- This topic has 18 replies, 16 voices, and was last updated 1 year, 5 months ago by Jeff Taylor-Jackson.
November 30, 2021 at 11:35 am #30527Nigel WrightParticipant
There is a lot of exciting news around new treatments to repair the scar tissue but when will these treatments reach the stage when we can actually use them and which one is leading the race
I know the scientists have a long route to travel between the basic modelling – then tests on mice- test for the best dose and toxicity – basic trials on healthy humans – analysis of results – 1st trial on patents – analysis of results – 2nd – 3rd trials with larger groups – analysis of results – Approval from the medical authorities around the world Agreement on the price structure to pay for all this work We saw from the covid research the approvals can move fast when required.
Has anyone constructed a league table of all these potential treatments against time to approval It if yes which one is leading the pack
November 30, 2021 at 2:20 pm #30528Michael FuglerParticipant
That is a great question, you have me on the edge of my seat in anticipation of a reliable reply and most important a timeline. I wish I could provide more information than support!
December 7, 2021 at 4:25 pm #30564J L LaBrackParticipant
I’m dealing with IPF and have been 3.5 years with no hope of getting an effective treatment, let alone a cure. This news is a double-edged sword. On one hand, it gives all of us IPFers hope for effective treatment and possible cure, but doubtful that we’ll see the day when the possible cure will be available–due to the massive bureaucratic system and big pharma’s influence now if effect in the U.S. What do we have to lose by cutting all the red tape? As it is, we’re going to die soon anyway…
November 30, 2021 at 2:23 pm #30529Judy FraserParticipant
Oh somebody, please answer this. Or tell us how to get into one of the trials.
November 30, 2021 at 2:49 pm #30534ShafiParticipant
I read those reports and get exited. But no further details some one with inside knowledge can answer.
November 30, 2021 at 2:51 pm #30535Curt StricklandParticipant
I can’t answer that, but I am wondering about stem cell therapy? Any information on that?
December 1, 2021 at 12:33 am #30539Christie PatientParticipant
Hi @curtstrickland there has been some discussion on stem cell therapy in the forum in the last year. Try using the search bar in the upper right of the page to see relevant posts and join the discussion 🙂
As for the scar tissue treatment/trials, I am also eagerly awaiting a post from someone who knows the details. I will look into it through our clinical program and report back if I find anything.
December 1, 2021 at 12:37 am #30540Christie PatientParticipant
I am not sure if there are any open clinical trials for scar treatment, but if any of you are interested in joining clinical trials, BioNews, the company that hosts this website, has a clinical branch that aims to connect patients with researchers. I have pasted the following from their website if you’d like to learn more:
“Companies developing new treatments often have contact information available on their websites that interested participants can use to find out how to be included in a trial. Medical centers conducting clinical trials may also have contact information. Trials conducted in the United States also are registered with clinicaltrials.gov, and contact and location information is typically listed there on the specific trials’ webpages. CenterWatch is another site that helps connect people with clinical trials.
In addition, as part of our mission to empower, inspire, and champion the patient voice and engage, inform, and connect the global rare disease community, we at BioNews partner with clinical trials organizations to help get the word out about opportunities to participate in research studies related to our rare and chronic disease patient communities. We post about relevant trial opportunities via a variety of channels, including our:
Surveys aimed at gauging interest about clinical trial participation
Interested in participating in research opportunities? Please email [email protected] to receive information about relevant clinical trials that may be a fit.”
December 2, 2021 at 10:23 am #30546PatParticipant
As a librarian i was keen to inform myself about research when i was first diagnosed. I have a list of various studies that started into fibrosis, i was hopeful, but over time i’ve become aware that very few progress beyond first studies. The world collaborative working on Covid showed what is possible when global efforts are put into research, sadly this is an exception. I now don’t expect there to be a solution to fibrosis whilst i’m alive.
December 2, 2021 at 4:17 pm #30551PeteParticipant
I agree Pat, I don’t see progress being made in humans, only in mice. So from a mouse study to geting approval I would estimate at least 5 years. And most of the progress that looks good in mice do not make it past Phase 2 of a trial. Trials take years to complete and to analize the data. Then FDA takes years to approve. Research seems to be still concerned with studying meds to slow the progression down with less side effects as the meds currently approved and not concentrating on repairing scarring. Its been over 10 years since Ofev and Esbriet did trials and research has not been able to find any better meds yet. So maybe in five years they may have a new med costing 20 grand a month. I have just been seeing a lot a false hope. If PF got the attention world wide that Covid got they could come up with something sooner but I don’t see that happening. These are my thoughts and I do hope I am wrong. A little history on Esbriet is it was approved to use in Japan in 2008, approved in Europe in 2011 and it did not get approved in the U.S. until 2014,
December 7, 2021 at 2:22 pm #30555
Pete, Pulmonary Fibrosis has been an unfortunate complication that some COVID patients, particularly those who have been on a ventilator, have experienced. Perhaps COVID funding will be utilized to pursue research into curative PT medications. We can only hope.
December 2, 2021 at 9:17 pm #30553Steve DragooParticipant
Thank you for sharing the web link!
December 7, 2021 at 3:26 pm #30558LawrenceParticipant
Being as I’m eighty years old I don’t hold any hope for this medicine. Three years ago I was diagnosed with IPF, 35% reduced lung capacity and given a 5 year life expectancy. I was given a prescription of 300mg Ofev and the side effects were unbearable. The pomologist reduced the Ofev to 100mg and I’m tolerating that ok although the price went up a thousand dollars a month for the lighter dosage. So far I’m not on oxygen and lead an extremely active life having to sit down and “recharge” frequently. I exercise quite heavily and it seems to help. Check with your doctor to be sure your heart will tolerate exercise.
I’m convinced there will be no scaring treatment for me but I hope and pray that there will be a medication developed for you younger folks. God has blessed me with a full and happy life. Now, having come down with this disease in my twilight years, I have no complaints. Best wishes to all and God bless.
December 9, 2021 at 2:37 pm #30586Duncan FowlerParticipant
Lawrence, I have you beat at 82!
I am still looking forward to a scar treatment in my lifetime.
I was diagnosed in 10/17 and have been taking OFEV 150’s and was getting tired of dealing with the side effects.
Recently, I was put on 100’s. I had a good supply of the 150’s so I started taking those in the mornings and the 100’s at night. Been doing that for 2 weeks now and I am not really experiencing any side effects. If this continues I will work with my Doc and see if I can continue after I run out of my supply of the 150’s
There is always hope and who knows, things might get better as far as the testing.
I do feel positive about that!
(And besides. I have a Granddaughter in the 9th grade who is truly an excellent soccer player. I want to be able to see her in the Olympics!)
December 7, 2021 at 5:41 pm #30565Marilyn CellucciParticipant
God bless you, Lawrence.
December 7, 2021 at 10:56 pm #30576Manzurul KhanParticipant
Lawrence, you inspire me to be even more active. I am 68 and try to be active throughout the day. I play tennis 1-2 times a week and walk 10k steps daily. I was diagnosed a year ago. I will know soon if my condition was worsened in which case I will start taking medicine. So far, I have resisted the idea due to side effects which are well known. I pray you and I both get to see the cure. Granted, if not IPF, another disease will bring an end of my life. No regrets here either as I got to experience the joys of life. Still working full time and more than 40 hours a week.
December 8, 2021 at 4:28 pm #30581Jerry GenesioParticipant
I’m with you, Lawrence, 110%. I was diagnosed 2 years ago and I declined the Esbriet option due to potential side effects. I have another condition that requires several meds and I didn’t want to cause compatibility complications. I’m not eligible for Ofev. But, like you, I’ve enjoyed a full and very active life. I am now 83 and living very happily and comfortably with a woman I love deeply and completely. I want to wring every ounce of happiness out of every moment I have left.
December 9, 2021 at 3:05 pm #30592Judy FraserParticipant
Well, I turn 82 next month and plan to live with my loving husband at least 10 more years. So I’m hoping for a cure/reversal of the scarring. I was diagnosed 2 1/2 years ago and am not taking any of the meds. My latest CT scan last week showed no appreciable progression and very little since my diagnosis.
I’m living life to the fullest, enjoying most every day, and hope to keep doing that for a long time. I am on oxygen most days and very happy with the days that I can go without. (I use the Wellue thumb oximeter with the trigger point set to 90 percent. So when the O2 drops, I first try deep breathing to bring the level up, and if that doesn’t work, on goes the O2.) Several friends have told me they are impressed with the grace with which I handle my disability.
I’m much more careful about Covid than most people I know. I sometimes am the only person in the room wearing a mask if I have any question about others’ vaccination status (and really appreciate my group of friends who I know are also being very careful).
All we can do is live our lives and keep hoping for a cure. My 2 cents.
December 9, 2021 at 3:08 pm #30593
Judy, you are blessed to be able to live life to the fullest. So glad your PF is not progressing. Keep living life to the fullest.
December 14, 2021 at 2:59 pm #30606Jerry GenesioParticipant
Judy, I can relate to your situation. My wife and I are both 83. We were high school sweethearts in the 1950s but went separate ways. We both married others and raised families, and nearly eight years ago we reconnected. Our former spouses had died and we spent 18 months getting reacquainted, though clearly, we had held each other in our respective hearts for more than sixty years. Six years ago we were married and have never been happier. I was diagnosed with IPF two years ago (FPF I believe: familial rather idiopathic because my mother had exactly the same symptoms at the same age). I declined treatment with Esbriet because I’ve been on heart meds for 25 years and have done so well I don’t want to risk a compatibility issue. I’m not eligible for Ofev. I haven’t needed oxygen and though I do have instances of dyspnea, they are tolerable. I, too, am counting on at least another decade of this wonderful phase of our lives. We wish you both and everyone else who follows this forum a wonderful holiday season. Stay safe everyone!
December 15, 2021 at 2:59 am #30612Jeff Taylor-JacksonParticipant
It is a great question. I agree with Phyliss, that since Covid hit there has been some studies into reversing lung scarring caused by Covid. This seems to have manifested itself as “Long Covid” Survivors of Covid still experiencing coughing and sore throats etc. ( We all know what that’s like, right?).
The point I’m making is that maybe the Covid situation has raised the awareness of lung scarring and indeed ILD and IPF. I am in England and belong to a charity, Action of Pulmomary Fibrosis (APF), we are actively raising money for research and raising awareness of this disease we have. I am aware of a couple of studies that are promising, again like all of you have mentioned, these are all 5 years away, at least from even becoming licenced. One study being carried out at Kings College London is a direct result of Covid. I know one chap who is a patient on that very study. It is a very small sample and will need more participants for the dataset to be anaylsed properly. I tried to join, but was told the study was closed for the time being.
I suppose it is difficult to understand, but these things take a monumental amount of time to complete, they always take longer than you think and cost more than you thought it would in the first place. I am an engineer and pretty much every project I have ever worked on – satellites, aircraft or submarines, it’s always the same. Late and overbudget.
I am 61, I fear that nothing will be ready in time for me, but we must not give up hope!
December 15, 2021 at 9:42 am #30613
Jeff, Yes, PF has been detected not only in COVID “long haulers” but those survivors who were on ventilators. In addition, veterans who were exposed to “burn pits” where plastic & other toxins were burned also exhibit pulmonary fibrotic disease. It fact, the latter was featured on a TV episode in Grey’s Anatomy here in the US. Awareness will hopefully increase funding & research into this dreadful disease.
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