[Pamela]

Thank you Christine and Vince! I appreciate the kind words. Vince I like your idea about seeking out the PF Warriors and should be at a meeting this month. I could probably use some anxiety meds, I’m assuming this is ok even if I am on Ofev and Cellcept.

Question for you all, how does IPF or ILD actually “feel” to you? I feel something akin to an ache on the left side of my sternum most days, and an ache under my ribs. It feels very heavy. When I try to breath in deep, I hear something that sounds like a wheeze or like if you rubbed the exterior of a balloon.. very strange sound.

Another question – do you find it easier to breathe in cold or warm air? I was in Germany for a couple of months in 30-55 degree weather, had no issues here, but this first exacerbation happened when I got back to Texas a few weeks ago with its 80 degree weather. I’ve heard the cold is bad for IPF/ILD and especially Scleroderma, but in my case it seems the cold was easier to live in. Can anyone share their experience here?

Thanks to you all for your insight and wisdom, I am grateful to have this forum to ask questions and share perspectives.

[Pamela]

Hello Everyone!  I am on Ofev and I noticed this thread has been around a while, hope that someone here can give me some insight regarding HOW Ofev is taken.  I feel silly asking this question but I am going to ask it…

I can’t swallow pills, trust me I’ve tried everything… I always end up gagging.  Currently I am cutting open the top of the Ofev capsule and putting it on a piece of bread with jam (it tastes bitter).

Outside of the fact that I am probably not getting a proper full dosage, has anyone else done this, is this dangerous?  I am going to talk to my doctor about upping my pills to the 150mg dosage and letting her know how I’ve been taking the meds (been on it a couple months), currently I am on the 100mg twice a day dose.

Thank you in advance for your help!

[Pamela]

Hello Bob,

Thank you for your kind words and your positive outlook!

Even after a year it’s been trying to NOT think about the disease, but I am slooooowly learning how to focus on getting back to my life again.

I found an interesting article about the mind-body connection that has helped me regarding dyspnea, will post it for everyone here:

https://www.blf.org.uk/support-for-you/breathlessness/how-to-manage-breathlessness

Also, I’ve started working with a personal trainer, an Accupuncturist/herbalist, changed ALOT of my eating habits, and ran my personal best in over a year recently.  Let’s see how things go!

[Pamela]

Thank you Christie for the article, I appreciate it very much!
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<div>Hi Lystra,</div>
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<div>You said that the dyspnea gets worse somedays when you burn the candle at both ends, then you bounce back.  Has your Spirometry/PFT tests had a decline, or has your scarring on your CT scan progressed at all since your initial diagnosis?</div>
<div>Do you feel the need for oxygen sometimes?   Do you take a daily or weekly oximeter reading at home?  Mine ranges from 96- 99%, depends on the day.</div>
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<div>Lately I’ve been feeling the base of my lungs ache a lot, and I hear rales more often on inhalation.  I started Ofev about a month ago, have also felt my kidney and my stomach start to hurt a bit.  I read these are a possible side effect of Ofev.</div>
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<div>Hopefully you’ll find a Better Breathers club in your area, they are sponsored by the American Lung Association.</div>
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<div>Thank you again for insight surrounding dyspnea, I will keep you posted surrounded my research on working out/running with an ILD.</div>

[Pamela]

Hello Lystra,

THANK YOU for your response and insight, you’ve helped answer many questions where I wasn’t getting straight answers from doctors.. of course they probably don’t have lung fibrosis, so it is wonderful to be able to get an answer from someone who can relate.

It’s interesting that you also have lung fibrosis caused by Scleroderma.  I have known I’ve had Scleroderma (which presents itself in the cuticles of my fingers as thickened skin) for about 14 years.  I noticed the Scleroderma in my fingers when I developed Raynaud’s.  My doctor, who is one of the best Scleroderma focused Rhuematolgist in the US says I have most likely had the fibrosis in my lungs just as long as I’ve had the Scleroderma in my fingers, so about 14 years, and that the lung fibrosis progressed slowly until last year when I hit menopause.

I am also on Cellcept and began Ofev a few weeks back.  So far I am tolerating them well, some fatigue.  My stomach and kidneys hurt from time to time.

You said your IPAF gives you weird symptoms, what exactly are they?

It’s interesting you said you also feel some days the dyspnea is getting worse and the next day or so it gets better based on your activity level.  Thank you for that insight, it was an “aha” moment for me.  I admittedly burn the candle at both ends and realize on days when I get good rest and am not stressed, I don’t feel as breathless.

I USED to run 8 miles a day, then 6, then 5… now it’s just run-walking 3-5 a day.  This is what took me in to see a Pulmonologist, the fact that  could no longer run long distances. They first diagnosed me with asthma and then found the fibrosis.  I use Albuterol from time to time prior to going for a run, seems to help.

You said you felt down about running “knowing I can’t speed up and it won’t get better”.  I am not convinced of this yet, here is why- I have read of an athlete who runs marathons with COPD, and of another ex-Olympian who has PF and his PFT test actually improved over the years, so I’ve decided to do as much research as possible on people with lung fibrosis who are competitive athletes.  I would like to learn from them on how to manage the ILD through exercise.  I’ve also enrolled in my local Breathing Center, and joined the Better Breathers club.

I agree that it has been a constant battle with fatigue and thoughts that you don’t have long in this world… but then I get in the flow of my day to day and forget I am sick at all.  I agree, the disease has definitely made me lean more on my faith in God, and made me more grateful every day.

Sorry to hear your father is in hospice, thank you for letting me know that they will see to it he does not suffocate to death.  I never thought about hospice as being an end of life care taker for me (I’m in my late 40’s so thinking of death so soon is new to me), but yes, I would think they would help lessen that pain, so no need for me to worry about it.

I agree the end will take care of itself!  Thank you for your wisdom and kind words, God bless Lystra.

[Pamela]

Thank you Karen God bless you for your kind words.

[Pamela]

Hi Roger, that’s pretty incredible that your DLCO increased so much! Mine went down 4% in the last year and a half, I’m still above 70% , but it’s a little unnerving to think about. I started Ofev last week, hoping for similar results as yours.  In regards to hearing about anyone else with Scleroderma ILD, I feel as if I’ve hit the jackpot here finding three other people with this. I have met no one with this type of ILD in real life or virtually, so it’s nice to know you guys exist, very nice to make everyone’s acquaintance!  Thanks Charlene for the information, will have to research this.
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<div>I don’t know of a group specific to Scleroderma ILD but I can share my symptoms and experience.  I used to run 7 miles a day, 5-6 days a week, now I run/walk on average 4 or 5 miles and get winded a lot.  I also have Sjogren’s disease, Reynaud’s, and as of late I have a lot of mucus buildup, that is new.  I lay down at night I don’t feel like I get very good oxygen intake even though I sleep upright.  I take Mucinex sometimes per my doctor’s suggestion to help with mucus.   Question (for all), does anyone walk around sometimes feeling heady or like they are loopy or not completely with it from a lack of air?  If so is that a normal feeling to have with ILD?</div>
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<div><span style=”font-family: -apple-system-body;”>As of late I also have found a number of cysts, one on my thyroid, one on my gallbladder, and recently found an enlarged parodic gland under my ear and above my jawline that thankfully was not cancer. This all happened in the last year and a half and it coincided with when I began menopause, which is also when I began to feel my shortness of breath.  I took myself in to see a pulmonologist.  He didn’t believe there was anything wrong with me at first because my spirometry was in a normal range and I look athletic, I had to convince him to do an examination.  He heard rails at the base of my lungs and soon after got the diagnosis.</span></div>
<div><span style=”font-family: -apple-system-body;”> </span></div>
<div><span style=”font-family: -apple-system-body;”>I manage ok, not on oxygen, I am more anxious than anything, but I still wake up every day and am grateful for life.  I just got engaged a few months back to a great guy who knows all about what is going on with my ILD, so yet another reason to want to find answers and the right medications to live as long and as healthy as I can for as long as possible.  Thanks everyone for your knowledge, I very much appreciate it! </span></div>
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[Pamela]

Hi Susan nice to meet you.  You are the first person I know who has had ILD for a as long as you have, 14 years.   Ofev sounds like it has kept you stable for a few years, so I appreciate the feedback.
I just got engaged to an amazing person and this is another big motivator in my wanting to find the right mix of medication, many things to be grateful for sure.  I am grateful to find others on this journey with Scleroderma- ILD.  I don’t know anyone with this and no one in my family has it, so I’ve been going at this on my own, nice to know I’m not alone in this.  Thank you for responding to my question.

[Pamela]

Hello John thanks for the reply.  I’ve had Scleroderma for 14 years, diagnosed with ILD 1.5 years, but my doctor says I’ve had ILD most likely as long as I’ve had Scleroderma.

You’ve taught me something today- that you can take Hydroxychloroquine, Cellcept and OFEV together, I did not know that was possible.  Sorry to hear about the lung decline in total lung capacity.   My DLCO went down over the last year and it definitely made me stop and reevaluate my life.  I was also unaware of  Rituxamab as a medication, so you taught me two things today, thank you John for the insight.

[Pamela]

Thank you Karen, I greatly appreciate your advice.