Jofac O'Handlin posted an update 1 month, 3 weeks ago
@steve-dragoo Hi Steve, just posted on the Aspirin Thread, forgot to ask, have you attributed any change / improvement to starting aspirin?
I note that you menioned metformin,. There was a study done on those taking prescribed metformin related to IPF frequency which did not show a statistical benefit. I tried to get it but very difficult in the…[Read more]
Charlene Marshall replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 5 months, 3 weeks ago
Hi @steve-dragoo ,
Not a problem at all, we just wanted to post that reminder to ensure emails aren’t being left publicly, most importantly to protect our members’ privacy. In a PM/DM is totally fine!
Hope you’re doing as well as possible! think of you often.
Christie Patient replied to the topic Toolkit for the Newly Diagnosed in the forum Diagnosis Information and General Questions 9 months, 3 weeks ago
Thank you for sharing @steve-dragoo and @pbugz12 !! I love to see common themes appear, as well as unique perspectives on coping. Hoping we got some more responses to help others who are just starting their PF journey. I appreciate you starting us out.
Patrick Coghlan replied to the topic Coping in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago
@steve-dragoo Yes, I’m thinking it may be time to refrain from processed meats, bacon anyway.
Charlene Marshall replied to the topic Shameless Plug: New IPF/ILD Book! in the forum Pulmonary Fibrosis Awareness & Advocacy 1 year, 4 months ago
You are too kind my friend, @steve-dragoo! Thanks for your kind words, I’m excited for others to read this. It really was a labor of love from those of us living with this cruel disease to our fellow patients.
juhi posted an update 1 year, 8 months ago
@steve-dragoo Hello Steve, I have been following this group from few months now and I cannot thank you all enough for all the useful information that I have found here. My Father was diagnosed with IPF in 2018 and has been on Fibrodone since then. He has been doing quite well with a stable PFT all these years but I do see a recent decline in his…[Read more]
Hi Juli – NAC, serrapeptase, nattokinase – all need a word of caution. I’m not sure where you are located but the FDA in the US had many companies like Amazon pull NAC because people were using it to fight covid. But it does help a lot with IPF.
With serra – it is measured in serrapeptase units (SU) and must never be taken anywhere close…[Read more]
Charlene Marshall replied to the topic Herbal Remedies & IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
Thanks for joining the PF forums and sharing a bit of your story with us. I haven’t personally been on the NAC supplement for my IPF, but I do know others who have. Thanks @steve-dragoo for commenting and I’d love to hear from others who have personal experience with this. The weight loss, albeit not easy with IPF due the…[Read more]
Charlene Marshall replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 1 year, 11 months ago
As always, so nice to hear from you and hope you’re doing well!
I had bought a salt inhaler a few years back, and actually just re-came across it last weekend; funny timing on this post. I didn’t notice a significant difference when using it back then, but I was hardly symptomatic as I was newly diagnosed. Since I don’t think it…[Read more]
Christie Patient replied to the topic Wins 6/16/21 in the forum Wednesday Wins 1 year, 11 months ago
Wow @steve-dragoo that is A LOT of cookies!!!! Send some to me! Haha. Good for you for accomplishing such a tall order in one day!
Charlene Marshall replied to the topic Fevers & IPF Patients: Let's Talk About Em' in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 12 months ago
So nice to hear from you, as always friend and thanks for your kind words. Thankfully, the temperature spikes have settled down a bit and last bloodwork I did, my WBC was pretty good; not indicative of an infection anyways. Could be lasting side effect of COVID, everyone seems to be different in terms of side effects that don’t…[Read more]
Charlene Marshall replied to the topic Inhaled Therapies for IPF in the forum Diagnosis Information and General Questions 2 years ago
Thanks so much @steve-dragoo – always nice to hear from you and how you are doing! Thankfully a productive or mucous cough isn’t my issue, but rather the dry, barking cough that everyone fears right now because of COVID. My lungs seemed a lot better before I started taking these new inhalers – Spiriva Respimat and Zenhale – but have been trouble…[Read more]
Charlene Marshall replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 4 months ago
I don’t personally have any experience with Wei, but I do know some members have tried it can likely share what their experience was like with the herbs. @steve-dragoo and @denny-eliassen do you mind sharing?
Charlene Marshall replied to the topic Digital Clubbing in Pulmonary Fibrosis Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 5 months ago
You too, @steve-dragoo … stay well! I’m so glad you’re on the mend a little more than the last time we connected.
Take good care my friend,
Charlene Marshall replied to the topic Anti-Inflammatory Medications and Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 2 years, 5 months ago
So nice to hear from you my friend, @steve-dragoo!
How have you been doing?
Thanks so much for sharing your thoughts on this. It sounds like a lot of patients with IPF, including those on anti-fibrotics, have been told not to take NSAIDs or avoid them as much as possible. I’m going to connect with my doctor about this and ask for clarification.…[Read more]
Charlene Marshall replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 2 years, 6 months ago
So nice to hear from you my friend, though I’m so sorry to hear you’ve been sick! Feel free to only share what you’re comfortable with, but did something trigger you to get sick, like a virus or other type of infection? I think I remember you were doing quite well, aside from the SOB and fatigue. Sad to hear you’ve been so sick,…[Read more]
JR German posted an update 2 years, 10 months ago
@steve-dragoo Sorry to have taken so long to respond. I couldn’t figure out how to not carry on a chat inside a Forum topic. Hope this is the way!
My field of expertise was neurodiagnostics and polysomnogray. It served me well and I am now retired. I, too, carry your sentiment regarding Covid-19 and am taking precautions to limit my exposure…[Read more]
Hey JR – no worries That’s an awesome career. I should have stayed in medicine after the USN as I would have become a PA. Have 2 family members as doctors and a few RN’s too.
There is a lot of confusion about the ccp virus and the USA media has continuously stirred the pot in all directions – so has some of the medical profession. I…[Read more]
Kristina grilo posted an update 2 years, 10 months ago
@steve-dragoo Hi Steve…..I was reading your reply to someone, not sure who now, but you said that you don’t have a need for oxygen while you’re in the Philippines, and that the meds were quite different there…. may I ask what you are taking over there? I continue with the laser and some over the counter supplements, but have to have oxygen…[Read more]
@kristina Hi Kristina – I do need O2 over here once in a while but it is hard to find as are most quality meds – is what I meant. But my O2 need is rare and short term (seconds) so far. I am 71 and diabetic and have PAH but this morning I took my pulse with my O2 meter and my heart was 55 BPM and saturation was 97. A year ago saturation was 98…[Read more]
Charlene Marshall replied to the topic Control Group for EGCG + IPF Longitudinal Questionnaire in the forum Research and Development 2 years, 10 months ago
No problem @steve-dragoo , thanks for letting my know my friend!
Charlene Marshall replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 years, 2 months ago
Hi @steve-dragoo, so nice to hear from you my friend! I think the post was flagged as spam for some reason, so I just released your reply to Jaime. I have no doubts it will be informative! I know I owe you an email, it is coming… promise! Hugs, Char.
Charlene Marshall replied to the topic Nattokinase – What dose? in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 4 months ago
Thanks for writing – this seems to be a hot topic as of late! A few other folks have been asking about the dosages of Nattokinase, although no one seems to have a recommended dose as you say. @steve-dragoo – any insight here? I unfortunately don’t take this so I’m not sure how helpful I can be, but hopefully others can share.
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Did you see my post? Plz let me know so I can update if not.
Trying again, last effort got hung up. Yes got your llong message, very interesting.
Let’s see if this goes,