[Ben Robinson]

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 per day, then Bursts of 40 mg per day for 5 days every three weeks, then a 20 mg taper for one day, then back to 7.5 mg.  The Bursts are most effective.  Prednisone affects everyone differently, but I found that for me it loses its effectiveness after a week or two anyway.  Like it has this initial jolt and then fizzles a bit. So these bursts are perfect for me and 40 mg dosage for a duration no longer than 5 days has no side effects.  Anything under 10 mg has no side effects.  The only side effect I have encountered is as described above, called mood swings and difficulty getting to sleep, but I don’t call them that. Its more like an alert lack of fear where you don’t tolerate people messing with you and stand up for yourself.  So I like it and during my bursts, I can get some computer work done without sleeping my life away tired from my disease.  That is my wonderful experience with prednisone.  :-).

[Ben Robinson]

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.

[Ben Robinson]

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

[Ben Robinson]

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 caused by calcification or cholesterol plague in the arteries which is a different type than Type 3 Lungs.   These types are often confused causing misdiagnosis.

[Ben Robinson]

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 pulse such a the Innogen G6 more portable 6 lbs or the Sequal V by caire- 18 pound cart.  Your insurance may otherwise cover oxygen delivered to your home and will have a portable. 85 is your benchmark oxygen anything lower is not good anything below 80 is very bad over periods of any length.. Special danger alert on that.  Good luck with everything. God Bless.

[Ben Robinson]

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.

[Ben Robinson]

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 results from this poor blood flow and is as big a reason for transplantation as bad lungs.  PH is miserable especially the shortness of breath and eats up your heart.  The lungs are very smart organs and react to poor oxygen areas with vaso constriction reducing the blood flow even further and do not process carbon monoxide either causing bronchospasms.  They also send messages to the heart to beat faster causing SVT and arrhythmia.  I have a side effect of raw exposed lung burning and causing inflammation causing some issues.  I also use it as a tool for the PH and it works but if i get inflammation my saturation drops. I am an unusual case.  I am not sure everyone would have the burn.  I am not sure that it would be prescribed to someone without having PH which is only verified by right heart catheritization.  Probably applicable to more advanced stage patients to help get them to lung transplant.  Like me.  Best of Luck and I hope this helps.

[Ben Robinson]

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!

[Ben Robinson]

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 maybe even a wheel chair stage. Get accepted then wait and anticipate 4 months out that you will be in clear need.

[Ben Robinson]

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 and it cost $15,000 per month   It opens up the narrowed veins so that the right side heart doesn’t have to work so hard. PH makes you unable to walk very far when when your saturation levels are satisfactory. A shortness of breath.  Worse than the lung disease itself

Rehab is a must. For interstitial it is every other day and recover the next. I hope this helps.

Ben 6 year Vet supposed to die in 2 but research helps me get here. This is a great forum thank you.

[Ben Robinson]

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 keep me company. Putting off transplant as long as possible. China is good and bad right. LoL.

[Ben Robinson]

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?

[Ben Robinson]

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 autoimmune not IPF.  I dont have the cough except from the oxygen toxicity in my smooshed up capillary/alveolar units.  There are 200 types of these diseases i hear and i am a more rare odd one.  it is still bad because i was not treated properly early on at Johns Hopkins.  I found Manuka Honey to be excellent for the throat clearing and some warm tea.

[Ben Robinson]

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…..

[Ben Robinson]

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 to make a diagnosis hundred tests of all sorts and never really did. Good man, hard working man, smart man but just overloaded and in his own tunnel of knowledge.  ILD diagnosis is slippery like the eel to grab with 200 sub diseases to sort through.  I am still quite alive in year 6 after taking medical classes to understand the jargon and processes despite the “your PFT declined 5.3 % get a transplant and die” prognosticators.  I am glad i didnt drink their Transplant KoolAid and would absolutely say to do like the above people have and travel the Country collecting opinions.  I also did.  Be your own advocate as they say.  Hats off to those of you who went through a lung transplant.  Cheers to your hard work, pain and success. I have yet to have full confidence finding doctors who can read a CT Scan and other imagery.  I am not sure any of them have full command in the reality because they are simply difficult to read.  I had a Robotic VATS Biopsy and it was a walk in the park except for removal of the Chest tube ouch.   But talk to the surgeon who performs it and also find out who is doing evaluation the material.  I found the surgeon input to be the most valuable.  They send out the slides to be viewed on a microscope or whatever by a pathologist tech of various experience levels and it doesnt seem to tell the full story.  I had three different diagnosis from the same slides.  The University of Maryland had the most accurate but the slides do not tell the full fibrosis story just primarily the underlying disease cells triggering it possibly like NSIP in my case which has generally ceased and the fibrotic Cytokine autoimmune storm with it.  The damage with PF piled up skin remains and i am working on that.  The tests and reports all have value but also have flawed interpretations mixed in.   Study and collect opinions for your own self in my advice and that includes reading the inputs in this valuable forum like i am doing now.  I hope this input adds some information of value to your journey of discovery which it truly is.

[Ben Robinson]

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 areas and asks your heart to pump faster causing SVT or Arrythmia.  TYVASO is a vasolidator which expands your veins small arteries vessels and capillaries for four hours a round but then allows the increase blood flow in the veins to expand them more permanently it seems in my case.  If you have good insurance, but i think medicare actually covered it. I have a 39 PH score which is borderline severe and it was confusing the pulmonoligist who was blaming my lungs.  I said why am i short of breath when my Saturation level is in the 90’s.  So He says go get a transplant- their favorite line bleating from the mouth when they dont have technical answers and basically say go play lung russian roulette. Many doctors do not understand PH.  Vasoconstriction PH is a common development in ILD PF patients.  Dont let them tell you PH is all arterial calcification either.

[Ben Robinson]

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 these machines.  I hope this information helps.

I also had loss of appetite with my PH and ILD PF but no real bloating. I am down to my early High School weight before football. It got a little better as my PH and lung oxygenation healed a bit.  These gastric issues sound like a job for a doctor(s) and could have varying root causes unfortunately.

 

[Ben Robinson]

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 areas and asks your heart to pump faster causing SVT or Arrythmia.  TYVASO is a vasolidator which expands your veins small arteries vessels and capillaries for four hours a round but then allows the increase blood flow in the veins to expand them more permanently it seems in my case.  If you have good insurance, but i think medicare actually covered it. I have a 39 PH score which is borderline severe and it was confusing the pulmonoligist who was blaming my lungs.  I said why am i short of breath when my Saturation level is in the 90’s.  So He says go get a transplant- their favorite line bleating from the mouth when they dont have technical answers and basically say go play lung russian roulette. Many doctors do not understand PH.  Vasoconstriction PH is a common development in ILD PF patients.  Dont let them tell you PH is all arterial calcification either.

The PH also brought along with it the lower extremity and mid section fluid which i have under control with flurosemide 20 mg a day or as needed and regular drinking of a couple glasses of water per day, elevation of feet and legs and compression stockings.  hope this helps.

[Ben Robinson]

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 have halted the root cause autoimmune activity with CellCept Ofev and disease cycle from years 4.5 to now 6. So it may not be needed anymore for me as I seem to be healing with monthly prednisone bursts as the catalyst to unbind the softening fibrosis and stretch the lung back out. The healing has however exposed some damaged lung causing some issues we are working on.  I found it odd that OFEV hit me so suddenly with acidy loose stool and excessive gas at the 3 month mark. Boom. It was bad enough that it was intolerable  That’s my experience anyway. I know OFEV is supported by many people including my doctor with successful trials to slow fibrosis particularly for IPF patients which I am slightly different than. So don’t let me discourage your use of the drug. I do have a nationally heralded doctor  I consult with who says it doesn’t do anything from what he sees.  But  I tried it because it is said to specialize in targeting SSC autoimmune activity which I am similar to. I also started eating probiotic high quality yogurt in those quick easy little tubs to stabilize my stomach and may unpause the use of OfEv to start again at 100 mg after my colonoscopy if I notice any disease activity developing again. I hope this helps.  I like all feedback and related experiences myself gained in this forum.

[Ben Robinson]

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 years in 2015.  That is why the Trump reference. Nothing political just the basis for my doctor wars self advocacy. I guess you can see why. I do refrain from Political discussions at all times anyway.

[Ben Robinson]

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.

[Ben Robinson]

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 high altitude but he seemed astonished at a lot of things I said. I was his curious case who wouldn’t drink his transplant koolaid.  Hey I am still here and kickin. He said I would be dead in two years. I wonder if he told Trump that LoL I don’t think so.

[Ben Robinson]

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 TV giving it to to Trump. Go figure. I like the format we have now here. It can join in between things when I have time. I find the feedback very helpful in my self advocacy which is essential to our survival. Thanks.

[Ben Robinson]

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.