Possibly allergic to Esbriet

[paula]

Hi Charlene

Saw the doctor today. He is taking me off the OFEV for at least 30 days. The ever increasing days of loose stools with no relief from any kind of medication for it prompted him to give me a break.

We talked about the bluing of my toes and hands and he said it is from low levels of oxygen and asked me to check my levels when I see them doing it. He asked if it was when I was active and I said not usually.

Currently I am not dehydrated, phew. Said my going off the meds should help with the situation.

The CT……. If I remember correctly (as I am sure you can relate so much information can be overwhelming) he could see a little more scaring but the report said it was better than the one done in 2017. For some odd reason the computer was not allowing him access to the 2017 film. Said he would look at it. I then said, doesn’t the CT report contradict what the PFT showed? He said that the PFT is more sensitive than the CT (they did not do the full level of scan as they do not want to always subject me to the radiation) and stuff will show up on that way before it does on the CT.

Said we are going to wait until I see him next month before we make the move for me to get an appointment in Boston. That will be when we will reevaluate the medication. We talked about the Esbriet but I reminded him that I had the allergic reaction to it. Even when they had me go off of it for two weeks, then when I started back at the lower dosage, within 13 hours, the hives were back. He said something to the affect of having me on the medication to help slow down the progression, hence the month off. I am for the break and to retry BUT if on the retry the loose stools come back like they have been, then I will go off of it. Having constant loose stools will not be good for my body. Not to mention that I am tired of having to go to the bathroom everytime I turn around.

My daughter was asking me a ton of questions and And I get her concerns but I can only tell her what I was told. It was ticking me off. Not sure if that makes any sense but geez I have my own feelings on this situation to deal with.

Off of me. Good luck Susan. I have laughed many times how I never forgot a dosage of the many pills I had to take with the Esbriet but for some stupid reason I would be doing something hit myself in the forehead when I realized I forgot to take one of my OFEV. Hope your family drama has settled down.

Paula

[Charlene Marshall]

Hi Paula,

Thanks so much for writing and for the thorough update! Sounds like you’re “happy” (as content as anyone would be with it) with the doctors decision to take you off the Ofev? I can only imagine how exhausting the symptoms you described from it would be, and how constricting especially. I posted this to another forum member, but I wonder why there isn’t a medication prescribed with the Ofev to help with some of the tummy/digestive troubles? Awhile back I dislocated my shoulder and was given Naproxen, much to my dismay as I hate what that drug does to my stomach. The doctors solution was to just prescribe a “stomach-coater” to help with it, and it actually did. I wonder if there is something like this to help with the Ofev? Just a thought I had.

Are you just monitoring any “blue” episodes and writing down your oxygen levels? I suppose that is what we thought it was caused by, but doesn’t give you any more comfort I guess. Glad you aren’t dehydrated, and hopefully going off the medication will help with that as well!

May I ask why Boston would be making the decision to reintroduce/re-evaluate medications for you? Is this a transplant center, who will eventually consider you for lung transplantation? I’m just curious as the US seems to have more sites that general GPs refer patients to, whereas in Canada, where I am anyways, there really aren’t a lot of “specialty” centres. In fact, only one hospital in Canada does double-lung transplants to my knowledge.

You absolutely have to prioritize your own feelings, thoughts, and questions pertaining to your health ahead of anyone else. So sorry your daughter was playing the “20 questions” game with you…

Any exciting plans for your Sunday? I finished two major fundraiser events yesterday ahead of leaving for NYC this week so I am eager to get caught up on the forums a bit. Those events is why I was a bit “MIA” the last few days. It is bitterly cold here, but beautiful sun… hope you’re getting it too!

Chat soon,
Charlene.

[paula]

Hi Charlene

Thanks for the reply. First off. I did get stuff with the OFEV for the bathroom issues, Sometimes it worked sometimes it did not. And when it did, when it wore off, in some ways it was better. Major gas and stomach cramps.

Boston will not be making the decision to put me back on it. It will be my guy down here. He will be putting me back on it in Jan. He just wants to give my body a rest. And trust me when I say I am so enjoying the lack of need to go to the bathroom every 10 minutes.

I have not been documenting when I get the bluing. He had asked me if it was during exertion and I said no. I could be in the tub or in my recliner. There is no pattern to it. I did tell him on the rare occasions when I did not have my O2 on, and was say walking to the car I would get chest pains that would go away once I put the oxygen on. I told him about the one time that got my attention when I was sitting down, with oxygen on started getting midsternum pain and then started to get sick to my stomach. Thankfully that stopped rather quickly. On the ambulance such events would let us know the patient was getting close to have a full MI (heart attack). My doctor asked me if I had seen a cardio guy in the past. And I said yes in 2015 where they said my heart was fine.

As for Boston. Yes that is where I would go for a transplant. There are actually two hospitals in Boston that can do lung transplants. The guy in Boston I suspect would be the lead guy in making the decision for my going on the list but at the same time he would be working in tangent with my pulmonary guy down here. My guy constantly sends the doc in Boston updates though I have only been in Boston once.

Very cold here. As I suspect it is up there as well. We are going out for Chinese food tonight. Can’t wait. Will also be watching the football games. Not a fan of the team here in MA as I am a fan of the Wisconsin team.

Talk to you soon.
Paula

Oh happy belated birthday

[Charlene Marshall]

Hi Paula,

Great to hear from you, thanks for writing back so quickly and course, for the kind birthday wishes!

Ah, sorry to hear you did get the stuff to help with your stomach when it came to the Ofev but that sometimes it didn’t work. After I wrote you, I actually wondered if this might have been the case. Whether it is consistently running to the bathroom, or dealing with gas/cramps, none of that is pleasant so I am glad you’ll at least have some relief from that…. I bet it is making a huge difference for you, in terms of being able to enjoy your days. Go out and enjoy some time away from home, sounds like you’re doing just that with going for Chinese food tonight. Sounds delicious!

Wow, I didn’t know the blueing was such a random event with seemingly no pattern associated with it. Sometimes my hands/feet get so cold that I swear they must be blue! I’ve not noticed that, but I hate how cold I get on a regular basis now. In addition to the blue, are your extremities really cold as well? So glad your chest pain stops when you put your oxygen on, that would be scary!!

Oh wow, I will be thinking of you when you go in to discuss transplantation with Boston. They didn’t say that was happening in January, but rather a referral would be placed then right? Does it take a long time to get in to see a transplant specialist in the US? Sorry for all the questions, guess right now I am not being any more helpful than your daughter, huh? Haha. Feel free to write back only what you’re comfortable with. Will be keeping you in my thoughts though as you venture ahead to that path.

Enjoy your dinner, like thoroughly enjoy it…. I hope it is wonderful 🙂 then have fun watching the football game. It is freezing here, I actually think I might turn my heat up and jump in the tub to warm up. My body hates the cold as of late, but I think it is supposed to warm up a bit this week. Saturday, when I’ll be in NYC with my Mom, it is supposed to be +12 degrees C. We’ll take it!

Have a nice night and I hope you got the email I sent to you and Ray. Let me know if you didn’t and we’ll try another platform.

Take care,
Charlene.