October 8, 2018 at 6:53 am #14770
Thankfully, I’ve never been one to suffer much from seasonal or environmental allergies. As a result of this, I am not accustomed to dealing with nasal congestion and when I do experience it my tolerance for it is very low. This is something I’ve increasingly noticed over the past few months, and some other patients who are also dealing with idiopathic pulmonary fibrosis (IPF), have said the same thing.
Do you suffer from frequent/regular nasal congestion since your diagnosis?
If so, have you asked your doctor about this and do they have any insight they were able to share with you? I know some lung conditions, like Cystic Fibrosis, can cause sinus troubles leaving patients feeling congested on a regular basis. However, I didn’t think this was a symptom of IPF.
This seems to be another unusual and unpleasant symptom that patients living with IPF/PF have to endure. I’m curious to hear if this is something you’re familiar with, or perhaps I do have an allergy that I should look into that is causing this congestion. It is especially bad in the morning!
Thanks in advance for any information you might be able to share.
October 9, 2018 at 8:28 am #14787Michelle Lantis-HarmsParticipant
My doctor told me to use zertec and flonase to help keep my nasal passages open but I have still occasional problems.
October 9, 2018 at 8:59 am #14789
Thanks so much for getting back to me on what is recommended from your doctor to help with this. Are both of those prescription medications, or are they available over the counter? I’ll have to talk to my doctor about this to see if he recommends something similar. I know you said you still have occasional problems, but do you find it is kind of effective for you?
September 9, 2021 at 5:56 pm #29901
Both Zertec and Flonase are OTC. Zertec is a pill. Flonase is a spray. Flonase is also prescribed. I found (two-three years ago) that I could pay less for the prescribed Flonase than buying it OTC.
September 7, 2021 at 4:10 pm #29857Mike MonsonParticipant
I’m new to this congestion every morning as well. I just thought that I had a slight head cold. My congestion usually starts in the evening and gets worse by morning. I’m on 2 litters of oxygen at night. I have IPF and I am on OFEV.
Thank you for your post!
September 7, 2021 at 7:01 pm #29861Jim DeWolfeParticipant
This is my one year anniversary from having been diagnosed with “The Monster”.
I have had continual problems day and night with the runny nose and nasal congestion as well as sneezing spells 2 or 3 times each day that last for from 5 to 10 sneezes each session.
I have tried numerous medications but none have brought me relief.
My best to you,
It just adds another dimension to this new life we live in.
I care very much for each and everyone of you with PF/IPF and know how hard it is, at times, to get back up and fight and that is what makes us such a strong and loving brother-sisterhood.
October 9, 2018 at 8:43 am #14788Brian SowterParticipant
I think we have discussed this before but others may be interested. I used to suffer from nasal congestion and other GERD symptoms and for years I was told it was post nasal drip. A couple of years ago I was told that the nasal congestion was caused by reflux. Further I was told that the reflux caused my IPF. Now I treat the reflux with antacids, a sleeping wedge, loose clothing (I now keep my trousers up with old fashioned braces) and careful eating and drinking habits. I can say that the nasal congestion has stopped and the IPF has not progressed measurably in the last 2 years. The simple way to see if reflux is causing problems is to take a good dose of Lansoprazole or similar for a couple of weeks. I felt relief in 3 days.
October 9, 2018 at 9:02 am #14790
Thanks so much for your reply, and for reminding me of our previous discussion regarding this. I think you’re right, as I vaguely remember talking about reflux and all of the issues it can cause, unknowingly to physicians oftentimes. That is really good to remember and admittedly, I’d forgotten about the importance of treating the reflux. I’m going to give this a try to see if I notice a difference, I don’t imagine it could hurt me to at least try it out. Glad you’ve found some relief through relatively “minor” adjustments to your daily habits… a few good things I can try too!
Thanks again for writing Brian. I hope you’re doing well!
September 7, 2021 at 9:53 am #29851AmberParticipant
Hi Brian..thank you for sharing this..
I believe i have the same that my IPF is causedby acid reflux..i have told my dokter about it..but he kerps telling me its not possible..but i didmy own research and thinking..and observe very carefully whats going on with my body,breathing..and i still believe its the case..i also have IBS what is aswell contributing..i have treathment for that now..and lungs are much better….but only 3 months now..i have been saying for a long time what i was thinking..but dokter did not agree..i am happy that i took the step to give it a try..aswell i am on pretnison high dose what makes agsin stumach upset and acid a lot..what in return drips in the lungs..and the cycle never ends..i am now on less pretnison and pantaloc ..and do much better..I hope aswell that IPF is becoming stabiel..thank you for sharing
September 10, 2021 at 9:23 am #29902
When I was first seen by a Kaiser pulmonologist who interned at National Jewish and specializes in IPF he stated that there is for sure a link between GERD and IPF in many patients. He stated while GERD can’t be considered THE cause, it is clearly one of several factors for many patients.
I have been treating GERD for several decades while my IPF has remained quite subdued since 2007. I continue to treat my GERD with an elevated bed, one of the …..prazole drugs, and for the last year and half have been taking 300 units daily of Teavigo green tea extracts. I was unsuccessful taking Esbriet® (perfenidone) and Ofev®(nintedanib) due to side effects. I’m doing well with no discernible progress of my disease since 2017.
September 12, 2021 at 5:24 am #29917
Thanks for sharing the information from your pulmonologist regarding GERD and IPF. I suspected a link, as so many of us experience acid reflux symptoms when also dealing with this cruel lung disease. Glad to hear with the management of GERD your IPF has remained stable, that is excellent to hear. Thanks so much for writing us!
September 6, 2021 at 8:29 pm #29850Stanley scohenParticipant
I am using Allegra or nasal decongestant pe or Flonase. When being fitted for hearing aids I was told that I have mild sinus condition. I have stopped using Ofev (upon MD’s approval due to weight loss) but I do seem to suffer from sinus issues. The scan shows IPF stable but I was wondering if over use of the decongestants could have a adverse affect on the IPF. THANKS.
September 9, 2021 at 5:52 am #29884Jo-Ann BloomfieldParticipant
Hi Stanley, I’m interested in hearing why you stopped taking Ofev, I’m really struggling to keep weight on I’m 58 years old and my weight is down to 38 kilos, I’m feeling I’m not going to die from my PF I feel it’s going to be from weight loss, my doctor has never suggested this. My PF was caused from reflux, I had had weight gastric bypass twice as well as hiatus hernia fixed, not once did my doctor say I could slowly be killing myself, so I found out in October last year that I had PF and I was server so I’m at the end stage now very severe, and unfortunately I can’t have a lung transplant because my stomach couldn’t take the anti rejection drugs that are needed to take for the rest of my life. With you stopping the Ofev did you feel like was a bit harder to breath? I’m on oxygen 24/7 or did you find it easier, kind regards Jo-Ann Australia
September 7, 2021 at 10:20 am #29853Ian YoungParticipant
Hello to all,
Although I’ve been reading some of the posts on this forum for several years, this is the first time I’ve contributed. I suffer from intermittent nasal congestion, mostly caused by a mix of mucus and congealed blood. My doctor here in France prescribes a nasal spray called Rhinocort, whose active substance is budésonide. I only use it when needed, and find that it is generally very effective.
September 7, 2021 at 2:57 pm #29855Karen MartinParticipant
I also use Zyrtec and Flonased (generic forms for both) for the drippy nose. (They are both OTC meds, Char.) The thing with Flonase is that you need to take it every day as it works best on a cumulative basis. Once I got that part figured out, it works much better. I still have some dripping, but it is much more manageable. The Flonase is also in regular spray as well as a fine mist that my daughter prefers. Best of luck with this issue.
September 8, 2021 at 2:14 am #29866Jeff Taylor-JacksonParticipant
I was diagnosed with IPF April 2021. So this is still new to me.
Like has been mentioned above, There is a possible link to Acid Reflux being the trigger for the ILD/IPF.
My consulant has noticed from my CT scan that I have an Hiatial Hernia, these are known to cause acid reflux.
On the nasal congestion, I now have this every morning. I also have bouts of sneezing for no reason. I have never suffered from hay fever, so I’m sure it’s not that.
So there could be someting in the acid reflux and nasal congestion.
I have a meeting with my consultant in a few weeks, I will ask her about it and feedback what her views are.
Jeff in England.
September 9, 2021 at 10:10 pm #29903Cheryl thomasParticipant
I don’t have nasal congestion but I do have to clear my throat lots if times during the day. Very annoying. Often get mucous from the back of my throat. I too have had reflux since the age of 29 and also IBS, I definitely have read there is a link to it causing IPF. Does anyone else have the throat problem?
September 10, 2021 at 3:49 am #29906
According to my speech therapist you should definitely clear your throat when needed. Be thankful you are feeling the triggers to clear.
I am currentlly receiving therapy by the therapist to address a problem with recurring pneumonia.
I do not swallow properly which results in food getting into my windpipe. I also have the problem of post nasal drip getting into my windpipe.
I lost the sensation in my throat to cause me to cough or clear my throat, I am being trained to avoid getting food in the windpipe and to purposely cough and clear my throat after eating or drinking. I can usually detect anything I cough up.
One of the most effective techniques they taught to assure food does not go into the windpipe is to chew food well and before swallowing take a breath and hold it momentarily then swallow. There is a little flap at the top of the throat that normally closes the path into the windpipe and diverts food down the esophagus to the stomach. This flap weakens in some people. By holding your breath the throat muscles force that flap to close. This technique has worked very well for me.
Anything that helps prevent pneumonia exacerbating my IPF is always welcome.
In regards to sneezing: I too experience sneezing attacks ocassionally. They are uncontrollable and I may sneeze ten to thirty times in rapid sucession. They have no apparent cause as I can be sitting quietly or reading when they occur. I have a large commercial size HEPA filtered air cleaner in my room. I
On some occasions I have noticed tiny specks of blood on the tissues. I suspect the sneezing is a reaction to my blood leaking from nasal lining. Of course it could be the opposite… the sneezing may have caused the bleeding. I am on blood thinners.
It’s interesting that others with IPF experience sneeze attacks but I doubt there is a link.
September 10, 2021 at 11:38 am #29914Linda MaguireParticipant
I used to clear my throat frequently, but after being diagnosed with “silent” reflux (no heartburn) and taking Prilosec to treat it, the throat clearing went away. Apparently it is often a symptom of GERD. My pulmonologist believes the previously undiagnosed GERD is what caused my IPF, & I have been stable since my diagnosis in 2016 and continue to treat the GERD only (no anti-fibrotic meds).
September 10, 2021 at 1:36 am #29904Jeff Taylor-JacksonParticipant
Yes I have the “clear my throat” problem. It is annoying and is commented on by my co-workers.
Obviously no idea why this was happening in the past. I do have the clues now though!
Jeff in England.
September 10, 2021 at 2:49 am #29905Cheryl thomasParticipant
Thanks for responding. I have never asked my pulmonologist, but I do notice it with two other members of my support group. It really is bothersome.
Cheryl in Pittsburgh, Pa.
September 10, 2021 at 5:10 pm #29916Karen MartinParticipant
Linda, after reading your post about the silent GERD, it makes me wonder if some of us who are taking anti-fibrotic meds might be in the same boat. It would certainly be less expensive to treat things this way. Sounds like something worth exploring with my pulmonologist.
September 20, 2021 at 12:25 pm #29995Denis RyanParticipant
I recently attended a Zoom conference on Lung Fibrosis here in Ireland. On session was given by a consultant from the University of Essex in the U.K. I asked her “Can Reflux/GERD be a cause of IPF”. She responded –
“This has been the cause of much discussion – it is generally thought that GERD exacerbates rather than causes IPF but there are a few cases where the fibrosis is unilateral (affecting one lung) in individuals with severe untreated GERD where the GERD is thought to be a probable cause”. It seems to me that there is still confusion about the question and more research needs to be undertaken on this issue! It would be interesting to hear what your own consultants think about it. Denis Ryan
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