Pulmonary Fibrosis
Posted , 8 users are following.
My brother whos in his early 70s has been diagnosed with pulmonary fibrosis. He actually is currently totally symptoms free. He has no cough, no weezing, no breathlessness.
This problem was discovered by accident during a routine checkup for his hypertension. The doctor heard a velcro sound in his lungs and ordered an xray. On checking he reffered him to a lung specialist.
The thing is, just 2 years ago his xray was clear. The x ray now shows parts of the lungs covered by by a lighter color. he's been scheduled for a CT scan 3 weeks from now for confirmation. The doc seems to be certain its idiopathic pulmonary fibrosis ( IPF) even before the CT.
A check on the internet shows a really scary prognosis.
My question is : Can they really tell at this stage?
Is it necessary to start the meds if there are no symptoms. The problem is he cannot communicate cause he's autistic making it hard to tell side effect. The doc expressed that concern.
Has anyone tried serrapeptase which seems to help or any other supplements. Curcumin perhaps which is anti inflamatory?
The CT and doc appointment is 3 weeks from now. Maybe we can try some of this in the meantime.
What blood test would be necessary.
We're new to this. Any thoughts and advice will be appreciated.
Thanks.
0 likes, 16 replies
bob80691 patrick51322
Posted
Hi Patrick:
I'm in Canada and I was diagnosed with idiopathic pulmonary fibrosis 5 years ago next month. Five years later I still do not have the normal symptoms of this disease. I do get some mild shortness of breath on my morning walks IF I walk up a medium length incline or after exertion but nothing like what I hear and read about. I'm also not on ANY medication. I do take a health supplement which over here as NAC (N-acetyl-L-cysteine. It is primarily used for relief of the symptoms of cronic bronchitis but has shown to be useful also with IPF.
IPF Is a very rare condition and you cannot effectively diagnose IPF froman X-Ray so let's see what the C-Scan shows and he should also be sent for a Lung Function Test provided his autism will permit such a test to be carried out.
Around the time I was first diagnosed, I also suffered from bad Acid Reflux (also known as Gerd or Heartburn) and there is a school of thought that feels there is a direct connection between Acid Reflux and IPF. Personally I am convinced of this connection in my case. Also, the fact that I have been on daily medication for my Acid Reflux has had a positive effect on what appears to be a lack of progress in my IPF.
You ask about medications and it would be wrong of me to suggest your brother go against his physician's advice. However, none of these mediications is a cure, at best they slow down the process of the disease. So far my physician has given me the choice of taking medication or monitoring the progress, if any. Since, like your brother I have no real symptoms, I see no benefit in my taking medication (with its possible severe side effects) as I doubt it could not possibly slow down my IPF progress to any lower level than exists right now.
Hope this helps and good luck to you and your brother. If I can help further just ask.
epictetus1939 bob80691
Posted
Very interesting to see your post as I am in almost the same situation. IPF diagnosis, Gerd and minimal symptoms and no measurable deterioration of my lung volume. (currently 105%) I take lansoprazole for the Gerd. I get a lot of mucus coming up and have to clear my throat particularly in the morning but no bad cough. I would like to know if the mucus is caused by stomach acid vapor reaching the lungs of if it is a feature of the IPF.
I am on a drug trial of Nintedanib but it is too soon to know if it is doing any good. Did you ever get your gas transfer measured (DVCLO).? mine is 60% which is below what I am told is the normal of 80%. Due for another gas transfer measurement in a couple of months. My view is that the lung volume test is so inacurate that it is a poor guide to the disease progression.
Hope this gives some help with an optimistic view to you Patrick
bob80691 epictetus1939
Posted
Hi:
Thanks for your comments. I have had 6 lung function tests since 2012 and my actual lung performance over this period has been very stable. The % to normal (Predicted) has also been stable. My tests have covered the full gamit from Spirometry , Lung Volumes and Diffusion. My DLCO, expressed as a % of Normal, is actually in the Severe Low category but given my lack of symptoms, I am more inclined to look more at the actual DLCO result which has been almost unchanged in 5 years and not at % to normal. In addition to IPF, which is a Restrictive lung disease, low diffusion test results can also be indicative of Obstructive( e.g. Emphyema) lung disease. I also have emphyema so my overall results are a mixture.
My respirologist might disagree with my approach but I plan on having a good discussion on the topic when we meet again in May.
If you haven't already done so, I encouage you to read up extensively on the internet on interpreting Lung Function Test results. There are tons of articles and there are videos on YouTube. You have to bear in mind that you cannot directly compare your results to mine as the equations used to arrive at the norms will vary by country and will definately vary with age, height and race. Weight is not usually a factor.
Regarding my Gerd, I take a daily medication (40mg) before breakfast which over here is called Tecta. It is a Proton Pump Inhibitor that cuts back on the acid actually entering the stomach. All of these drugs seem to fall into the "...prazole" family but some are better than others. Tecta is particularly good for me.
I don't have much of a cough in the mornings (or any other time) but I blow my nose a dozen times. I have Post Nasal Drip that allows mucus to go down the back of my throat overnight and then returns and causes frequent nose blowing in the morning. I've had this for many years. I do clear my throat a lot but this is the Emphyema.
I'm not on any medication for my IPF but I do take a health supplement called NAC which i'm sure any health store in your neck of the woods will stock. It is intended for us with cronic bronchitis but has shown good results with IPF.
Today I feel no different than when I was first diagosed in 2102 and that more than anything is what causes me to ask many questions about this disease and in particular to try and understand lung function testing and how to interpret the results.
Good luck as you move forward.
patrick51322 bob80691
Posted
patrick51322 epictetus1939
Posted
Thanks epictetus for your reply. Any spirometry can't be done cause of autism. What blood test do you think might be useful?
Does the finger oximeter help? His resting at the clinic is 99%. I guess if they're right about ipf it should drop after his walk. I will purchase one and check. If it does drop say to 80% should he stop his walks? There's 3 weeks to the next appointment to review the ct ordered, so any advice would be appreciated.
Not being breathless doesn't guarantee efficient O2 use i presume.
susan5601 patrick51322
Posted
My husband had Idiopathic pulmonary Fibrosis and sadly passed away 11 months ago. This desease can suddenly become serious very quickly so please follow your doctors advice. I am still in contact with my husband's first consultant who is researching the effect of rapeseed oil effect on people with pulmonary Fibrosis and she has noticed that if people with this condition avoid rapeseed oil which means cooking from scratch as it is in most things the symptoms are halved and lung capacity improved.
patrick51322 susan5601
Posted
Susan
Thank you for your reply and I'm truely sorry for your loss.
patrick51322
Posted
Bob
Thanks for replying.
My brother has no physical symptoms. Even after half an hour of walk which includes aflight of steps. But he does walk slowly so that could explain the lack of breathlessness.
You said that only a ct can tell ipf for sure. What else can it be besides that? Are there other diseses which show scarring on xray and velcro sounds on stethescope?
The doctor seem to be sure its ipf. He said ther was no need for a biopsy.
Yeah, because of his autism he can't do the spirometry. I understand there's a blood test to acertain if its autoimmune in nature. What good does that info do? Do you know?
As for supplements, my trawling on the internet indicates the most used one to be serrrapeptase. In one case a guy reported a slight reversal! ( take with a pinch of salt - its the internet afterall )The dose taken by most people appears really high. So we've started small 40k iu.
As for NAC a number of people with ipf take this but the reasearch seems conflicting. Well we've started small 600mg.
Curcumin from turmeric seems also used. I'm ordering it. Its a food so i figure its safe.
Note to those reading: I'm not advocating any of these products but merely reporting what i read and doing. Please discuss with you doctor if you want to try any of these.
I think we should have a tread just on supplements with people reporting their experience and knowledge.
And here's something interesting. I was trying to figure of why this change in his lung xray in just 2 years. What did he do differently. The only thing was a change in his bp meds. One med which was an ace inhibitor was discontinued cause of a change in bp pattern. And guess WHAT? My search on the internet showed that doctors have known that ace inhibitors may have and effect in attenuating IPF. Perliminary research a long time ago showed positive results on mice. Since this is a tough disease one wonders why this line of research was not persued. Anyway I figured if you have to take a bp med,might as well it be an ACE. So i got the GP to restore it . Small dose though but every little bit helps( if it works) \. Note again to those reading : I'm not advocating treatment with ACE. I'm just reporting what we're doing. In his case he has to take a bp med anyway.
BTW Bob thanks for you positive message. It gave us hope.
bob80691 patrick51322
Posted
Patrick I think you should wait for the CT Scan and plan things going forward. IPF is a rare disease and it can be difficult to diagnose. I don't know all of the various lung diseases but there are several. Just one comment: his oximitry at rest of 99% is very good and if he was able to have the oxygen diffusion test (this is part of the lung function test) and IF it indicated a low result, the high oximitry at rest would indicate his body is compensating on its own. But please wait for the C Scan and go from there. I sense you may be grasping at anything at the moment and I don't this this is necessary. When the results are in you should also ask to see a respiratory specialist if the doctor you are seeing is just your family doctor.
patrick51322 bob80691
Posted
Hi bob
Thanks for the quick reply.
The doctor that we saw at the hospital is actually studying to be a respiratory specialist reporting to his professor. After all tests done i 'll surely ask to see the Prof. or at least a respiratory specialist.
That doc actually said the same thing as you did. That my brother is compensating. At that point all he had was the xray from the family doctor, oximetry at rest and verbal feedback, stethescope ( velcro sounds ) and physical check ( fingers - everything was ok ) He also said that at some point in time he may not be able to compensate. That kind of worried me.
He seemed to be pretty certain its ipf and that he was only ordering the ct only for confirmation if i wanted it. Well of course i wanted it.
Returning home and checking about this ipf on the internet scared me even more. Your post and that of epictetus calmed me and give me hope.
Thanks to you both for your feedback and advice.
patrick51322 bob80691
Posted
Well a ct scan was done a few weeks ago for my brother and its confirmed thets its IPF. It was decided that since ther are no symptoms for now its best to just monitor him.
His oximeter reading which was consisitantly at 99% was at 98% a few days ago at the GP which we visited for an unrealted problem. Do small fluctuations mean anything?
His breathing rate is 22 breaths per minutes at rest. Is this too high for someone in thier 70s ? Depending on which internet site i visit i get a different answer.
bob80691 patrick51322
Posted
Hi Patrick51322:
Sorry that the diagnosis was IPF. His oxygen reading at 98% is a good indicator that although he may have a restriction in his oxygen diffusion, his body is compensating on its own. I'm in the same boat. I don't know anything about measuring breathing rate so I can't comment on that.
I'm in the same position as your brother and have been for over 5 years. I have IPF but none of the severe symptoms and I am on no medication. I do take a health food supplement called NAC which i'm sure you can get at any health food store. But check with your GP first. It is primarily for cronic bronchitis but has shown it also helps IPF patients. My situation is just being monitored like your brother so I see that as encouraging.
epictetus1939 patrick51322
Posted
The best tests for IPF is a CT scan. I dont know about blood tests but I dont think there is any test as useful as the CT scan or possibly a biopsy. A high vegy diet is good but I dont think there is any supplement which is patricularly efective.
I would say an increase in breathlessness on exercise is the real issue and the best measurement of the progress of the disease...better than spirometry. How bad is it after running up 50 steps? This is my personal measurement.
Exercise is good and some level of stress is good so long as the breatlessness is not too great. Inability to speak is beyond the safe limit. You should not let the saturation go below say 70% or the pulse rate above say 120.
epictetus1939
Posted
I forgot to mention...breathing is triggered by the oxygen concentration in the blood so breathlessness is a good measure of lack of O2 and vice versa.
Gardenia patrick51322
Posted
Something is getting into the lungs and brains and attacking the cells.
patrick51322 Gardenia
Posted
Gardenia,
I'm sorry for you loss. I can imagine how overwhelming it must be to be a care giver. Please take care.