Jo C. thinking of you today

Joe C.

Jo C., Sorry to read about your diagnosis. I hope the medication can stabilized your symptoms despite the side effect. I will keep you & your family in my prayers.

White Crane

Jo, I am so sorry. You will be in my prayers.

Jo C.

Son David, (Pacific Northwest), has had a serious relapse of his Anca Vasculitis: he had been dc'd from hospital couple of weeks ago and was home recuperating and his kidneys were doing well . . . however; abruptly, his kidneys AND his liver are now showing highly affected by lab and symptoms and he has developed neuropathy in feet and possibly upper ext's . For those who offer prayers, it is appreciated. This in a fellow who is uber healthy, always eats right, exercises, etc. Healthiest one in family until this hit. Probable back into hospital; waiting to hear from doctor. First onset of this condition came out of the blue two years ago and he had done well and was back in full life again. Then it came back about a month ago and was in hospital but doing well enough to return home and was able to be independent inside his home, but not now.

I have my appt. with Pulmonary tomorrow, so will find out more re Ideopathic Pulmonary Fibrosis.. What the dickens in this family; no known history or medical issues for any of this. Thank you for listening.

Caro_Lynne

Jo, you, your son and family are in my prayers. God willing, this too shall pass xo

Iris L.

I'm sorry for the news about David's relapse. I hope his doctors can offer more treatment that he will respond to. I'm still praying for him and you.

Iris

Lorita

Jo, prayers from here for David and you. Hope you get good news tomorrow. Let us know..

M1

Jo this is probably a no-brainer, but i would be sure and tell the pulmonologist about your son's illness. You never know when such facts might be pertinent. Keep us posted and keeping you in my thoughts and prayers.

ladyzetta

Dear Jo, you and David are still in my prayers. Please take care of yourself and get as much rest as you can. Love and Hugs being sent your way. Zetta

JeriLynn66

Keeping you and David in my prayers, as are so many others.

Joydean

Jo so sorry to hear David has a relapse, prayers for David and you and your whole family. Hope you get good news from your doctor tomorrow.

Joydean

telinde

Sending prayers for each of you and praying you will both be in remission soon. Take care Jo.

Jgirl57

Hugs to you Jo C !!!

Larrytherunner

Jo, I'm sorry that you have been diagnosed with pulmonary fibrosis. I want to let you know that there has been research done using montelukast to successfully treat pulmonary fibrosis in animal models. The first study was conducted at Shimane University of Medicine in Japan, using mice as animal models and was published in 2011. The second study was conducted at Bolu State Hospital, Bolu, Turkey, using Wistar albino rats and was published in 2018.

Study from Japan on pulmonary fibrosis

https://www.sciencedirect.com/science/article/abs/pii/S0014299910010666

Study from Turkey on pulmonary fibrosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7018181/#:~:text=Montelukast%20attenuates%20bleomycin%2Dinduced%20inflammatory,agents%20for%20idiopathic%20pulmonary%20fibrosis.

Naturally when you get good results in animal models, you would want to do a clinical trial. Unfortunately this is often not happening for generics because big pharma does not invest in drugs that are not going to produce a profit. Governments and institutions also rarely step in to sponsor a trial. Emory University is a rare exception in sponsoring the montelukast Alzheimers trial which was completed November of last year but still no results have been announced. I suspect that Emory is being pressured not to release the results by certain FDA officials collaborating with major drug makers.

Once Emory's results are released, I think that montelukast will be shown to be effective in treating Alzheimers and also effective in reducing chronic inflammation, which means that it can be used to treat many diseases that increase with age. I think that in the future, it will become standard medical practice for people in their 40s and 50s to start taking montelukast and other leukotriene inhibitors to reduce chronic inflammation and prevent and delay many diseases that come with aging.

Jo, when the Emory results finally come out and suggests that it is safe and effective in treating Alzheimers and therefore, also for chronic inflammation, I think that you could go to your doctor and discuss a treatment taking montelukast multiple times a day. Taking one 10 mg tablet once a day as approved for asthma is not effective since it only has a half life of about 4 hours. Emory was dosing at 20 mg twice a day. I myself have been taking 10 mg three times a day for last 5 years. Before that, I was taking it twice a day for about 2 years.

Currently I have been working here in Ghana with a urologist and treating men with enlarged prostate (BPH). He initially started with 10 mg montelukast once a day which was not effective. Now he is treating with 10 mg twice a day and getting good results. He has proof from before and after ultrasounds that there is significant prostate shrinkage and also most of the men have increased urine flow. In fact it has worked far better than any currently approved medication for prostate enlargement. The doctor was negotiating with the University of Cape Coast Medical School about starting a clinical trial but it fell through because the government started cutting back on the medical school's funds. Now we are talking to a research center in northern Ghana that does a lot of trials on treatments for tropical diseases and has a lot of international donors. They seem interested. BPH is a big problem in low income countries because most of the affected men in low income countries can not afford surgery and the other expensive procedures available in high income countries. These men often end up with serious kidney problems and long term catheter use. An effective medication is very much needed.

My website

www.montelukast-repurposed.org

Jo, I hope you get the right treatment and stay healthy.

Lorita

Hi Jo, hoping everything us going good for both you and David. Both of yoh and Bill are in my nightly prayers. Hope to see a post from you soon with good news. Take care.

Iris L.

Thanks for posting the updates about montelukast, Larry. Many diseases are due to chronic inflammation.

Iris

Jo C.

I do realize this is all off topic, but here I am anyway with friends of long standing who have been in the trenches so to speak. Apologies for the whining . . . .

Well; I went to my first outpt. appt with the pulmonologist who saw me twice in the hospital. Stunningly, a big bust. I have absolutely no confidence in him whatsoever. Third time I have seen him and not any better.

He saw me, there were no basics; not even a blood pressure nor a pulse ox ; did NOT listen to my lungs, nothing. Talked from across the room. Very young, very callow, said to see him again in March and in the meantime I am to have lung function tests and he wants a repeat CT to see how the lungs are doing after Prednisone - that will be two CTs in a month. Said he wanted to keep me on 20 of Pred longer; then said no; will continue tapering off. He has a penchant here in hot weather to wear a heavy open front sweatshirt over his other clothes - it has a couple of easily seen UCLA patches on it - he will share he went to UCLA. Appt day it was hot as the hinges on the gates of purgatory, but there he was with his UCLA sweatshirt wanting folks to know . . . . yep; young and callow and not on the cutting edge. Not going to put up with that as it feels he is not going to be competent moving forward.

Need a Rheumatologist; he said there was one in the building - her website indicates she specializes in osteoporosis and osteopenia . . . . I mentioned I would like someone who could be a "detective" and be able to address the complexity of what I was presenting with - he simply said, "Well; sent patients over there before; I don't know." He was not supposed to be the Pulmonologist I was to see; that one was off at a conference and this one saw me twice in the hospital by default. I know I am whining, but I would like a credible team as it will need careful management as all progresses.

What a shock when just a few weeks ago I was doing fine - until I was not. Busy processing all of this and understanding there is no cure and it will continue to advance. No reason for this - all labs including those for autoimmune issues came back negative.

I am noting more SOB ambulating, but no SOB at rest. Pulse ox in 80's when up and about and feel the SOB; no SOB at rest, but pulse ox gone from 96 and 97 at rest to about 94 consistently.

Guess I will have to contact my primary come Monday and find a way to deal with all of this. I am so tired and wish I had someone to advocate for me; but realize it will be me tired or not. Surprisingly we do not have much in the way of Rheumatology in our area; only a small handful and most deal with much lesser matters and are not inclined to the heavier issues. Go figure. UCLA and USC have IPF Clinics, but they are far too far time weighted distance to use.

Still want M1 and Marta as if they have nothing else to do! Honestly, this has me stumped. Who ever would have thought this as even a possibility much less a probability.

Son doing better than thought - this is a surprise. He received the phone call re his declining kidneys and liver from a NP at his Rheumatologist's office - of course it took him aback to say the least . . . BUT . . . get this; she called the wrong patient and gave him someone elses lab reports! Oh my. He found this out from the physician when he went in for his Retuximab infusion and mentioned his failing organs . . . so; that was something. His kidneys are recovering with a way to go, he is in for a long haul with his chemo and is sticking to best practices in every phase of his life.

DH is doing well post laminectomies and fusions. Pretty much back to normal except his back can get a bit tired if he does too much; he has only been four months post-op; but pretty much himself again for which we are very grateful. What a strange year this has been for a family who usually has nothing going on healthwise. Ah well. Life happens.

Thank you dear ones for listening; my few friends are pretty quiet about this; they do not know what to say is what seems evident and they live a distance.

J.

jfkoc

Not whining!!! We want to have your back...to support and to share info.

Someone earlier mentioned Covic vaccine. I found this and others. Might be worth some online time.

 COVID-19 vaccine-related interstitial lung disease (ILD). An 86-year-old man developed an acute onset of fever, weakness, shortness of breath and hypoxaemia requiring high-flow nasal cannula 1 day after receiving a dose of a COVID-19 mRNA vaccine.

ronald71111

Jo C, you and David are always in my prayers! Lung problems are a bummer. Mine is not as bad as yours, but I do know the frustration. After sleeping with oxygen mine is usually around 97, after being up and around at times it drops to 88/89, after rest it stabilizes to around 95.

Ron

Marta

Jo, you’ve got what it takes to get a good team together to look after you - so wish we could help and give some TLC.

Mint

Good evening JoC . JoC as you said it’s hard right now to be your own advocate, to find the energy, it would be nice if you had someone else to help you. If you have a good relationship with your PCP maybe you could use him as your advocate to get you a consult with a different pulmonologist. My sister worked with a lady whose dad had fibrosis and he was very unhappy with his first pulmonologist like you mainly due to his attitude. So he went to another one and was much happier with that pulmonologist. Believe my sister said his was idiopathic too.

Do you have oxygen to wear with activity? Sounds like you might qualify for it if they did the 6 minute walking test. Activity might be easier with it. Just a thought.

M1

Jo: i agree you should ask about having a six-minute walk test and thereby qualifying for oxygen for use with activity. This is a matter of comfort and is not going to worsen the fibrosis.

Bluntly put, IPF is a bad actor and i am so, so sorry-you needed this like a hole in the head. No known cause and no known cure. I would absolutely, 100% ask for referral to one of the tertiary care centers in case there are research studies that you might benefit from. The other place to research clinical trials is the nih website, clinicaltrials.gov.

I hate this for you. All the more important that you have a knowledgeable, compassionate clinician you can work with.

MN Chickadee

So sorry you are facing this Jo C. What a shock for you. I too have a pulmonologist I hate. But I know what I need to do having seen this person twice and hated every minute of it - switch to someone else. Worth the headache. Between my own health and advocating for both parents through massive medical challenges, I have learned that some providers, particularly specialists, are fantastic and some with the same training are abysmal. Sometimes it feels like I have have third world health care and other times I see someone amazing who does everything they can to help and at least I feel I am in good hands. I get that there is little cure or treatment but that doesn't mean you need to have the whole deal be more stressful than it already is, and having the main physician on this be someone who does not drive you nuts and rather someone you trust is important. I hope you get some rest and are able to face the week with the strength you need to advocate for yourself.

JeriLynn66

Praying for you and David..

Lorita

Hi Jo, just read your post - had been thinking about you today. Sorry things are so rocky right now but you are a go-getter so you'll find the right doctor you can have confidence in. That makes a world of difference. As Ron said, you and David are also in my prayers each night. Prayers and good thoughts really help. Hang in there things will get better everyone is pulling for you. Rest all you can, my friend and feel better.

Iris L.

Jo C I am seeing Arunpal Sehgal, MD. His # is 424-8000 (you know the area code). He is Board Certified in Pulmonary and Critical Care. I am very impressed with him. You might try him. After you copy his info, I will delete this post.

Iris

jfkoc

Thinking of you.

toolbeltexpert

Jo I too am sorry to hear of this dx I agree with your impressions of Mr ucla and would be hard on the search for someone more qualified. I will continue my prayers my friend and your family

Jo C.

Thank you for thinking of me and for all the support which truly means so much. It really, really does.

Has been a very difficult time. Will see my primary today. Scheduled for pulmonary function testing and a walking test later this week which will be a humdinger. Hard to believe just a couple of weeks ago I was doing well and here I am, gasping loudly and horribly with even the shortest walks - scary to even walk to the bathroom - a taxing effort with gasping as mood music. Have to sit down for a few minutes after getting back to the bedroom and wait for the breathing to even out. Pulse ox measurements a bit lower. Seems as though I am in someone's very bad movie; but here I am; it is real. At full rest not nearly as bad; but sometimes in long conversations my voice changes; weird. Exertional dypsnea; no joke.

Terribly difficult getting appts for any specialist and anything else and I have so many to attend which is hard. They want me to see a Rheumatologist asap because this seems to be autoimmune out of nowhere with no applicable history - first "urgent: appt is on December 14; and to my utter amazement none of the multiple rheumatologists see patients if in the hospital. How did I miss knowing that I do not know.

I am pretty much down and out right now but I shall go step by step and see how to deal best with this. Cannot believe that ninny of a pulmonary doc who had one foot out the door during the appt, did no ausculation, no pulse ox - nothing - said to come back in six months - SIX months? On my way to finding a new pulmonologist AND getting an appt before the twelfth of never.

Too bad the center at UCLA for IPF is a harsh, harsh up to four hour horrendous drive away - did it twice for other reasons two years ago and we know with certainty we would never be able to do it consistently. LA Freeways - a constant gridlock nightmare and dangerous.

Got put back up to 30 mg Prednisone per day after being tapered off. Find it interesting; in about five hours after taking it, I begin to feel thick, mutton headed and rather out of sorts - that lasts for several hours and then declines - figured it out as an "effect" after days of the same thing happening the same way and sure enough . . . .will plan day around it. Thank goodness after a few hours the effect diminishes and slides away. Big effect is Prednisone will often not let you sleep - I take the pills about 8:00 am but still . . . night before last, I went to bed at 9:30 pm and not one single wink of sleep whatsoever - awake all night long. Sure did make me far worse the entire next day until about 4:30 pm I was so horribly miserable I decided to take a 0.5 of Ativan to see if I could catch a nap - heavens; it let me sleep for six hours! Felt SO much better afterward. I do not like to use that med, and am very wary of doing so, but that was an amazing help.

Looking for a decent humidifier with remote control that is not too big. Going to see if a humidifier helps at night as IPF can cause coughing; mine especially early morning and sometimes after a meal which is a new thing . . . don't know if humidifier will be helpful but worth a try.

Will need to see if there is a nearby Pulmonary Rehab so I can learn more and get some input on all and sundry. Am not scaring myself with online horror stories. Nuff about that.

Thank you again for listening to me; I am reading on the Forums, but not doing much Posting as the energy is so low. Find myself wishing I could find someone to come into the house for support two or three days a week to give my husband some relief - not fair to him and he is still recovering from his back surgery, but we know how difficult that is to find someone.

Son is still in the throes of treatment for his Anca Vasculitis which is not as effective as quickly as hoped; so he too is keeping on top of things up there in the Pacific Northwest. To top it off; he has a nice house, (divorced and lives alone), and his kitchen had a leak develop in the wall and not seen until all poured into the kitchen - entire kitchen cabinets and all must be torn out and re-done. Just not what he needed with his condition. Had to empty all his cabinets. No one near to help. As he said, he will have a new kitchen by Christmas. How I wish I were in a condition to help - but here we are.

Please take good care of yourselves and know though I may not be visible on the Board; I am reading and absolutely am thinking of all of you.

J.

M1

Thanks for the update Jo, though it breaks my heart. Makes absolutely no sense to me that rheumatologist would not see an inpatient. Broken, broken system that hampers care when the illnesses themselves are hard enough.