- This topic has 28 replies, 14 voices, and was last updated 11 months, 4 weeks ago by
.
-
Posts
-
-
Hi All,
I’m very new to IPF. Discovered in November from a CT scan after a bout of pneumonia. I have approximately 70% lung function. I feel good, no shortness of breathe and since November I’m walking 3km per day without adverse effect. Over the last 4 months, I’ve lost 12kg by dieting.
I’ve been racking my brain about the source of the disease. Possible causes sprang to mind:-
Ammonia ingestion – isolated incident and possible side effect of a statin. Any opinions? Is it progressive? I do not have an autoimmune disease.
Now my pulmonologist wants me to start antifibrotic treatment. I’m terrified of the side effects. Any suggestions would be very welcome.
-
I have wondered about that too and actually bought a mask and filters so I can clean our oven.
But I have also used “Wet and Forget” and wondered if that may have caused some of my issues. I do think that my real problem started when I was a volunteer fireman and smoked, But the fireman part of my life was in my late teens and early 20’s. I stopped smoking in 1981. I noticed my shortness of breath when I was not able to swim lengths of a pool anymore. That was about 10 years ago.
Definitely start taking the anti-fibrotics your Dr is suggesting. (There are only 2 available now)
They will add years to your life!
There are only 2 on the market now. You can deal with the side effects if it means you get to live longer.-
-
-
Hi Duncan,
Thank you for the advice. The reason I asked about ammonia is that about 3 years ago I had a blast of pure ammonia in my face as I inhaled, as a result of an accident at my factory. I choked and couldn’t breathe for about a minute. Eventually I got my breath back, after coughing and wheezing. The ammonia reacts in the lungs with water creating heat (exothermic reaction) which may have burnt parts of the lungs, resulting in the scarring. If this was the cause of the fibrosis, I can’t understand why it should progress further as the cause was removed. The pulmonologists I’ve seen, after diagnosing me with fibrosis, haven’t had experience with it and don’t think it was the cause. They still maintain that the fibrosis I have is progressive, therefor I need to take the anti fibrotic medication. The big question is:- if the ammonia caused the scarring will it progress?
-
Cecil, I am not a Doc, but I would just assume that if you have an IPF diagnosis that it may well progress. (Nasty Stuff)
Yes, ammonia can damage your lungs and I don’t have any idea if such damage would lead to a progression.
But IPF being what it is, I would assume that it could be and go on OFEV or Esbriet if your Doc prescribes it. Both have shown the remarkable ability of slowing the growth of fibrosis. And that means an extended life for you 🙂I’m have been on OFEV 150’s for several years and just tolerated diarrhea. But recently I changed to a 150 in the morning and a 100 at night and things are MUCH better for me.
-
-
-
Hi! First, I’m not a Dr. and don’t play one on TV. I’m just another IPF patient. I assume you have IPF and the “I” stands for Idiopathic and the meaning is that the cause of the PF is not known. So, is it progressive? The answer is yes, unfortunately. If the cause were known and an autoimmune issue, I know of many that have been virtually stable for years. Otherwise, I’m afraid progression is what we have to live with. OFEV and Esbriet are the only FDA approved drugs for IPF and the data is overwhelming that the do help to slow the progression. It’s almost certain that if you don’t take one of them, your progression is going to be faster. Therefore, we really don’t have any choice. It is also not a certainty that you are going to experience serious side effects or that they cannot be managed satisfactorily. My suggestion would be for you to give one of them a try and if you develop unmanageable side effects, try the other and don’t worry about a side effect problem before it exists. Good luck to you!
-
-
Hello John
I’m curious about your comment about autoimmune -related IPF potentially being stable for years.
I have autoimmune diseases coming out of my kazoo (ITP – low platelets; hypothyroid; keratoconus in one eye) and these have all been with me for over 20 years, albeit without causing major disruption. So I wondered if they might in some way explain my IPF, which was diagnosed in 2019 as a result of a CT scan for prostate cancer (gosh, I’m really beginning to sound like a basket case here!). I’ve been on Ofev for about a year and don’t enjoy it – my LFTs have ben stable plus there’s no sign of progression on X-rays. Biopsy isn’t that commonly employed for IPF diagnosis in Australia, but my pulmonologist is in little doubt that he’s right about the IPF – can you tell me anything about the autoimmune disease linkage you’re referring to, pls?
Stuart
-
Stuart, Actually I know very little about it and I have more questions than answers. I participate in a large PF support group and I believe there are several in the group who have autoimmune related PF and they’ve been in the group for many years with little or no PF progression. It is my understanding that they take immunity suppressing drug(s) and do not take OFEV or Esbriet (the only FDA approved drugs for treating PF). This is an apparent contradiction to the often stated fact that PF is a progressive, fatal disease. So, maybe they don’t actually have PF? Or, maybe there is some autoimmune cause(s) of PF that yield a more forgiving form of PF? Or, perhaps I’m mistaken about details of the cases I’m referring to. We have another support group session coming up near the end of the month and I’ll try to ask a bit more about it. Thanks! JohnO
-
There are over 200 forms of ILD, IPF is the most progressive, but there are a number of auto immune /auto inflammatory diseases which cause PF too. I have Sarcoidosis Fibrosis, its the second most common form of PF. We have to try to reduce inflammation to slow progress. RA, asbestosis , birds, acid reflux, lots of other cause of PF. Its pretty complex, but ultimately all progress, its the speed that varies
-
-
-
Hi I was diagnosed with PF about 2 1/2 years ago and no known cause so I assume it is IPF. I was prescriped 1,000 mg of CellCept twice a day to slow the progression and so far it seems to be working. I have no side effects from it at all. I am tired all th e time and get short of breathe doing very little, but outside if that I am doing fine.
Randy
-
Cecil,
Sorry to hear of your diagnosis. As John said above I’m also not a doctor and believe the progression will be faster without one of the antifibrotics than taking one. We’re all different so who knows how the disease will progress in anyone of us but it will progress. If you’re a gambling person perhaps you’d put off the therapy till you become somewhat symptomatic. If that’s your choice it may not be a bad one but I would be very diligent in my follow up and monitoring of the disease process. The drugs don’t cure the disease but as said there’s a ton of info showing the progression is slowed by them. The side effects aren’t a certainty but I’d think they have a high probability of occurring over time. They can be and are unpleasant but they are also manageable. I’ve been on Ofev for about 25 months and an doing relatively well but I can tell but physically and via test results the disease is progressing but I do believe the therapy is slowing the rate of progression. Good luck to you.
-
Hello Cecil et al. I’m Don. I do happen to be a physician (now retired Ophthalmologist). I was diagnosed with IPF 3.5 years ago. I was initially diagnosed with HP (Hypersensitivity Pneumonitis) but insisted on a VATS lung biopsy. The treatment for IPF is very different than the treatment of HP. A recent article was published that shows mortality b is double in untreated IPF patients compared to treated IPF patients. It is shocking how many IPF patients are not on OFEV or Esbriet. In my opinion as a physician and patient, if you truly have IPF, get treated. These meds reduce the likeliness of AE (acute exacerbations). I have had zero progression of my lung disease in 3.5 years (Im 67) based on PFTs. I will take a few days here and there with occasional diarrhea on OFEV. To hold off meds until you get worse makes no sense to me as once the disease reaches a critical state—it’s harder to treat. This is true when I was treating glaucoma. More advanced glaucoma was much more difficult to manage than early glaucoma. there are studies that suggest second hand (from years prior) smoke maybe plays a role. GERD is likely a culprit and Sleep Apnea should be ruled out. Cryobiopsy is promising but to my knowledge the DEFINITIVE way and the standard of care to diagnose IPF is through a biopsy. As John so clearly stated the ONLY APPROVED MEDS FOR IPF are OFEV and Esbriet. I’m not familiar with any studies on Cellcept and IPF. IPF will progress so antibiotic therapy should be instituted early as they clearly reduce 5-year mortality by 50%!!
-
Cecil,
My husband was diagnosed with IPF in 2014 and began taking Esbriet and after 8 years, he is still with me and he is remaining stable. He got sunburn badly early on so sunscreen is necessary! He also still gets kind of spacey a few times a week after taking his medication but within 30 minutes it goes away. He is alive 8 years later so he can deal with being spacey a few times a week. I strongly suggest you take either OFEV or Esbriet until there is a cure!
God Bless
-
Hello Cecil:
I’m curious as to where in your lungs there is fibrosis. Most PF (pulmonary fibrosis) is at the base of the lungs. The location of your PF May help differentiate IPF/PF from this awful ammonia accident. If it is truly from the ammonia incident I agree it should not progress unless by some crazy coincidence you were destined to get PF. Maybe genetic testing can be considered (any family history). A VATS lung biopsy would also differentiate IPF from HP.
-
Hi Donald,
Thank you for the reply. According to my pulmonologist, the PF is widespread through the lungs as shown by the CT scan. According to her, I have about 60% lung volume not affected.
Another cause, which I have found in literature, is from statins. The FDA has warned that statin drugs can cause interstitial lung disease. I was put on Crestor in 2018 due to a partial blockage of my carotid artery, although I don’t have high cholesterol. The scarring appears to be at least 18 months old. Anyway, I’ve stopped taking the Crestor altogether. Hopefully this will also help.
-
This is interesting that there might be a connection between statin drugs and IPF. I have a friend who is taking 10mg Crestor for 16 years and with no effects. My doctor prescribed 10mg Crestor 15 months ago but by then, my IPF was already detected. I was diagnosed in Oct 2020, I started OFEV (100mg) 2 weeks ago. I am having serious issues with sleep after starting OFEV, but no other side effects. My stomach appears to be tolerating it well.
I walk briskly about 6 km each day, no loss of energy or shortness of breath or lack of oxygen saturation. My recent 6 minute walk test yielded 630 feet about 30 more than last year. I am not sure what is going on inside my body. I scheduled a visit with Baylor College of Medicine in April. I had developed morning cough over the last 12 months, but OFEV seemed to have helped. I don’t cough through out the day. I have been an active and outdoor person all my life. Still play tennis once a week but energy level has gone down. That is to be expected. I am 68 now.
Thanks for sharing your experience.
-
-
-
-
Cecil:
Thanks for reaching out to me. The articles I’ve read on statin use and IPF are interesting. I’ve been on statins for many years. My IPF is stable since my diagnosis 4 years ago. Will certainly look into this. I’ve been diligent with my CPAP use. Sleep apnea is a hugely under-treated condition that is also linked to this wonderful disease!! Thanks for your message.
Don
-
-
Cecil:
i have been on OFEV since my diagnosis 9/2018! I likely had symptoms (not respiratory) for a year or two. My ultimate diagnosis was confirmed by a VATS lung biopsy. I’m grateful for being able to get OFEV and tolerating it as well as I do. As I love the sun/beach I knew Esbriet wasn’t for me.
-
It no longer matters much as to what caused it, what matters is doing everything to prolong your life if you can remain viable. I chose the Esbriet medication as the other one can exacerbates heart problems and I already have enough of that in my family history, there are side effects of both medications, choose your poison.
-
Thank you very much for your advice Christine. The reason I enquired about the cause was to find out whether the fibrosis would be progressive or not. If it is not progressive in my case, possibly due to the statins I was taking or due to the incident I had with ammonia ingestion, then I wouldn’t need medication.
However, as no pulmonologist I’ve seen knows the cause, the choice is between a watch and wait approach, which is dangerous or going onto the medication immediately risking the side effects. Well I didn’t want to take a chance with the watch and wait approach, so I started Esbriet treatment on Sunday. Fortunately thus far, I have had minimal side effects – dizziness for the first 2 days but nothing since. I am still on a low dose of 1 capsule (267mmg) 3 times a day for 7 days. Then I go onto double that for 7 days and thereafter treble the current dosage. I just hope there are no bad side effects with the higher dosage.
-
-
-
The I in IPF stands for a word I can never remember that means unknown cause and all of the Lung function diseases COPD, Emphysema, PF, IPF, are progressive until you die from it. There are side affects of the meds, but they are manageable, nausea being the worst for most people. I found that taking mine at the same time with food keeps it in check. The meds do slow down the progression.
-
-
-
Hello. The term “IDIOPATHIC” means there is no known cause. If you have fibrosis (ILD) (Interstitial Lung Disease) due to/from asbestos, livestock, molds, statins, chemicals, Bleomycin, toxins/meds, Covid, severe smoke inhalation, RA, Sarcoid, scleroderma—then it’s not IPF (IDIOPATHIC Pulmonary Fibrosis). Those above causes/associations are treated accordingly. The most definitive diagnosis of IPF (to my understanding) is via a VATS lung biopsy. Based on my initial HDCT (high definition CAT scan) I was diagnosed as having HP (hypersensitivity pneumonitis). I was about to start therapy (in 2018) with high-dose prednisone and possibly Cellcept but I pushed for the lung biopsy b4 I started Prednisone. The lung biopsy showed that I had IPF and not HP, and from that moment on I was treated with OFEV. OFEV and Esbriet are the two approved medications for IPF. These 2 antifibrotics reduce mortality by 50% over those IPF patients who are not treated. There are other medications that help certain symptoms with IPF, but have not been shown to reduce mortality in this ILD called IPF. It seems to me, both as a patient and as a physician, that if you truly have a diagnosis of IPF (beyond the diagnosis of interstitial lung disease) One should be treated with the best approved medication for that disease. Despite the pitfalls of glaucoma therapy (Im a retired Ophthalmologist) (drops every day; redness; etc)—-keeping glaucoma at an early stage far outweighed blindness when therapy is withheld or delayed or ignored. Am I wrong in my thinking that IPF is a specific type of ILD that should be treated differently, early on and aggressively (i.e. antifibrotics) compared to an ILD that is not IPF?? I would welcome any comments. There are many new exciting things coming out (cryobiopsy, etc) but are not standard of care yet.
-
I started on OFEV around 6 months ago. Two 150mg daily, 12 hours apart. I’m 72 with mild fibrosis as well as mild emphysema. 70% lung capacity. I’m being tested tomorrow. Hope I still have the 70%! Started the OFEV and I had no issues for the first 3 months. Then unpredictable bouts of horrible diarrhea (sp?) and flatulence began. I began to take Immodium once daily and the problem was gone. I became very constipated and only needed to go every other day. A week ago I started to take Immodium at the rate of 1/2 tablet each evening and took several fiber capsules daily. I’m still constipated so I skipped the 1/2 tablet yesterday but continued to take around 5 fiber capsules. things went smoothly today. I am going to stick with the half tablet every other day along with the fiber and hope for the best. Still looking for the right combination….Hal
-
- You must be logged in to reply to this topic.
