I also tape one 11 Hour small hand warmer to the mask and the heated air helps a whole lot  I have been using rebreather masks from vitality medical and changing every week. I will check out the above machine

Wei only works if you take all those capsules every single day.  If you skip days or weeks it is not as effective at all. It is a lot of tablets to take every single day with no slack combined with your other medications on top of it. FYI

That runs $1500 a month so it would be $3000 for two months of the soup a and b And that other one plus the CL or clear lung which $189.  $1312 plus the 189 is about right at 1500 per month to throw the kitchen sink at the disease. I think I am getting some benefit. I am on the Ofev too to hopefully slowdown the disease progression. Expensive… Read more

I think I need an exorcism   The thing has a soul. I feel like it might be contributing something to my general improvement. This stuff is all they had 1000 years ago.  I will post back after the holidays when I am done. Anybody know a good witch doctor.

I been on Wei for three months and like the others it is hard to say. It may have helped getting my inflammation down along with my prednisone bursts each month. Did you know that fibrosis is actually inflammation at first ?  There are transplant pushing Pulms that would disagree.  they also hate my pred 5 tablet bursts prednisone – why- the… Read more

I mentioned I was rejected for lung transplant because I offended a jerk doctor then realized he did me a favor. He said I was frail and I said I could kick his arse. I curl 45 what do you do wimp. Pulmonologist = Lung Transplant Salesman. Outcome Percentages are poor.  I stand proud and tall of my self advocacy aka big mouth.  So I looked… Read more

I too appreciate this information and those taking the time to convey it.  I was recently declined for a lung transplant probably because of my outspoken mouth calling the doctors antics and contradictions as i see them.  After all of that testing trials and tribulations.  I left feeling like they had done me a favor when hearing all that you… Read more

At 30,000 feet on a plane, my interstitial disease lungs go bonkers and the saturation levels drop like a rock. Be sure to take plenty of oxygen on the plane.

I have the enlarged prostate and difficulty with urination for which i was prescribed Flomax.  After two months it is working well.  Not a good issue to have when you are on Lasix for fluid also.  All i do is pee.  I have also Lost weight and have gone from my former body builder mass to skeletor the bag of skinny bones. The fluid also… Read more

Prednisone has been my most effective medicine. 40 mg bursts for five days every three weeks have worked best and minimized the side effects. The doctors also have me on 7.5 mg per day in between but I am not sure what that does.  Every three week burst peels down another layer of inflammation. My lungs are now significantly healed from… Read more

Keep fighting til the end is my motto on this. Go down swinging and take some doctors with you. LoL  Cheers!  Difficult days coming for me a test, a doctor, a drivers license renewal and a vaca with the grand kids   All a struggle and an imposition on others with my condition at hand and oxygen in tow.   Battle Speed!  Raaah

 

I think I am seeing benefit from it. Just a lot of pills to take every day. I think it is helping along with my other meds.

I dropped down to 100 mg OFEV and have zero side effects now after a three month pause between the 150 and 100 then started the 100 a while back.

Yes I am taking both. I have PH and PF.

Lnour

Dr Lobo is a nationally reknowned doctor whom I had appointments and discussions with regarding stem cell therapy and is the credible source of my information.  He was brought up by another participant in this forum to which I responded   It seemed quite pertinent to the subject

The lung institute at least used to do stem cell therapy… Read more

I am not sure but it might be helping me. I improved but I am not sure if it is the prednisone bursts, the Wei, the disease cycle, the oxygen adjustments, the Tyvaso or the Ofev.  I am not going to chance stopping the Wei in case that is a contributor to the upturn.  I was breaking the capsules because I didn’t want to ingest all of that… Read more

The Place is called the Lung Health Institute on line and are probably the oldest private cellular treatment around that Hopkins doctor told me they were after them.  Dr. Lobo really did impart the dangers to me as I described.  I wish you all the best of luck and hope that you do find something somewhere with the stem cells, but I do think… Read more

I had to take medical classes on line to be a doctor to manage my doctors and my disease. I agree that second opinions from such high level places are a smart thing to do. But I have found that they all lack knowledge of interstitial lung diseases. There are 200 types. Did they tell you that? I found mine on NORD for rare diseases. One… Read more

Dr Lobo is my Doctor and I went to see him for that reason. He has had to abandon that program due to bonding amd money. He also made it clear that his systemic stem cell injection is not for everyone and has dangers as I described to some level above   He is however a very good pulmonologist but it was a four hour drive and my PH didn’t like… Read more

Yes I have PH lungs which is a complication and it is the most debilitating aspect of my disease. My lung PFT scores hardly decline but then there is this pulmonary hypertension from the narrowed hardened lung blood vessels and all which is worse.

Sounds like Pulmonary Hypertension to me   Classic symptoms that I have experienced. Most Pulmonologists miss it too.  Unfortunately a right heart Cath is needed to precisely diagnose. This is often caused be lungs also or calcified arteries and veins or both.

These posts were very helpful as I am taking the Transplant plunge this fall.  Thank you very much.

Not approved by FDA and only available at private companies of suspect success rate lets say.  There is also some danger involved in the treatments injected.  China has a good trial going where they inserted by bronchoscopy instead of systemic injection.  But I would stay out of Wuhan, LoL.  It all sounded good to me too and I looked deeply… Read more

I take Gabapentin.  It works quite well.  Two tablets will give you a good sleep, one will be mild sleep and not effect your wake time.

I have had the most success with Prednisone than any other drug.  It is just that the dosage was critical for me to get dialed in.  There was significant concern about Side Effects enough that my initial Pulmonologist would not prescribe it, allowing PF to chew up my right lung for 4 years.  After changing Pulmonologists, we dialed in at 7.5 mg… Read more

Yes. If it irritates and makes you cough badly with mucus like me then it could be causing inflammation which decreases lung function.  Other than the irritation it sounds like a doctor question.

Go see a Good cardiologist. I take Sotalol And  Metoprolol for that to slow it down. Good drugs with no side effects  If you have an arrythmia or SVT event they may put you on Elequis, a blood thinner also a good drug to prevent stroke.

That’s me anyway. But the PF does affect the heart which I am living proof

Tyvaso inhaler  is merely a Vasolidator and is for PH Type 3 only and has no affect on PF itself but will widen the capillaries in your alveolar packages damaged by the PF improving blood flow.  Don’t waste your time thinking it is a PF cure or something.  I doubt that a prudent doctor would even prescribe it for anything other than PH. PAH is… Read more

Vincent- no i am in the USA and not familiar with the UK Market for Concentrators.  Good advice to get a finger oximeter from the others.  sounds like you may need a stationary unit for home use that puts out up to 10 lpm continuous flow- the Millenium company makes a good one here.  You will also need a portable unit that puts out 6 to 9 lpm… Read more

I feel very lucky to have a good one and good family coming to my aid.  I was once proud of my physical prowess and never dreamed i would have to depend on others like this.  I use the word caregiver proudly and am thankful for those around me.  God bless those who give of themselves like this for others.

I am on Tyvaso now. My good insurance luckily covers it which i also work hard for.  It is for PH Type 3 Lungs where the capillaries and small veins and arteries have narrowed   It is a vasolidator which expands these narrowed blood flow corridors in the lungs so that perhaps they may recover after the blood flow fills back in them.  PH… Read more

Alert!!    75% is extremely low and quite dangerous.  I am not sure how she is getting along a all at that level.  I can’t imagine any doctor releasing her without oxygen waiting and also portable oxygen.  I had to buy in home concentrators on line- a Millennium M 10 and a Sequal Eclipse 5 myself.  Best of Luck to you!

Yes the insurance pays the $15000 per month because luckily I kept my good full work care first insurance as a backup to Medicare.

your pulmonologist will recommend you for a transplant when you are at that stage. There is a long evaluation and acceptance process which I am in now. Don’t do it until you are really bad like on full oxygen and… Read more

Hi Christie

Tyvaso is for PH pulmonary hypertension. I have type 3 lungs. The internal alveoli of the Lung are little package units with the small blood vessels and capillaries which also become badly damaged with the fibrosis.  They become inflamed and narrowed and then hardened in that narrowed state. Tyvaso I use is an Vasolodator inhaler… Read more

I just started the Wei and breaking open the capsules takes time. I am at a Hail Mary point and heard good feedback on line. I will spend about $10 grand on it. I will let you know how it goes. I work hard remotely for a reason. Good Health insurance and the sheckles for medical items like this and other and a 1000 a month German shepherd to… Read more

I have some of that.  Can you describe it better.  Mine is more related to oxygen hitting the damaged areas.  Is that your case or is it burning even without oxygen.?  Is it burning on the outer lung by the chest wall or inside the lung more?

I have the throat clearing also.  I think it may have to do with the proximetry of your fibrosis to your throat areas.  I noticed some indications of that in myself.  If prednisone heals my inflamation the throat clearing goes away and has mostly gone.  It is apparently related to the inflammation which prednisone attacks.  I have PF… Read more

I made it 6 years and was supposed to die in two. Even though they tried to kill me without trying to with their negligence. Take the diagnosis and prognosis with a grain of salt as cited by the gentleman above.  Everything is not IPF at all.  These doctors…..

I am on my 6th second opinion and going for more.  Starting with Johns Hopkins, reputedly no. 1, with my doctor treating Trump on TV ( no politics involved here at all just showing the reputation of the man selected to treat the President at the time )  called for a lung transplant and said i would be dead in two years.  But then took 4 years… Read more

<span style=”caret-color: #303030; color: #303030; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month.  It has worked well in giving me the ability to work out and… Read more

I have been using the Millennium M10 stationary concentrator for in home use with a humidifying bubbler and high flow cannula up to 10L with the long green hose.  Then i use the Caire Sequal V portable rolling unit at 6 L pulse with high flow cannula to get around.  I use 2 liters sitting and sleeping with a low flow cannula.  Very happy with… Read more

I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month.  It has worked well in giving me the ability to work out and get around better.  I try to keep oxygenated to minimize the vasoconstrictions and vasospasms also as your soft tissue sends messages to your body to close off the poorly oxygenated… Read more

I took it for three months with protein and carb perfect diet and was fine. Then the acidy type of effect hit my lower GI with various unpleasant affects   So I had to stop and now i am stable after 4-6 weeks being off of it. So it was apparently the cause of my stomach issues. If I start again I will try the 100 mg dose. However I may… Read more

My doctor was on national  tv treating president trump with corticosteroids for Covid lung  I had mentioned this in a previous post. But so he wouldn’t give them to me due to side effects stance he had taken at the time.  I guess Connelly and the other doctors set him straight on the needed dexamethasone. He told me I would be dead in two… Read more

the oldest New Years resolution in the books. Exercise more. Weights and cardio.  That is the key to healing PF or at least extending the years.  Crank up the O2And bust hump.   it is hard but do it.

Pursed lip breathing saved me on my first airplane flight at 30,000 feet when my oxygen dropped like a rock and I had not brought a concentrator back in 2015.  It worked and raised my sats back up several points. I was glad to have remembered it from rehab. My Johns Hopkins doctor looked astonished when I told him of the affect of the… Read more

I have had luck with Gabapentin prescription and Tart Cherry Juice Cheribundi at night evening before bed to help me sleep.  I am worse off than you guys fromCovid 15 LoL. Ate up my right lung.  Lack of diagnosis and treatment also. Many just know COPD and Asthma and not ILD PF. My  Johns Hopkins doctor was against steroid use but then went on… Read more

Ofev is a problem for everyone stomach   Acidy type of activity.  Gets worse as months go on   The right food helps   The type of food varies by person to person.

Phlegm or mucus is a sign of inflammation only remedied by prednisone.  I say where there is smoke there is fire. Mucus is the smoke inflammation is the fire.  Bursts of two 20 mg tablets for 5 days every 4th week is the best medication I have going.  The 7.5 mg per day maintenance between.  This way there are no side effects. I have NSIP… Read more

I think the autoimmune suppressant lung transplant medication may have prevented the virus from turning into Covid disease and an autoimmune over reaction which does the most damage on you as it did me who has been on CellCept for a couple years. I had the same symptoms from the virus and no lung action. Lucky me. That’s is what I figger anyway.… Read more