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    • #16559

      With the exception of using supplemental oxygen, idiopathic pulmonary fibrosis (IPF) is unfortunately a very invisible illness. This often leads to frustrating experiences for patients because it is hard to convey just how difficult it is to live with this illness, since many cannot see our daily struggle. In addition to finding it nearly impossible to breathe at times; IPF also brings with it many uncomfortable, annoying and exhausting symptoms as well. Some, but not all of those include:

      • Chronic fatigue: this isn’t the type of fatigue that is alleviated with a nap or good night’s sleep. This is a fatigue that makes functioning during the day nearly impossible, or the simplest of tasks like showering similar to running a marathon. Unfortunately, it doesn’t often get better and there really is not a lot that can be done to help IPF patients deal with chronic fatigue.

       

      • Aching Muscles & Joints: likely due to being under-oxygenated, oftentimes patients experience pain in their joints and muscles that is difficult to alleviate. This can prevent them from being able to participate in activities of daily living, such as working full-time or running errands independently.

       

      • A pesky cough: while this cough isn’t contagious, it doesn’t stop onlookers from judging us for being in public with such a “contagious” cough. I often spend time educating people on my cough, and that it is related to a lung disease that they cannot catch. Not only is this symptom of IPF socially exhausting to navigate, it can be physically exhausting and painful as well. My chest and back muscles often get sore during excessive coughing spells.

      These are just a few of the unpleasant, yet invisible side effects of living with IPF.

      Recently, I was speaking with another patient who has IPF and they were mentioning a lot of troubles with their sinuses. I’ve also had difficulty with this recently, especially the increased sensitivity that I am noticing within my sinuses but I did assume this was just connected to my cold. By the sounds of it, other patients experience increased sensitivity within their sinuses along with chronic congestion as well.

      Have you ever had trouble with your sinuses as a patient living with IPF/PF?

      If you have, do you have any remedies that help manage this invisible side effect? 

    • #16564
      Steve Dragoo
      Participant

      Serrapeptase will help the sinus issues too.  I was draining a lot and aside from that lung mucous – both are almost gone completely.  I do take a bunch of other supplements though and can’t say what impact they have in synergy. – Steve

      • #16683
        Rod Fulmer
        Participant

        Hello. I have struggled with sinusitis and congestion since I was diagnosed with IPF and severe emphysema. For three (3) years, any exertion would open up the drainage, making it impossible to breathe through my nose, and use of a cannula was severely interrupted. Every physician I came in contact with, every forum I joined, I could not find anyone that either would or could address the drainage that was triggered by exertion and shortness of breath. I recently changed Pulmonologist to one that actually shows some empathy about my overall condition. He prescribed Ipratropium Bromide Nasal Solution 0.06%, 2 sprays per nostril, 3 times a day. I usually take my first dose mid-morning, second dose late afternoon, and third dose before bed. I am proud to report that this has alleviated my drainage and congestion to a manageable level. Mornings, when I take the oxygen off, I have a significant amount of drainage, but once I take my first dose, I generally do not experience much drainage if any. By the second dose, I am drainage free, and the third seems to carry me through the night. Hopefully this will help you, I certainly feel for what you are going through.

        • #16707

          Hi Rod,

          Wow, thank you so much for sharing your story with me regarding the sinus and congestion relief. You must feel like a totally different person with having this a bit more under control? I am so glad you found a doctor that was empathetic to your needs overall and offered a solution that doesn’t sound too invasive to relief your sinus troubles. That is really refreshing to hear!

          Thanks again for sharing, I am going to keep this prescription in mind (I put it in my phone) to ask the doctor about if these sinus issues don’t go away with my cold. I wonder if this post-nasal drip/sinus/congestion-issues are related not only to IPF, but occur for patients with other lung diseases as well? I know sinus troubles are very common in CF patients too. Interesting…

          Take care,
          Charlene.

    • #16566
      Sylvain
      Participant

      Serrapeptase seems to help my sinus drain but constant mucus in my throat remains a daily annoyance.  What supplements you take to get some relief from it. Sylvain

      • #16578

        Hi @steve-dragoo and schsyl,

        Thank you both for contributing to this topic thread for me, I really appreciate hearing from you both! I am struggling more with sensitive sinuses’ than anything actually. Like it stings/burns a little bit when I  breathe in through my nose, but I suspect maybe that is just to do with my cold. Do you think Serrapeptase would help with this? I don’t tend to have a lot of dripping from my sinuses’ or excessive mucous but I suppose the combination of supplements to stop that might be a good idea ahead of it starting too.

        Thank you both for sharing this information with me and contributing to this topic thread.

        Cheers,
        Charlene.

    • #16568
      Steve Dragoo
      Participant

      Hi @schsyl Sylvain –  I take astragalus and serrapeptase. These two stopped chest mucous expect on occasion a slight amount. I have had IPF for 2 years and 4 months. What dosage and how you take serrapeptase matters.  Also, I try to get in some cardio but this disease wins that one too often.  Still this week the score is Gym 3; IPF 0.

      Regarding other supplements, it is difficult to say if they have an effect on mucous, but if they help the immune system usually that’s a good thing unless your lung problem is related to autoimmune, that I know nothing about. – Hope that helps you. – Steve

      • #16585
        Steve Dragoo
        Participant

        Hi Charlene – generally serrapeptase will help but I don’t know if your meds are contributing to your sinus issue.  Also, astragalus helps sinus too.  I have had post nasal drip for decades and started having a lot of mucous every morning from the IPF.  These two have really helped stop both and no noticeable cough increase.

        I am slowly increasing serrapeptase to avoid any detox efforts it might present as some have reported, because it may actually dissolve some of the scar tissue. So we have the potential trifecta: class IV laser, serrapeptase/astragalus, and Wei. It’s gonna be good… – Steve

        • #16608

          Hi Steve,

          Thanks so much for your reply regarding this. You know, I didn’t even think of my medications and that they might be contributing a bit to my sinus issues. That could very well be possible! I will be placing my Amazon order tomorrow, as I try to make a big order to have shipping worth it (even though I use Prime, some products aren’t eligible for free shipping) and have both Serrapeptase and the Amla in my cart to try. Figured it can’t hurt and I know you say it really helps, so I’m going to give it a shot. I’ll keep you posted 🙂

          Hey, guess what? I was able to use the hotel card which is very exciting. I applied it to my stay in Quebec City when I visit in April. I will be considering booking through that site when I visit Hawaii as well in the fall. Thanks again for sharing this resource with me.

          Enjoy your day – dare I say it: I think I just heard a bird chirp! I know it is way too early to have any signs of spring, but I’ll take it after the wicked winter weather we’ve had over the last few weeks.

          Charlene.

    • #16575
      Sylvain
      Participant

      Thanks, Steve. I’ll add astragalus to my daily serrapeptase. I take iSerra delayed realease 250,000 SPU 3 capsules daily.  Any suggestions for astragalus dose or manufacturer? As far as working out, I still work out daily by doing 2-3 miles hikes or treadmill if weather is really bad, lift weights and play some indoor tennis. I monitor my  O2 saturation and try to keep it above 90. I have an O2 concentrator that I didn’t use so far. I’m 72 and I retired a few months ago. Since all my  life I’ve addicted to sports, this disease is really hard for me to get used to but I’m not giving up. I intend to try the WEI institute protocol in the near future and hope that I will get a chance to try some new medications in the near future. Currently, I’m on Esbriet and 200 mg of Doxycycline daily (part of a research study). Good luck to you. Stay in touch. Sylvain

      • #16603

        Hi @schsyl,

        I am posting this reply on behalf of @steve-dragoo. He wrote this to me to pass onto you verbatim, as the forums are giving people a little bit of a tech-trouble right now. I am working on it though! Here is his reply:


        “Sylvain – I do not know possible interactions with what you are taking. So with astragalus, I went to the internet did searches looked at WebMd got on Amazon and read reviews and questions but I don’t have a recommendation on dosage for astragalus. I take between 10000 – 12000 mg daily.

        A brief description I found: “Astragalus is taken by mouth for seasonal allergies, heart failure, diabetes and to strengthen and regulate the immune system and many other conditions. Some people use astragalus as a general tonic, to protect the liver, and to fight bacteria and viruses”… Steve”

    • #16579
      Anne Roberts
      Participant

      I have had a chronic sinus problem for 50 years, so now I am on supplementary oxygen 24/7 for my version of pulmonary fibrosis (it is not IPF) my sinus’ are shot to bits! I know I shouldn’t but I have a quick squirt of a Sinex decongestant last thing at night so I can breath through my nose until morning. Nothing else gives me a respite from a blocked nose. Which is gonna give up first my nose or my lungs!

      • #16604
        Steve Dragoo
        Participant

        Thanks @Charlene-Marshall – I figured a way to trick the system and was able to get this to her early this A.M. – Peace Steve

        • #16606

          So glad @steve-dragoo, thank goodness for being able to trick technology, huh?

          I am just in the midst of uploading a big video I took for our tech team to see if there is any way to make replies a bit easier on the forums, for those who might be a little less tech-savvy. I don’t want anyone’s valued contributions to get lost. Hopefully we can come up with a solution. Glad you know you have a way around the errors though, that is great!

          Enjoy your day – the sun is finally shining here and it makes such a difference. Some of the ice is actually melting 🙂

          Cheers,
          Charlene.

      • #16685
        Steve Dragoo
        Participant

        @Charlene-Marshall,   Thanks, Charlene – I haven’t seen a post response from Sylvain so I hope she has seen it.

        Regarding the 2nd job, it starts in a few minutes and as an independent contractor, I can usually set my schedule. Hourly rate is good so it all helps.  Talk soon – Steve

    • #16582

      Hi Anne,

      Thanks so much for writing to us, and sharing your experience with this topic. So sorry to hear you’ve had such trouble with your sinuses. Was this from anything in particular? I can imagine it is a pain in the neck to be dealing with sinus troubles for so long. Is the Sinex a prescription? Glad this at least gives you a bit of a break! Take care and thanks again for sharing.

      Charlene.

    • #16607
      Sylvain
      Participant

      One of the concerns I have with the supplements mentioned is the risk of too much of a blood thinner, which can make one prone to hemorrhagic strokes even it protects you from heart attacks or ischemic strokes! It’s tricky to pick up your poison!

      • #16609

        Hi Sylvain,

        I think your concern is very valid, especially when the supplements are combined with other medications. Steve has done quite a bit of research about supplements for him, given his medication regimen, but always good to check with your Pharmacist or Doctor just to ensure the supplements won’t interact with your medications in any way. I know this would make me feel better too! 🙂

        Enjoy your Saturday!
        Charlene.

        • #16613
          Steve Dragoo
          Participant

          Hi Sylvain –  these don’t cause leakage like many meds might but if you have any blood thinners I would avoid the Amla however you are correct – check it out but don’t be surprised if the doctor says don’t, they have no idea about or training in homeopathic remedies most likely.

          It is to your benefit to be consistently researching about these supplements as I see relevant updated considerations frequently that are good to know and help quantify useful dosage better. – Steve

    • #16615
      Mary Osullivan
      Participant

      Is anyone having trouble posting on this site?

      • #16624

        Hi @gilberta719,

        I am getting your message, no problem 🙂
        Have you been able to post since making your ‘test’ message?

        Charlene.

    • #16619
      Sylvain
      Participant

      Unfortunately, regular doctors are not familiar with supplements and their interactions with other medications. Additionally, nobody checks the supplements’ sources and everything relared to their manufacturing chain and potential polutants associated with it! Tough choices!…

      • #16634
        Mary Osullivan
        Participant

        Sometimes it posts, sometimes it doesn’t.

    • #16620
      Steve Dragoo
      Participant

      You can typically check the sources within reason if you look.

    • #16617
      Mary Osullivan
      Participant

      Hi Charlene! I was very sick with sinus problems and infections over the last 6 months. I was on several antibiotics but it always came back. I started using the Nettie Pot daily and taking 1200 mg of Mucinex twice daily, and it is finally GONE! During these months I had a terrible cough…began coughing all day and night nonstop. Only cough drops would help. Dr. thought it was reflux. I didn’t think so because I was already on Protonix, twice daily. Went to gastro doc after doing a swallowing xray test. She changed my medication( this is much stronger!) and guess what? The cough is gone. I wasn’t experiencing any frequent burning. The doctor said you didn’t have to!!! I didn’t know that! Check on that. It’s a simple fix if that’s causing the cough. Do coughdrops help? My doc said if cough drops help then the problem probably isn’t coming from the lung. Anyway it’s worth a try.

      • #16664

        Hi Mary,

        Thanks so much for getting in touch with me and for sharing your experiences with sinus difficulties. While I’m glad I’m not the only one with this seemingly-related-to-IPF issue; I am sad that others have experienced this as well. Did the initial sinus troubles you were having Mary result from a viral/bacterial type infection? It sounds like it was the acid reflux for you, which would surprise me too since you didn’t have any burning. I don’t typically take any reflux medication, but maybe something I should have them investigate? Thankfully the cough is subsiding as I work through this cold, but the sinus pain does remain.

        I’ve heard lots of good things about the Netty Pot. Just this weekend actually my cousin was telling me about how much she benefits from it when she feels a cold coming on! One of the things I usually do is boil a bowl of water and put peppermint oil or something similar to that in, stirring until it is dissolved. Then I put a towel over my head and inhale the steam, usually helps but now I’m getting a bit anxious to do that if I can’t breathe well. Good information to know, thank you so much for your willingness to share 🙂

        Charlene.

    • #16650
      Mary Osullivan
      Participant

      Posting is still difficult.

      • #16665

        Hi @gilberta719,

        I am so sorry about this. It is breaking my heart that the forums are giving our valued members so much trouble – we’re trying really hard to troubleshoot the problem. I know members spend so much time writing to us, and I want to be in touch with everyone, so I can’t imagine the frustration that comes with posts disappearing. Would you do me a huge favour? While I try to troubleshoot what is going on with our tech team (I think the website just updated, and that is what is somehow causing the issues…), would you send me an email explaining the trouble you’re having with posting to the forums? Then I can forward your email on directly to see if there is a solution. My email is: [email protected]

        Thank you so much in advance. Anything helps to try and sort this out!
        Hugs,
        Charlene.

    • #16703

      Posting this verbatim, on behalf of @gilberta719 (Mary) 🙂

      There is a flapper test (swallowing) in which they can see what is happening when you swallow. I got the test because I was constantly coughing and choking and they couldn’t determine what the cause was .  My pulmonologist did not think it was due to my lung disease.  They determined it was due to reflux, the gastro doc changed my medication and the cough is 80 percent gone. I was also taking Prednisone at the time, so if the cough comes back then I guess the Prednisone took it away.  I’m just glad it is gone.


      During this time I was really sick. I slept about 12 hours a day and was still tired. I went to my doctor and she did blood work. I was borderline anemic, my iron was low, platelets were low, and my oxygen was in the low 80’s. I had noticed before my oxygen level was low 85-90, but we all assumed it was due to the terrible cold I had. I was put on oxygen right away..2 while sitting and 3 while walking. She sent me to be blood specialist who said I needed two infusions. She also gave me a B12 shot. I feel like I have gone from the walking dead to joining the living in the last 2-3 weeks. A few interesting things have happened. I now can sit with my oxygen on 1 and watch tv with levels of 93-96.  When it’s high I try sitting without it and I can maintain those level for hours. I can walk around the house on 1 and maintain 90. I gear it up if I am doing heavy duty cleaning.  I learned a great lesson here.  Don’t ignore your body when it is trying to tell you something.  Also, don’t ASSUME because you have a fatal disease that every problem is due to that disease!!!  Some things can improve! Don’t settle for one doc, one opinion!!! Keep searching if you are not feeling better.  I feel SOOOO much better!! Will it last?  Who knows? But I will keep asking questions!  Oh, and I am still keeping my appt. with Duke on April 9th!  Hope this helps someone!

      Also…if you are diabetic ( as I am) know that the Metformin will suck all the B12 out of your system. Low in B12 cuses anemia….anemia causes hair loss ( I lost TONS of hair!) I didn’t know these things.  Don’t count on your doctor to know everything.  Do your research.

    • #16705

      Hi Mary,

      I am really glad the cough is gone for you as well, that sounds terrible! You know, I’ve heard so many people who have had to deal with GERD/acid reflux and IPF – there seems to be a stronger correlation between the two than I ever thought possible. So far, I don’t believe I have an issue with this (unless it is causing the sensitive sinuses, but I don’t think so) but will keep this in mind as my disease progresses. Had you been dealing with reflux ever before?

      I am so glad to hear of your progression over the past few weeks too! I am on an iron supplement, prescription Vitamin D (also something we patients tend to have in common) and get B12 shots as well. I really think they help! Good for you keeping your appointment at Duke, and I really appreciate you sharing your story/experience as it is a good reminder about the importance of trusting our bodies and getting more than one opinion. Is Duke assessing you for transplant eligibility?

      Take care
      Charlene.

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