Possibly allergic to Esbriet

[Charlene Marshall]

Hi Paula,

Thank you so much for taking the time to write out your experience with Esbriet, although I am so sorry to hear what you’re going through! This must be so tough on you, and as you mentioned, the worry of the unknown (cost of OFEV, the other anti-fibrotic medication, whether or not you’ll be able to take it, etc) must be very tiring. Your post was really informative to me, and I am confident that it will help others as well. Thank you again for sharing!

Your experience with Esbriet actually sounds similar to another member of our forum community, who also just discovered he is allergic to this anti-fibrotic medication. He was also advised to go off of it until seeing his pulmonologist this week. I’m going to message him the link to this post to ensure he sees it, as it sounds like the two of you have a similar experience.

I am on OFEV and have never had an experience like this, however, I will be mindful of this and continue to watch my skin for any allergies that might develop.

When do you see your pulmonologist again? If you’re comfortable, will you share what he/she says about possibly being allergic to Esbriet? I’d be curious to learn more about this.

I hope your pain and discomfort from the blisters has subsided a little bit as well? Take care Paula, and please feel free to reach out any time. We’re all in this together!

Warm regards,
Charlene.

[sheila-obrien]

( @justme0956 )

 

Hi Paula

Read your comments with interest as I have just experienced a reaction to Esbriet. Have only been on it since Jan this year and up to now no problems. Rash appeared on neck, arms, face and upper chest. Have always applied sunblock as directed so don’t know where this came from. Doctor gave me some cream and tablets to stop the itch. Also stopped the Esbriet two days ago. Everything calming down now.

Like yourself,  I also felt the drug was making a difference.

Good luck.

Sheila.

 

 

 

[alfred-arnold]

Paula,

I had an allergic response at about the 3rd day in with the 801 mg brown Esbriet tablet. I’ve been off the drug for about 2 weeks and have an appointment on Tuesday, May 2 with my Pulmonolgist.

Hives at first appeared slowly, spreading with each day until they covered every part of my body except my face. The bumps subsided after a few days on Prednisone but the itching continues, especially at night – making restful sleep near impossible.

I called the Esbriet nurse hotline and can agree that the response left much to be desired. A full adverse reaction report, however, was recorded and I’m sure that it will (by law) be sent to the FDA. I posted a photo on a tread posted earlier today. It shows my forearms covered with red bumps, similar to what you would see in the measles.

I don’t know if it was you who commented about a large jump in the cost of Esbriet but I would be interested to know more. I retired from Hoffmann-LaRoche in 1999 after 27 years of service at age 50. Because of this and the fact that Genentech is a Roche company, I don’t pay for the drug.

Kind regards,

Al

[Charlene Marshall]

Morning Al,

Thanks for sharing that you had posted the photo! I wasn’t sure who it was, but thought it might be from your reaction to Esbriet. That looks so uncomfortable, I do hope it subsides for you soon. Hopefully your appointment on May 2nd with the Pulmonologist brings some answers.

If it is suggested that you start the other anti-fibrotic medication, OFEV, would you try that one? It is the one I am on, I’ve never tried Esbriet.

Thanks as always for sharing your experiences with us 🙂

Charlene.

[justme0956]

@alfred-arnold Sorry that you are also going through a potential allergic response to the Esbriet. I have been on it since after Christmas. I was actually doing well on it. Not dealing with the side affects that many seem to have until their body gets used to the medication. Maybe the first issue of what was assumed to be psoriasis was the first indication of a problem. Followed a month later with Shingles (which the pulmonologist I saw last Friday (he is an associate of my doctor) said was a weird pattern for shingles) then a trip to the dermatologist.

Then came the hives on my neck/ears/top of my head. I have been putting a steroid cream on the bumps on my hands/leg and they appear to be going down. I have not put the cream on the hives, which seem at times to be slowly going away. The bumps on my head seem gone. The chapped lips have not changed one bit. I have not taken the Esbriet now for 3 days. I will be calling the doctors office to see if they found a slot to squeeze me in for next week. And I have pictures to bring to my doctor.

Yes, I was the one who talked about the jump in the price. Crazy increase. Almost $800. According to Genetech they did not go up on their price but they also would not allow me to talk to the department that would have that information. That department will only talk to the pharmacy and the doctors. CVS Specialty initially said they did not know why my price jumped and that they had not been notified by Genetech of any increase. This was from the manager of the department who claimed that he only deals with Esbriet and he would be notified by Genetech if there was an increase. Then 2 days later he calls back and says his supervisor informed him that Genetech did increase the price. Quite frankly I think he was feeding me a line of BS. If if is determined that I am allergic to the medication then its a moot point. BUT if this issue is not related to the Esbriet, I am going to ask my doctor if he could call the department at Genetech and get a definitive answer regarding the price. Even though you used to work for the company, you probably could not get an answer on the price either. I think its crazy. Supposedly this is the last year that no one else can make the drug. Wonder how that will affect the price once others can make it.

As for the cost. Right now it is not costing me anything, but once my grant is used up, I will have to pay what my insurance company does not pay. Right now that would be $500.00. If I am still on it the beginning of next year, if the price is the same, then the first month I am looking at close to 3K!!!! Crazy when I am on social security.

Please let me know how you make out at the doctors. And I will do the same.

Paula

[justme0956]

@charlene-marshall Thanks for your response. As soon as I have an appointment set up, some time next week, I will let you know.

Not a problem with telling you what the doctor has to say. Given all of my allergies, I will not be surprised if it is determined that I have developed an allergy to it. I believe they have me at the max level. 267mg X 3, 3 times a day = 2403 mgs a day!!! As indicated above, the drug seemed to be doing what we wanted it to be doing. I can say it seems as though I am starting to cough a little bit more. Time will tell.

Will answer all of the other questions after I have my coffee which just finished brewing. lol

Paula

[Charlene Marshall]

Hi Paula,

Thanks for your willingness to share what the doctor says when you see him/her regarding this reaction. I’m curious to find out, as an allergic reaction to the drugs we need “seems” so rare, but based on your experience and Al’s, I don’t think it is. It would be a really good, informative topic for others to know and be aware of.

Enjoy your coffee … I am also just about to grab mine 🙂

Chat with you soon,
Charlene.

[alfred-arnold]

Paula,

I was not aware that Esbriet was going off patent soon, but a bit surprised that Genentech bumped up the cost to the patient since it is an orphan drug and can’t imagine a generic manufacturer going after the relatively small revenue it could capture.

The last 4 years of my career I worked for a pharmaceutical contract manufacturer. I’m quite familiar with reformulation of a brand into a generic. While the active ingredient must be identical to the brand, the various non-active ingredients (excipients) most certainly will not be identical. The burden of proof of equivalency is far less stringent – and thereby less costly – than what is required by FDA to sell the approved drug in the US.

IPF was a fluke diagnosis (at age 69) in December 2017. It followed 6 months chemo to treat recurrence of prostate CA. At the end of therapy I had a CAT/PET scan to determine if it was effective. Fortunately the CA seems to be in abeyance but 3 other medical conditions were identified: hyperthyroidism, coronary artery disease (CAD) and IPF. IPF was later confirmed via high resolution CAT scan.

I have a regular follow-up visit scheduled tomorrow with my Pulmonolgist. We will be discussing restarting Esbriet. I’ll post results of this visit.

Kind regards,

Al

[Charlene Marshall]

Goodluck with your follow up Al, I’ll be thinking of you!

Charlene.

[justme0956]

@alfred-arnold From what I was told. Esbriet received its FDA patent 2014. From what I have been told, that patent is only good for 5 years. After that other companies can make the drug. Kind of figured about the other ingredients. If I did not get a grant, there is no way I could pay for it. Not sure if I will qualify for it this year. We shall see.
I was diagnosed Feb 2016. That was after a 4 day stay in the hospital in Dec because what they thought was pneumonia was not healing as it should. And here I am now.

Good luck at the doctors.

Paula

[Charlene Marshall]

Hi Paula and Al,

I am finding your correspondence about Esbriet and the patent’s, manufacturing information so interesting! This is something I have not yet had the energy to explore, ie. the history of our anti-fibrotic medications and where they might be headed in the future. I know OFEV was actually just approved for coverage in Canada the first summer I was diagnosed (2016), which was big news that was applicable for me in the beginning. I’ve not thought much about it otherwise, but appreciate your bringing this to light for me.

Please excuse me if this is a silly question, I truly just don’t know the answer but Paula, if the FDA patent for Esbriet is only 5 years, does this mean other drug companies could issue Esbriet, potentially making it more readily available for patients? Then perhaps the cost might be driven down for patients due to it being more available (ie. not as scarce, difficult to get) ? Just something that ran through my mind as I read your wonderful response.

Thanks again for sharing to both of you, I’m learning so much!

Warm regards,
Charlene.

[justme0956]

@charlene-marshall While I would like to be surprised at having a potential allergic reaction, my reality is that 5 years ago I fell into the 4% of being allergic to Titanium. There are very few bandages I can use because I have such an issue with them bothering my skin.

I do not know much about the drug your on. Is it like Esbriet? Being very expensive? Esbriet is close to 10K a month. Without a grant, there was no way I could afford that drug. So my question to the doctor would be if they were aware if there is any help to pay for the new drug. Another question would be are the two similar enough that I might face yet another allergic reaction?

The other thing that concerns me, my friends say not to worry, but its not them that might be facing a lung transplant. Would I have to worry about developing an allergy to the anti-rejection meds?

I am curious, do other members get to see these postings? Maybe I am missing it somewhere, but I remember looking once or twice to see what topics others were talking about but could not find where such a list existed. Thanks for your help on this.

Personally I love these places. Everyone here gets it. Family and friends try to understand but there are just some things that they just do not get. Not a dig at family or friends but some times they just not get it.

Paula

[Charlene Marshall]

Hi Paula,

Thanks again for your reply, although so sorry to hear that you’ve had so many troubles with allergies. That must be frustrating for you. I have issues with my skin when I use Elastoplast bandages but so far that it is, although I do notice an increased sensitivity (& dryness!) in my hands since my diagnosis and starting the anti-fibrotic medication. Although, it sounds like you’ve struggled with allergies for quite some time now?

OFEV is the only other anti-fibrotic medication FDA approved for slowing the progression of IPF. I would imagine it is similar to Esbriet, although I don’t know the differences as I was never offered Esbriet. It is expensive when issued, although thankfully I don’t pay  much out of pocket for it. This is for two reasons: a) my Mom works in healthcare and knew to write our pharmacy/drug company (I forget which) a compassionate care letter due to my age when diagnosed (28). I have tons of debt from University, as I completed both an undergraduate and Master’s level degree, had just bought a house, etc. As a result of this, I was devastated and angry that I would have to now pay for a drug that would let me live longer with a rare disease I never should have had in the first place, having never smoked, always been active etc. There were conditions to them giving me a grant to cover the medication, but they give me a monthly allowance for it through their compassionate care program. Then between my work benefits and OHIP, the amount I pay is actually minimal and I am so thankful for this!

Regarding the lung transplant anti-rejection meds, I think this is a valid fear Paula. The good thing about this is, from what I understand, there are multiple anti-rejection medications and combinations, so hopefully if you did have to consider this and developed an allergy, that there would be other options for you to try.

Other members can see people’s posts yes. Is that what you mean? You should be able to see all the threads and forums on this site, as I’ve recently just made them all public (meaning only people who have registered for the forums can see them, not the whole internet, and I monitor registrations). Does this help?

I completely agree with you re: the benefit of these forums! Friends and family try to understand, but there is just an element of understanding that they don’t get, no matter how hard they try. I’ve found a lot of comfort and support from this forum, and I am glad you’re enjoying it as well.

Take care,
Charlene.

[justme0956]

@charlene-marshall. Thank you. In regards to other threads/forum is there a specific place that I could click onto that would show what is being discussed and then I could click on to that topic and read/reply?

From what I have learned about IPF and I am still learning, as is the doctors. Is there is not really a clear indicator to the cause. Yes there are some things that can cause it to flare up but, even if your exposed to various substances does not mean you will get it. Hence the name IPF. I can tell you that while I did smoke at a younger age, I have two cousins that also had IPF. Which the doctors in Boston were very interested in. There is a blood test they want my doctor to do, not sure what they are looking for but if it provides some kind of marker for those who might get this, I am all for it.

As I stated, 2 of my cousins also had IPF. One passed away shortly after being diagnosed the other had a lung transplant 6 years ago. 2 years ago it looked like she was rejecting the new lung but then things got better. She will now always be on O2. Something that she was able to get off of after the transplant but with the incident 2 years ago…. It is what it is. The fact that she is able to basically do many things, even with the oxygen is way better than going into full rejection and because of complications she had when she had the transplant she is not a candidate for another lung.

In answer to your question regarding the patent. From what I have learned, when a company develops a new drug, and after it goes through all of the trial steps and finally gets FDA approval, no other company can make the same type of drug for 5 years. As Al pointed out, which I was unaware of, is that these generic drugs are allowed, while they will have the primary active ingredient, the other chemicals will be different which is why they can offer them at a lower price. (Do I have that right Al?)

If it is determined that I am allergic to the Esbriet, and if my doctor feels that putting me on the drug your on (which the only other drug here in the US for IPF) is my next course of action, then it will come down to whether or not I can get grant money to help pay for it.

I have been off the meds for 4 days now. The hives are slowly going away. Don’t even feel them on my scalp any more. I have had a couple of coughing jags that I have not had in awhile. So we shall see.

Sorry that at such a young age you were diagnosed with this horrible thing. Bad enough for us “older” people lol but your just starting your life. We often hear a lot about the health care system in Canada. In some ways it seems far better than what is down here. Although I have heard a few negative comments about it. Not sure on the validity on these comments. Is it or has it been a big issue for you to get treatment that you need? Did you have to go through a big process to be allowed to take this med?

Paula

[Charlene Marshall]

Hi Paula,

Your question is a great one as we’re in discussions “behind the scenes” about how we can make the forums a bit more user-friendly and/or organized for members. I’m not sure if this explanation will be helpful, but I hope so….

The way this site is organized is by forums (which are what is listed when you are on the forums homepage. They are titles like: Using Our Forums, Join the Discussion: Welcome to all PF/IPF Patients, or Caregivers and Spouses, as an example. Within each of those forums are the threads and within those threads is where discussions take place. When coming onto the site you should be able to click open a forum and see a list of threads that fall under that forum. Then once you open the thread, you should be able to read everyone’s discussions. To my knowledge there isn’t a way to manoeuvre the site so you can “scan” the discussions and select which ones to respond to. Is this what you’re hoping for? I can ask our tech team if so and see what I can find out for you. Not sure if this helps answer your question? 🙂

Thanks for helping explain a bit more, and for sharing about your cousins. There is some research going on about familiar IPF and/or genetic links to this disease. Actually, we have a researcher on this site who is involved in that work, which is pretty cool. I think she shared more details about this in the Research and Development group, feel free to check it out. It might help give more insight into why you and your cousins both had it? My doctors wanted my siblings to get tested as well after I was diagnosed, because we have no history of any lung diseases in our family. I don’t think they followed up with this, but can at any time. If I may ask, were your cousins very old when diagnosed? I am somewhat fearful because the doctors told me that due to my age, they admittedly have no idea how my disease will manifest in terms of its progression. They said it could be slow or fast, and within 6 months of my diagnosis I was prescribed supplemental oxygen to use as needed, which has slowly increased to pretty regular use. I just become so fatigued and short of breath without it!

Hmmm that is so interesting to learn re: the patent and potential re-distribution from other drug companies of Esbriet, even if the formula is a little different. While the active ingredient is the same, might there be a chance that the combination of other parts of the medication will not cause an allergic reaction for you? I know this doesn’t help in the moment, but something to consider, or do you suspect the active ingredient due to it being the same is likely what you’re allergic to? All excellent questions! I certainly hope there is a good alternative for you, which will continue to slow down the progression of your IPF….

Generally speaking, I think we’re pretty lucky in Canada in terms of healthcare but it definitely is different than the US. The biggest challenge (in my experience anyways) is the wait times it can take for diagnostic testing, specialist appointments, etc. I’m not sure if this is the same in the US? From my understanding, in the US if you needed to see a specialist or have surgery, if you can afford to pay for it, it can be done pretty quickly, is that right? Since it isn’t like that in Canada, the struggle is that right now my wait to get an MRI is over 2 months long. I’ve had a few tests ordered ‘urgently’ and been able to be seen quickly, although this never feels good as it usually means something is seriously wrong. I also saw one of my specialists back in early February and the earliest I could see her again was May 30th…. not sure if the wait times are similar in the US? This is really the only complaint I have.

So far it hasn’t been much of an issue to get the medications that I need, although I am thankful for my Mom’s knowledge of compassionate care grants through certain drug companies. I do get the treatment I need, although everyone’s response is always the same: “You have IPF and you’re only 30!?” .. usually I give them an eye roll (out of humiliation, not anger) and nod. Otherwise I don’t have too much I can complain about health-care wise.

Sorry for the long response… hope you’re having a great day! 🙂
Charlene.

[alfred-arnold]

Paula/Charlene,

Back from my Pulmonolgist visit. Nothing unusual to note. Liver function tests all in normal range. Discussed going back on the 267 mg small tablets. Will start again with 3 tabs/day for 2-3 days, then increase to 6 tabs/day for a few days and finally back to 9 tabs/day. Will not go back to 801 mg tablets.

Blood pressure slightly elevated. Oxygen saturation at 98%. Lungs sound good.

Next visit scheduled in mid-July. No additional recommendations.

Absolutely beautiful day here in the Northeast…Spring has arrived! Went for long walk with shorts and a T-shirt. No problems encountered…feel well.

Al

[Charlene Marshall]

Hi Al,

Sounds like a great day all around for you, I am pleased to hear it!

Did the doctor give you any indication that this type of allergic reaction has happened to other PF patients that he treats? I’m surprised the doctor had you go back on them so quickly, but I suppose the slowly increasing dose and the 9 tabs/day is likely different than the 801mg tablet.

So glad the blood pressure was not too bad, and your saturation is great. Does it change much for you with exertion, or have you noticed?

It was absolutely beautiful here today as well! It felt as though we launched into summer and skipped spring altogether, which I am fine with generally. However, I just made a post earlier tonight about the change in weather from about -5 here on Saturday evening to +28 today… my lungs didn’t like it much, and I ended up leaving work early due to really unpleasant symptoms. Other than possibly getting sick, I don’t know what else would have caused this reaction. It was quite frustrating! That being said, I still enjoyed the breeze and sun with my bedroom window open as I caught on up on some quieter tasks.

Glad you had a great day and thanks for sharing it with us!

Charlene.

[justme0956]

@alfred-arnold. Awesome news. I do the 267. 9 pills a day. Well I was until last Friday. Excellent saturation rate. So do they think you were having an allergic reaction to the meds? I guess that would be no since they are going to put you back on it again. Any idea why you had the reaction that you had?

Your in the northeast? Me too

Paula

[Charlene Marshall]

When did you say you go to the doctor to ask about your reaction to the Esbriet, Paula? Just so curious about this from both your and Al’s experience.

Charlene.

[alfred-arnold]

Paula,

Definitely allergic reaction. Most probable cause – An excipient of the 801 mg Esbriet tablet (not the active ingredient). Will never know at 100% assurance.

I live in North Jersey about 30 minutes west of midtown NYC. You?

Al

[justme0956]

alfred-arnold. So the ingredient in the lower dosage would not have the same ingredients as the 801?

I live near Cape Cod about 45 minutes from Boston
Paula

[Charlene Marshall]

I love both of your areas of residence – a beautiful part of the US! I spent my summers in New England for three years while I worked in the US for a summer camp. I absolutely love Cape Cod, many beautiful memories there with international friends who worked with me from around the world. I was just in NYC & NJ again this past December, and Boston a couple of years ago…. wonderful cities! 🙂

Thanks again to both of you for sharing your experiences with Esbriet. I know others, like myself, will appreciate learning about potential allergic reactions and what those symptoms are.

Regards,
Charlene.

[justme0956]

@alfred-arnold and @charlene-marshall

Saw my doctor yesterday. He is putting me back on the Esbriet starting this Friday. I will start off by taking 1 pill 3X a day. The next week, I will be taking 2 pills 3X a day and by week 3, I will be back to my original dosage that being 3 pills 3X a day.

We discussed the pathology report done by Mass General. They obtained some of the biopsy taken last June. They can not say that I do or do not have IPF. Some things point in that direction, others do not. The stuff they brought up has already been addressed by my doctor, that being I have not been exposed to molds and such. And I have not been exposed to bird droppings. The first time my doctor came up with those possibilities it was discovered, according to the blood work done before the biopsy, was I am allergic to Pigeon poop. lol.

The blood work that my doctor did last spring, indicated that I had scardosis. My doctor was psyched because according to him, it was more treatable than IPF and it brought down the probability of a transplant way down. But the biopsy completely ruled that out. After the biopsy, my doctor put me on methotrexate which is used for multiple health issues so I was told.

The theory was if I did not have IPF the methotrexate would help with my symptoms. It did not do anything for me. The decision was then made to put me on Esbriet.

Ironically, the doctors at Mass General all agree that Esbriet is the correct medication for me. While discussing this with my doctor (what the doctors in Boston was saying) I said “If what they are suggesting might be the cause, is it safe to say that the methotrexate would have been effective?” and he said yes. We then discussed how we had already ruled out what Boston was suggesting.

We then discussed a blood test Boston wants my doctor to do because of the fact two of my 1st degree cousins also had IPF. One passed away and the other had a transplant 6 years ago.

We discussed the % of people who develop an allergy to the Esbriet. I looked at him and said “Well you do remember that I fell into the 4% of those allergic to titanium.” He remembered.

So he will order the blood work, for some reason the request from Boston was never forwarded to him but the doctor put it in the letter that he sent me. I will start the Esbriet this Friday. If I have another reaction then we will know for sure that I am allergic to the meds. If that happens he will then put me on the other IPF drug (sorry have not had my coffee yet, brain is not in gear)

I see my doctor in June. Go over the blood tests and then set up another appointment with Boston. My doctor asked why I have not been back to Boston, I told him, I could not justify going up there since nothing more had been done, so after the blood test, then there will be something to discuss up there. My doctor wants me to go to Boston once a year to keep them in the loop.

So that sums up my visit. Fingers crossed that the allergic reaction was not from the Esbriet itself,but the after affects of the issue with my skin (they say its exzema which I have never had before), and then shingles.

How are things going with you Al? I know its still early to tell if the change in dosage will help. But you definitely have been on my mind and I did bring up your reaction to my doctor.

[Charlene Marshall]

Hi Paula,

Thank you so much for getting in touch with us and letting us know how your appointment with the doctor went. Sounds simliar to Al, in the sense that your doctor chose to put you back on the Esbriet. What an interesting thing to do if they cannot determine with certainty that it is IPF. Are you concerned at all that if it isn’t IPF, you’re taking a relatively intense anti-fibrotic medication? This isn’t to say you should be, it is just a question that popped into my mind as I was reading your response…

My friend was actually just diagnosed with sarcoidosis, and her doctor also sounded relieved that it wasn’t something like lymphoma (which they were investigating at first), IPF, etc. Interesting how they see chronic illnesses in comparison to others. Were there any side effects associated with the methrotrexate? This is something I am in discussion with my doctors on the regular about going on and I just don’t even like the sound of this drug’s name!

Keep us posted on how the re-introduction to Esbriet goes, and I certainly hope for your sake that you do not have another reaction. I know it was unpleasant for you. The other anti-fibrotic for IPF is called OFEV, and this is the medication I am and have been on.

Is it the transplant team that you’re referring to when you mention your team in Boston, Paula? I would imagine they can do more comprehensive testing than your doctor can, which is why he wants you to keep them in the loop. This is just an assumption on my end though…

I was glad to hear from both of you today – you’ve been on my mind!
Take care,
Charlene.

[alfred-arnold]

Paula,

My doctor is also putting me back on Esbriet with the small white tablets, stepping up the dose as you described.

My rash has completely cleared, but itching is still with me. My primary care physician put me on another course of Prednisone which ends on May 14.

One other thing my wife found that may be causing the allergic response is that I am on Prolia as part of my hormone therapy for metastatic prostate cancer. Prolia injections are given to me 2x/year. My last injection was about 3 months ago. I’ll have to look into this further and discuss it with my Urologist.

I hope restarting Esbriet does not cause you further problems.

Al

[Charlene Marshall]

Hi Al,

Thanks to you also for keeping us posted on how you’re doing! Was the prednisone for alleviating the itch from your rash? I hope it isn’t because you’re unwell with some sort of respiratory illness/virus!

Interesting catch from your wife about the Prolia being the culprit as well…

Take care Al, and chat soon.
Charlene.

[justme0956]

@alfred-arnold. I think my doctor is hoping that the reaction was the result of all of the other stuff that was going on. So we shall see.

I too also have the itching, but I think that is more from the Exzema and from the shingles which I was told takes a long time for all of the stuff, itching, scabbing, and pain to go away fully. One can hope.

I called the doctors office this morning to tell them the name of the blood test Mass. General wants to be done. Not sure why they did not do that when they did blood work back in Dec. No big deal.

Interesting potential reason for your reaction, that being your having the Prolia.

Ugggh on the prednisone. I told my doctor yesterday that I do not want to go on that stuff ever again. The fat fairy will find me for sure, and I am all set with that. lol

[Charlene Marshall]

Sorry Paula! I responded to your post earlier, and realized some of the answers to my questions were in your second post 🙂

I had shingles not that long ago as well, and thankfully I did not experience the nerve pain issues that came with it (lucky for me: this nerve pain actually came from something else….can you sense the sarcasm?) but I did have the itching! It took awhile to go away, so I hope you can get some relief soon!

Thanks again for such a thorough update, I’d been thinking of you!
Charlene.

[justme0956]

Hi Charlene
No I am not worry about the meds as I have been through this before with the doctor thinking I had sarcoidosis. Like your friends doctor, mine too was at first very happy to think I had sarcoidosis over IPF. As he put it, was easier to deal with. The chances of needing a lung transplant dropping quite a bit. But the biopsy which they took 3 relatively big samples eliminated any thoughts that I had sarcoidosis.

Plus the medication they tried me on before the Esbriet, if the biopsy was inaccurate, the meds would have helped. They did not. Where the Esbriet is/was doing its job. Ironically Mass. General wanted me to stay on the Esbriet.

I think, like in Al’s case is by putting me back on the Esbriet, if I have another reaction then we know for sure that the problem is with the drug not the other stuff.

Just another day in paradise. lol. I have always been one that never follows the norm. Kind of ironic given when I worked as an ALS EMT, what I loved about the job the most was you could have 10 people with the same diagnosis and yet they all present symptoms different. Definitely keeps you on your toes. So while I get frustrated with the back and forth as to what is going on, I can accept it because I know how I do not follow the norm when presenting symptoms.

My primary once listened to my lungs said they sounded great. Then just before he walked out, I started coughing. You know the type. Like there was a bunch of junk in my lungs. He stopped, turned and looked at me and said “You are such a mystery.” I laughed. Then said that one of my doctors put it best when he said I was an enigma.

Some times you just have to laugh.

[Charlene Marshall]

Hi Paula,

Thanks so much for getting in touch and sharing your experience with me re: your suspected diagnosis of Sarcoidosis. My friend is struggling with this diagnosis a bit, understandably, having never been sick before and not experiencing shortness of breath. She told me how scary it was, then realized that I could truly relate…then we both had a cry! Glad you aren’t worried about the meds, and that absolutely makes sense that the other meds you were on, if you didn’t have IPF, would have helped. That is a good point to remember for sure, and instill your confidence in going back on the Esbriet despite another possible reaction. All of this said, I wish for you (and all of us!) that we weren’t dealing with anything IPF-related at all…

Let us know how the re-introduction to the Esbriet goes. I think if I remember correctly, you re-start it tomorrow?

I had a bit of a chuckle at your comment, “another day in paradise”… if we can’t find humour in some of this, what do we have, right? What an interesting career you would have had as an EMS! I work with children often either with mental health needs, health-related issues or a diagnosis of a disability and I often say that about the children I support. Their diagnosis can be the exact same, but how they respond and interact with the world can be entirely different. I guess that is what makes us unique, and what makes the world go ’round, right?

I wonder how many of us have also been told we’re mysteries…. I was told this as well by my respirologist when he was trying to sort me out, because “I was too young to have PF”. At least we keep them on their toes right? 😉

I hope you’re doing well, and thanks, as always for contributing such a thoughtful note!

Warmest regards,
Charlene.

[justme0956]

Morning Charlene and Al
I started taking the Esbriet again yesterday morning. 1 pill 3 times a day. First pill was around 6:30 AM. By 7 PM the itching started along with the redness.

By 8:30 PM I was talking the anti itch meds the doctors gave me before as the OTC does not really make a dent. Less than 2 hours later, I was putting anti itching cream on my neck to try and get some relief. Back up at 4 AM to take the meds again.

The redness is on my right side of the neck and in the front of my neck. Looks like I was out in the sun and got a sun burn while wearing a shirt. Slightly warm to the touch and very itchy. I just put a cool compress on it to try and help with the itching.

Sooooooooo I am going to stop the meds again and will call the doctor Monday.

From what I have read, after you have experienced a allergic reaction, the next time your exposed your reaction could come much quicker.

This bites but……… we shall see what they come up with.

[Charlene Marshall]

Good morning to you too, Paula!

Thanks for getting in touch, although I am so sorry to hear that the re-introduction of Esbriet brought back the itching and redness. Gosh, that didn’t take long after re-starting it, did it? Such a bummer for you!

What was your doctors advice on if this happened again? I noticed that you said you were up at 4AM to take the meds again, this wasn’t more Esbriet was it? Or did you mean the anti-itching medications? Were you to stop taking the Esbriet again right away if the itching or redness returned?

The reaction/rash sounds so uncomfortable. Is it only on your neck? I hope the cool compresses give you some relief, along with the anti-itching meds they prescribed. Gosh, what a tough time for you!

Please do let us know what the doctor suggests on Monday when you call. I wonder if the same ingredient you’re allergic to is in OFEV (the other anti-fibrotic medication) as well, or whether they will switch you to that?

Best of luck and sending you lots of warm thoughts! Keep us posted on how you’re doing if you can…
Charlene.

[justme0956]

Hi Charlene
No I was taking anti itching. I think my doctor was hoping that there was no reaction this time around. Just said if I reacted again then we knew it was the medication.

He did not say what to do if the reaction occurred again, I just know that I am not going to take it until I talk to him.

He did say that if I reacted again to the Esbriet then he would try the OFEV.

Just had my husband take pictures so I can show the doctor. Looks like I have a sun burn with blotches as if I was burned while wearing a shirt. crazy

Will keep you updated.
Thank you for your good thoughts.

[Charlene Marshall]

Hi Paula,

Thanks for getting back to me. Just wanted to let you know that I’m thinking of you as I believe you said you’re calling your doctor today (Monday?) about the second reaction to Esbriet… please let us know how it goes if you can!

Hopefully you found some relief over the weekend from the itching? Did it subside at all once you stopped taking the Esbriet again? Sorry for all the questions!

Goodluck with starting the OFEV. My side effects when I started it weren’t too bad, thankfully! Am definitely thinking of you …

Charlene.

[justme0956]

Hi Charlene
Thanks for your concern. I talked to my doctors nurse a short while ago. He is working at the hospital today but she sent him a message and he will call me. She said to stop the medication which I have already done.
Sadly no it did not stop, itching etc right away. I still have the redness that is still quite itchy. My bottom lip is so chapped right now that it has literally cracked down the middle. Nothing I do is relieving it. auuuuuuggggghhhhh.

So now I wait for the next step.

As I stated before: Never a dull day in paradise. lol

[Charlene Marshall]

Hi Paula,

Good to hear that you’ve been able to connect with the nurse already, and I do hope that the doctor gets back to you soon! Glad you stopped it on Friday as soon as the reaction started, so that you weren’t having to deal with an even more intense reaction by taking more medication doses. The current reaction sounds so uncomfortable, I am so sorry to hear this! Since you stopped the medication a few days ago, I really hope that the side effects from the allergic reaction subside soon! How terrible for you 🙁

I’m thinking of you and sending healing thoughts. Please let us know what that next step is, and wishing you much relief soon. xx

Charlene.

[alfred-arnold]

Hi Paula/Charlene,

Sad to say I restarted Esbriet 267 mg tablets on May 17 and had to stop on May 31. I started as follows:

Thursday 5/17/18, 1 tab/2x, Fri – 1 tab/3x, Sat – 1 tab/3x, Sun – 2 tab/3x, Mon – 2 tab/3x, Tue – 3 tab/3x, Wed – 3 tab/3x. Thereafter 3 tab/3x until May 31.

Rash (hives) started again with itching, primarily in areas prone to sweating – underarms, chest, groin. On June 1 I went to my family physician because it looked like a yeast infection was starting in the genitalia. I was prescribed Clotrimazole and Betamethasone Dipropionate Cream (antifungal). After 2 days the burning and build up of white material (yeast?) subsided, but the hives remain. I had an additional complaint on Friday’s visit – a blocked right ear for which I was prescribed Debrox (Carbamide Peroxide 6.5%) to remove ear wax. So far the blockage remains and I have only partial hearing in the right ear. I will probably go back Monday to have the ear irrigated and flushed out. I started using the cream again prescribed by my Dermatologist for the hives (Triamcinolone Acetonide). I will refuse to take Prednisone again.

I’m not sure this episode is related to Esbriet, but I have stopped taking it and will not continue with this drug. I’ll talk with my Pulmonolgist on the next visit (July 24) to see if he wants to switch me to OFEV. I am not having any other symptoms related to IPF at this time. No shortness of breath or dry cough. My oxygen saturation is holding at 98%. Even though the high resolution CAT scan indicated IPF, I still wonder if the diagnosis is a false positive or if I am at the earliest part of the condition and not showing outward symptoms.

Al

[Charlene Marshall]

Hi Al,

I am so sorry to hear your second experience with Esbriet was not more positive. What a hard thing to experience! Those symptoms sound very uncomfortable and too coincidental I imagine with the starting of Esbriet again. Did your family doctor suspect there was a link? Unusual to hear of the blockage in the ear, although I would imagine this wouldn’t just start up at random, but I certainly could be wrong. I hope getting it flushed out helps with comfort and that your hearing is restored. Do you find the cream for the hives effective last time? I do hope it is this time as well!

Good idea to chat with your doctor about starting OFEV, or whether you need to be on an anti-fibrotic medication if you aren’t symptomatic. I know they are important, I just hate that you have such a bad reaction to the one, and are dealing with that when you have no symptoms of the disease itself. Definitely worth a conversation with the pulmonologist. I hope you’re fully on the mend soon Al, and thanks as always for writing to share your experience with us.

Kind regards
Charlene.

[justme0956]

Hi Al

Sorry about your reaction. I got 13 hours into taking the Esbriet and broke out in hives. The hives went away within a week. Still dealing with what they claim is eczema. So I put a steroid cream on that. Slowly it seems to be going away.

Like you I have told them that I will not take the prednisone. Did not really see any benefit and it was working in cahoots with the fat fairy. lol

My pulmonary doc told me to stop taking the Esbriet which I had already done. He is working on getting me on the OFEV. In the mean time the SOB is slowly getting worse. as is the coughing. My saturation rate is in the low 90s.

I have had so many different opinions of what is going on. Mostly because in many ways I do not follow the normal trend of what is seen on IPF. But the biopsy said I did have it, I have a family history of it (2 first cousins) and the mere fact that I never do things text book.

How are you feeling otherwise?

Paula

[Charlene Marshall]

Hey Paula,

Gosh, I’m so sorry both you and Al experienced the hives so quickly after starting Esbriet. I agree re: the Prednisone…. this is a terrible medication, and if other steroids/topical ointments will have the same effect, I’d much rather take those. Glad the cream seems to be helping your eczema.

Have you noticed a difference in your SOB and dry cough, even since stopping the Esbriet? If so, that happened quickly so I hope they can hurry up and get you on another anti-fibrotic medication so slow down any progression of the disease.

Best wishes to you!
Charlene.

[susan-w-lyon]

Hi Charlene, Paula, Al and all,

Thanks so much for all the useful information in this thread. I also have had what seems to be an allergic reaction to Esbriet.

After a few days on the lowest dose of 1vtab 3xdaily, I developed a flat red nonitchy rash on my lower legs. I called my pulmonologist, who said keep going, but stop if the rash gets worse. The second week, the dose increased to 2 tabs 3xdaily, and within two or three days the rash was significantly worse, so I stopped. That was 10 days ago. The rash is still there. Last night I put some 1% hydrocortisone cream on it, and this morning it seems to have faded a bit.

My doctor will start me on Ofev, but for now I’m not on anything.

In the meantime, I’ve had an allergic reaction to one dose of Bactrim (for a UTI), which I’ve had many times before. In my whole long life (78 years), I’ve never had a drug-induced rash before! When the pulmonologists were sorting out whether I had hypersensitivity pneumonitis or IPF, I had a course of prednisone and CellCept. Has anyone heard of that making you more at risk for allergic responses? It all seems a little mysterious.

Just wanted to add another variation of allergic responses to the thread. Thanks again for all the helpful info.

Best regards,

Susan

[Charlene Marshall]

Hi Susan,

Thanks so much for writing and sharing your experience with us re: allergy to Esbriet. I certainly wish that wasn’t the case for you – how frustrating! I am glad to hear the rash seems to have faded a bit with the hydrocortisone cream. Did it remain non-itchy for you, like you had said it was in response to the 1 tablet daily or did it become worse? I also can’t believe your reaction to the antibiotic for a UTI, that must have been upsetting for you, especially as you say, you’ve never had any type of drug-induced reaction before.

Unfortunately I haven’t heard of people on cellcept and Prednisone being more susceptible to reactions, but something to put out there to folks for sure. There are some people on our forums who are on those combination of drugs right now, and they might have something to contribute?

Hang in there and let us know how you make out with the Ofev. I am on it and so far (fingers crossed) I haven’t had any issues with it, but I know others have.

Looking forward to hearing from you again soon.
Charlene.

[justme0956]

@Susan W Lyon. Sorry to hear about your experience with Esbriet. I am not sure that IPF makes you more at risk for allergic reactions as I seem to be having issues with a lot of stuff. 5 years ago I found out (after back surgery) that I was allergic to titanium. They had to take the rod out. Lucky me I fell into the 4% of people who have issues with that metal.

I know when I had the issue with the Esbriet it came on the heels of getting shingles. They had me go off the esbriet for 10 days. Then restart it again at the low dosage. within 13 hours of taking it again I broke out in hives.

I am on Ofev could not tell you if its doing anything.

Good luck and please keep us in the loop as to how things are going. Any questions, I am sure there are a few of us who have dealt with it. Or if you just need to talk we are here to listen and offer support and when needed a few laughs.

Take care
Paula

[Charlene Marshall]

You’re the best, Paula! I am so glad you responded to Susan and shared a bit of your experience. I know it will be helpful to hear of someone else who’s had a similar experience, although I can’t say I know anyone else who ended up being within the 4% of people allergic to something 😉

Looking forward to hearing how things go for Susan, and so grateful that you took the time to write her.

Chat soon,
Charlene.

[susan-w-lyon]

Hi Paula and Charlene,

Thank you SO much for your really helpful relies! Sometimes when I have weird new symptoms, I feel like I’m losing my marbles, and finding others with similar reactions at least reassures me that it’s something real, even if not particularly desirable–one of the great benefits of a forum like this!

Sorry for such a slow response. Some family drama lately sucked up all my energy, which seems to fade pretty early  these days.

Starting Ofev today and hoping for the best.

Thanks again,

Susan

 

[Charlene Marshall]

Hi Susan,

Thanks so much for your reply, and I am so sorry for the delayed response on my end. I just wrapped up two major events this week, so I am really behind on replies but I am eager to get catch up with my “PF forums community” and see how everyone is doing.

I am so glad that the information Paula and I shared has been helpful for you. I couldn’t agree with you more – I wish none of us experienced these unpleasant symptoms but it is comforting to know that others have the same things as we do, and that we aren’t just losing our marbles, as you say (sometimes I feel like this too!).

Hope your family situation sorted itself out a bit – those things are completely exhausting, aren’t they? I’m happy to say that it is isn’t occurring in my family right now but it sure is in my workplace and I hate it. I got so mad last week, and it took up so much energy which I no longer have. The saga continues…

Wishing you nothing but the best.
Warm regards,
Charlene.