March 18, 2020 at 3:58 am #23518
I have been reading that COVID-19 becomes deadly when it induces a cytokine storm in the lungs. I have hypersensitivity pneumonitis so I already have an overactive immune system. I have been trying to find information on whether these cytokine storms are more likely to occur in people with my illness, but I haven’t been successful so far. I am going to ask my consultant but my next appointment is not until May. I’m speaking to my GP today but I’m not sure if they will know anything about it.
Does anyone here have any knowledge or understanding of these issues?
Thanks in advance!
March 18, 2020 at 5:26 am #23521Mark KoziolParticipant
Hello Wendy, hope you are doing well. I found a research article backing up your fears. You probably shouldn’t worry yourself at this time because this storm would only take place if you contracted the covid-19. My diagnosing physician has always told me to stay away from Dr. Google. I’m sure if you were infected with covid-19 your medical team would be aware of your underlying conditions. I would still notify your Gp. There is no harm in this. I do thank you for bringing this cytokine storm process to our attention. Again, please try not to worry yourself, it’s not good for your body. Take care, rest and breath easy. Mark
March 20, 2020 at 10:23 am #23565
Thanks, Mark! I am less worried now as we enter day 5 of self isolation and neither my husband and I have any symptoms. Now it’s all about hunkering down and dealing with life at home only for a minimum of 3 months, according to our PM, who frankly, is not the most reliable source in my opinion. I’ve been super busy organising grocery deliveries, pharmacy deliveries, and now flea treatment for my cat. We have to order groceries 3 weeks in advance online because all other slots are taken. Fortunately, I’ve checked online every day and stayed ahead of the game so we should be fine. And my husband has taken up baking bread! Somehow we will get through this.
March 20, 2020 at 11:21 am #23568Mark KoziolParticipant
Hello Wendy, I love your plan you have in place, especially the homemade bread. Stay well and breath easy while you are going through this adversity. Mark
May 13, 2020 at 12:30 pm #24330
for quite some time now I have considered there may be possible “windfall benefits” for IPF patients, coming from the COVID19 storm. In other words I was hoping for a silver lining in this bleak atmosphere, stemming from the efforts of combined internationally focused research, looking for cures and therapies for coronavirus victims, especially regarding lung damage, as it bears similarities with IPF.
Eventually, I came across this article in the “Jerusalem Post” that touches upon Wendy’s (and our) concerns:
“Can this Israeli corovavirus drug ‘completely prevent’ lung damage?… Bonus BioGroup has completed a preliminary study of a new drug to treat acute and life-threatening respiratory distress in COVID-19 patient”
It seems, my hunch was not …unfounded!
May 13, 2020 at 9:31 pm #24345Charlene MarshallKeymaster
Hmmm…. really interesting article title @mikepapa ! I look forward to reading through this a little more thoroughly tomorrow. Like you, I’ve also been hopeful for some silver lining to emerge from all the research being conducted on COVID, that will ultimately help those of us with IPF or other ILDs. I’m still hopeful — it seems impossible that some sort of new learning will come out of it. The only thing I’m cautious on is that the type of lung damage/scarring caused by COVID seems different than that scarring of an interstitial lung disease (ILD) like IPF. I read that an article tonight, which can be found HERE and was originally published from the Pulmonary Fibrosis Foundation.
What do you think? I still think it is favourable for us that some research will emerge, I just hope it includes information and treatment on fibrosis for ILDs along with COVID. Curious to hear your thoughts.
May 14, 2020 at 6:26 am #24347
I do agree with you this is an opporunity for ILD patients to profit from COVID19 “collateral benefits”, provided that one can keep evading the actual bug for as long as needed, but like you I am just an average layperson when it comes to technical jargon and delving into medical minutiae, so one can only hope that some benefit for all of us will accrue in the end. One interesting view I read on the subject is that people on immunosupressants (like e.g. Pirfenidone) should be able to weather more lightly the after-effects and inflamatory action of the COVID virus on the lungs. Another silver lining perhaps or a mixed blessing?
May 14, 2020 at 10:47 am #24350
Hi, Michael – Thank you so much for posting this. It sounds really intriguing! I’m also interested in what you say about immunosuppressants. I’ve been very nervous about starting them with this virus raging. I’m considered “extremely vulnerable” here in the UK, which means I am “shielding” at home until the end of June. I’m feeling a bit depressed today because this week has been difficult, a sort of mini-flare up, so to speak, with a lot of coughing and extreme fatigue. My oxygen sats are down too. My last CT scan and lung function tests were cancelled; they were to determine whether it was time to start on immunosuppressants. I’ve been very reluctant to start with a pandemic raging around me. I doubt my appointment will be rescheduled before July but maybe I shouldn’t be so frightened of starting them if they will slow the progression of my illness, which I feel is progressing while I’m in lockdown.
May 14, 2020 at 8:09 pm #24359Charlene MarshallKeymaster
Thanks for writing back! I have also heard this, and am trying to find credible sources on it to affirm whether or not it is true. Unfortunately a lot of information is swirling the internet right now, including on various Facebook platforms without reliable sourcing. Of course our own experiences, are very telling too and I can assure you I’ll be writing an interesting piece next Thursday that might be comforting to you, and @wendy-dirks as well. I’m curious to learn more about the immunosuppressant use as well, hope to share some insight with you all soon. Thanks again for writing and let’s keep this very interesting dialogue going…. and remain hopeful too! That is very important 🙂
May 15, 2020 at 8:44 am #24367
Regarding @wendy-dirks immunosupressant use, it might be prudent to follow the MDs recommenndations IMHO. I have been on Pirfenidone (Esbriet) which is also an immunosupressant, for about a year after having fought with a few side effects (tiredness, headaches and upset stomach, being the most annoying) and managed to live with them. I also take a variety of supplements as directed by my homeopath MD. My January CT and lung tests showed no marked deterioration and my next assessment will be in June.
@charlene-marshall , I’m looking forward to your new article.
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