocked me for a loop. Within 24 hours of finishing each round, I crashed for 3 days and got back to mostly normal on the 4th day. I believe it aggravated osteonecrosis I had in left shoulder. Tolerable, but now I have pain where I had none. Other than that, I have not suffered any other adverse reactions (to my knowledge).
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My mother & grandmother both died of IPF. I am 3rd generation with IPF. I paid $3,000 to get genetic testing. Results were something they had not seen and so I have to get my telomeres tested if short most likely means familial an if not they will stick with inconclusive. Once I get my telomeres tested if they are short, then they can test my kids. Their tests at that point will only cost $100 each.
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My understanding is that you lose your eligibility to participate in their co-pay program, once you go from private insurance to Medicare. Have to be privately insured. Not sure why, but am sure that is one of the ways, maybe only way, you lose eligibility for the OFEV copay program, other than cancellation of the entire program.
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I was on on Esbriet and for first 2 months no problem. After that hyper sensitivity to ANY sun exposure. Finger tips & knuckles cracked open, rash on skin. Horrible itching. Docs took me off & put me on OFEV. Much better no such issues.
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I have been taking Green Tea Extract for about a year now. My thought is that it can only help. I have lost weight, but I am overweight and have been trying to lose weight. I do not believe that the Green Tea Extract has assisted in my weight loss, unless it somehow helps increases will power to cheat on diet or sticking with regular exercise. I have been on diets before I was diagnosed with IPF, and before I started taking the extract and do not believe that I am losing weight at an increased rate.
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I am a 60 year old and recently switched from Esbriet to OFEV, had horrible skin issues with Esbriet. I was extremely nervous about OFEV because my Esbriet welcome package contained a bottle of sunscreen, and that didn’t work out so well for me. OFEV’s welcome kit with Imodium did scare me. In talking to the various people with OFEV, they all stressed that the most important thing is to try to take the doses as close as possible to 12 hours apart and to skip if you miss by more than an hour. (double check with your doctor before you skip). I asked the educator provided about how much to eat and he told me a story of someone that had issues and when asked what they ate with last dose, the answer was half a cookie. Has to be more than that. I have been very strict on taking OFEV as close to 12 hours apart as I can manage; and taking the OFEV midway through my meal. I have had a fair amount of success. Do get some diarrhea, but it has been tolerable. I get it when I push my rule of taking my dose no more than 1 hour from the 12 hours of my last dose. I am sure you were told about the 12 hour rule to help minimize side effects, but am sending this in case you missed it.
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I did 3 sessions this May (was scheduled for 30) for bleeding issues caused by radiation treatment for prostate cancer. My lungs felt raw after 3 session. I quit. Significant drop in lung function followed over the next several months. I can’t say for sure that hyperbaric O2 treatment caused the drop, but believe that to be the case, as I started having issues almost immediately thereafter. FVC %predicted was 83% in April and is now 70%. DLCO in April was 62% predicted and is now 50%. I had been stable for a long time before that. Be careful.
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You are a good person, Katie. Six years after your loss and after a slight break (very understandable break) you’re back plugging away. I like your profile background picture. I train border collies in sheep herding for a hobby, one I am grateful I can still do, although, no more high-altitude sheep dog trials. Your picture reminds me of prime UK sheep country (aka border collie country).
I was diagnosed at 59 (2020) as a third generation IPF’r. Your perseverance is admirable. Your dad must have been an incredible person. You and your mother as well. IPF can be extremely tough on family members. Thank you for caring.
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Good Advice. My first pulmonologist wasn’t the greatest. The Second, said wait, let’s first make sure it is IPF. In particular he wanted to rule out Hypersensitivity Pneumonitis, which is something that mimics IPF.
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Went back and looked, saying to myself, I know I am not crazy. Now that I think about my conversation with the pharmacist, I whipped out my phone and did some quick research, and showed him the search result below without reading all of it. Both the Pharmacist and I must have seen “OFEV a medicine that affects your immune system . . .”. and stopped there Now that I have actually read it, I realize I was mistaken, the post is talking about interactions between OFEV and medicines that “affect your immune system”. That said, my thought is still to get the 3rd shot however you can. Thanks for catching my mistake, as I do want to be accurate.
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I argued with my pharmacist. I am on OFEV and pointed to language in the accompanying drug literature that says OFEV affects the immune system. Pharmacist said that was good enough for him. I know lots of people, who just went and got one no questions asked. Have heard of lots of people lying and getting one as well. Seems that the booster shot debate has become somewhat politicized. I strongly suspect that the back and forth from booster at 8 months to booster at 6 months and back (with not enough science to warrant boosters thrown in between) was based more on politics than science. My guess that the CDC internal debate went something like this, 8 months we need a booster for sure, but 6 months is even better, but the US has pledged to vaccinate the world, so to save on vaccines, let’s push it back to 8, 8 is good enough. I told my pulmonologist that I got the booster and his response was GOOD!
None of us want to be able to answer the question first posed. I don’t want to hear of any more of you being able to answer the question. Best way to avoid having the capability of answering the question is to get the booster shot asap, rather than wait for CDC to say oh yeah, IPF qualifies, sorry about that. Wish all of you the best of luck.
P.S. I am NOT a Dr., this is a layman’s opinion, so please consult your medical professional.
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I started off on Esbriet. Had a real tough time with sun issues. OFEV, I have tolerated well. If you go the OFEV route, the closer you stick to 12 hours apart the better. Wish you the best.
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Jerry, do you have contact information you can share to contact the group that is giving you the umbilical stem cell injections?