Regina Bolyard
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I stopped taking Ofev because I developed significantly high blood pressure while on it. BP returned to baseline after discontinuing it.
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Hi Amy,
My cough also started out dry….about 20 years ago. I was diagnosed with IPF after VATS and MDD about two years ago. I have traction bronchiectasis too, and my cough has gotten more productive as time passes. I have found that staying very well hydrated keeps sticky plugs from developing. Maybe drinking more water and avoiding things with a diuretic effect could help your mother. Unfortunately, some of the medications IPF patients take tend to cause dryness. Extra fluids compensate for that, in my experience.
I’m also interested to know if telomere length correlates with IPF. I haven’t heard anything to confirm or refute that. Hopefully someone else will have heard or read something. Much more research needs to be done.
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I feel for you, and I’m sorry for your loss.
Regina
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Why not get a second opinion? It may be that you don’t present with all the classic features of IPF. Have you asked your doctor exactly why they want surgical biopsy? I will share my experience as an example:
Honeycombing was not visible on my HRCT and I had an atypical amount of upper lung involvement. I also had a history of environmental exposures that are connected to HP. So I decided to go through VATS biopsy. That made it possible to rule out many pathologies. The amount of tissue collected via bronchoscopy or needle biopsy is usually pretty small. That limits the number of tests that can be done. Both the aforementioned methods of biopsy come with risks too. I didn’t want to go through either and have to ultimately have surgical biopsy anyway.
Best wishes,
Regina
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Are any of you aware that 23 & Me is doing genetic research into IPF? As of 2 months ago they were hoping to recruit another 1000 volunteers. The testing is free if you qualify as a participant.
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Hi Pete,
The nurse from Genentech told me that it is unnecessary to spread doses out evenly. She told me that I only need to keep them at least 4 hours apart and take with food.
I hope this helps.
Regina
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This is a really great question. I will be starting back on Esbriet tomorrow after being off treatment for several weeks. We were trying to determine if I was having side effects due to Esbriet or another new medication. When I discontinued Esbriet most of my issues resolved.
I learned from genetic testing that I have a CYP genetic variant that makes me clear drugs less efficiently. So I will resume at only one 267 mg. dose a day and titrate very, very slowly. I may not ever be able to tolerate the full dose. My doctor seems to think that some is better than none. I will ask if there is a threshold of dosage below which she thinks it is pointless. I wouldn’t have thought to ask if not for this discussion.
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I have stopped taking Esbriet. I was having some really unusual side effects. I started taking prednisone right around the same time I started Esbriet though, so some of the problems may be the prednisone or the combination of the two. I want to give it another go and see if there’s a repeat of the issues. I never did reach full dose. I got as far as 2 pills 3x daily but had the dose reduced again soon after.
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@davidaswain
While on Esbriet I experienced tingling and throbbing in my fingers and toes and to a lesser extent, my feet. I’ve been on a temporary break from Esbriet (doctor’s decision) for about a week while we figure out what medication is causing other issues. Since about 48 hours off Esbriet the sensations I described stopped. They were never uncomfortable enough for me to want to stop treatment, but it does concern me that this is an undocumented side effect.
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Mark,
I’m glad to know that you and your wife are doing well after having COVID. Since starting on prednisone I have been more anxious about being inadvertently infected with the virus. I acknowledge the need for continued vigilance but it is good to know that a body on immunosuppressants can still mount an effective defense.
Thanks for sharing your experience.
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I experienced nausea the first few days on Esbriet. I now continue to experience mild stomachache after each dose. I’m still not on the full dosage because of other, atypical side effects. I have also experienced a new level of fatigue since starting it that has not abated. I have only been taking it for 7 weeks.
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I have IPF. I was fairly stable until 7 weeks ago when there was a fire in my building. I have been on prednisone 3 times since then. Smoke inhalation caused my cough to become very bad. We have tried various doses and titration to wean me off, but so far the coughing comes back as soon as the dose is decreased. I’m hoping this 3rd time is a charm because the side effects are unpleasant.
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My heart goes out to you. Loosing your mother is never easy. I hope you find comfort and peace knowing that her suffering is over.
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@suzrbrennan,
Thanks for sharing your morning routine; I have hip issues and these sound like they might really help!
Regina
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I’m curious to know how long it took to develop food aversions after beginning Ofev. So far tiredness is the only side effect that is impacting my daily routine. I still want to eat everything I had been before beginning treatment. I really have to restrain myself from over eating while I’m not feeling like moving. I put my stationary bike where it is always in my sight to nudge myself to exercise. I think I need to tape a snarky sign on it that will motivate me more.
I am only taking 100 mg b.i.d. of Ofev at this time. I expect my dose to be increased if liver enzymes appear normal at testing. I just started taking it on August 31st, so it’s early days for me. I wonder if a dosage increase will have more of an impact, as side effects go.
Thank you all for sharing your experiences and your humor… I really do appreciate it!
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Beginning a low carbohydrate diet like the one you described will usually result in the loss of body fluid. This often results in loss of electrolytes as well. This happened to me when I first adopted a low carb lifestyle. I now supplement with unrefined salt, magnesium, and potassium. I havent had a problem in years since supplementing with these minerals.
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@pbesio ,
My biopsy was pretty uneventful too. The chest tube grossed out my kids, and I had fun with that ?. But honestly, didn’t even feel it. Pain afterward was far less than I had been led to expect. I had surgery at noon on Wednesday and was discharged at 10 a.m. on Friday. The worst part of the experience was the hospital bed. I couldn’t wait to go home.
I had put mine off for about 5 months, but it was to get a referral to a PF specialty clinic listed in the PFF Care Centers. I have no regrets.
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@jross ,
In March the FDA approved Ofev to treat patients with chronic, progressive fibrosing interstitial lung diseases. These include Hypersensitivity Pneumonitis, Autoimmune ILDs, and NSIP.
It may be too soon to know whether it will help in these diseases, but I would sure be willing to give it a try. I had a surgical biopsy last Wednesday and am waiting for a refined diagnosis. So far all I know is that there is a definite UIP pattern and no infectious cause. From what I‘ve read, the differential diagnosis for UIP is limited to 6 diseases. That is not including IPF, which means that the cause is unknown. In my case it is likely narrowed down to 3 of the 6 possibilities or IPF if none of these fit. I will hopefully know more in a few days after the MDT meets again.
I looked at the University of Florida page you referred to which tells that only about 20% of referred patients actually get a final diagnosis of IPF. My thinking is that a lot of people are being diagnosed without biopsy before they are seen in Gainesville. My HRCT report read “probable UIP”. That is now confirmed with biopsy. I don’t think my doctors would proceed with antifibrotic treatment without a biopsy, but it sounds like quite a few will. If I prove to have an autoimmune trigger or HP, they may use another therapy and include an antifibrotic. But to miss out on knowing if something besides antifibrotic therapy could help would have been a shame.
I strongly advocate getting the most definitive diagnosis possible.
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@vmcurrie62
Hi Virginia,
I’m so sorry for you not having support at work. In addition to having your livelihood threatened, it must feel like you are being devalued. I want you to know how much I appreciate nurses. You are the backbone of patient care and the comforting attention you give is critical to our well being and recovery.
Like Bengt, I also wondered if you have had, or are going to have a biopsy. I explored every possible option to surgery but it was the only way to go for me. My biopsy was to (hopefully) differentiate between IPF and Hypersensitivity Pneumonitis. From what I’ve read, those two causes of PF can have very different prognoses and require different therapeutic approaches. I hope you are able to get to the root of yours and that you can keep doing your job.
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I think that a second opinion might give you peace of mind, if nothing else. Knowing that you have explored all options might also give you added sense of control of your disease.
I am often surprised at the diagnoses made without a biopsy. I am assuming that your radiological pattern was so obvious that it shows unmistakable UIP pattern. Also that you have been tested for all the possible autoimmune diseases which can cause PF.
I write this as I am recovering from yesterday’s wedge excision from all three lobes of my right lung. The pathologist(s) will be looking at the microscopic pattern and will also look for possible fungal, bacterial, viral, and environmental triggers. Hopefully this will refine the PF diagnosis for me. I feel better knowing that my doctor is being thorough. I wanted to be as certain as possible of a correct diagnosis. If that is what you want, pursue it if it within your power.
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I have the same problem sometimes. I tried to post on the thread about the time lag in getting diagnosed several times with no success. But I posted in a different thread using the same device. I just had to wait for a moderator to approve.
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Mark and Charlene,
This topic bought to mind something I read a little while back.
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I had a telemedicine appointment with my primary care doctor recently. I’m no stranger to video conferencing, but I wasn’t entirely comfortable about using it to replace an office visit. However, it was preferable to making a non essential trip and I just needed med refills.
I lost my doctors visual feed a minute into the appointment, so there’s that, but the appointment went ok. Any vitals that would be done in-office for the record, I was able to provide using my personal equipment. The only thing I really disliked about the experience was having to use my phone. That is the only way my doctor can secure the visit in compliance with HIPPA. I would have preferred using my tablet or computer.
I have declined other video appointments. I was to see a rheumatologist as a new patient but I didn’t think that it was appropriate under the circumstances. I also declined one with my local pulmonologist. My surgical biopsy is put on hold for the foreseeable future, so there was nothing new to discuss. I didn’t see the point. At a later date I may do the telemedicine visit with my pulmonologist, but not just yet. My lung function is still pretty good. If it were not, that would influence my decision.
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Both of my lungs are scarred about equally. My cough is more productive early in the day. By late afternoon I usually have a dry barking cough with little to no mucus. I also experience stabbing pains. Having bronchiectasis (which I do), causes more mucus production. I also have asthmatic symptoms along with the IPF. My airways become inflamed when triggered by irritants. I don’t know if this contributes to mucus production though. And I don’t know how this compares with those who have only a dry cough.
I feel for you.