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TOPIC: Coronavirus

Coronavirus 3 months 3 days ago #68568

  • Lman
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  • We cannot change the cards we are dealt, just how we play the hand.
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You might have heard about the new coronavirus, and the fact that is more dangerous for old people or people with other health condition.
Some are mentioning that autoimmune diseases also increase the risk of mortality, now my question is that given that I'm 23 and receiving nplate only, Is it also considered dangerous?
I know any infection is dangerous in the itp world and might cause bleeding (because platelets might fall during infection)
Oh, and finally one interesting thing, I recall when I used to read articles about itp, I remember two people had recovered their itp after contacting Hongkong-flu! (Oh, and believe me I don't wanna contact any form of disease :) )
My platelets are hovering around 90k btw.

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Coronavirus 2 months 4 weeks ago #68584

  • fiddleinn
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I am also interested if the coronavirus could be more dangerous for those with ITP. My daughter has ITP where her platelet count will go well below 15 without medication. I know that those with ITP should also get flu shots. But there is no vaccine for the coronavirus. Does anyone have any info regarding this?
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Coronavirus 2 months 2 weeks ago #68598

  • Lman
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Patients with an autoimmune condition, such as ITP, will not automatically be at increased risk but, just as with infections in general, they may be more susceptible if they are taking steroids, immune suppressant drugs or have had a splenectomy.

source

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Coronavirus 2 months 2 weeks ago #68599

  • poseymint
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Thanks Lman for the reminder that we may be more vulnerable if we take immune suppressing drugs. Overall I feel my immune system is normal when it comes to fighting viruses. I still have my spleen which I am grateful. My platelets usually go up when I'm sick, other ITPers have drops in counts.

I live in California- there are a couple of cases in my town of Santa Rosa. I heard today that one person in Sacramento area has died. That person caught it on a cruise ship, not the cruise ship that was quarantined in Japan.

Today when I was at the cancer clinic getting my Nplate injection, they had a new screening procedure with check-in. They asked if I had been to China, South Korea, Japan, Italy or Iran recently. Or was I in contact with anyone who had been to those countries. Also asked me about fever, cough, any symptoms. Doctors have stopped shaking hands with patients. People have generally stopped hugging and many are avoiding movie theaters, lectures.

A doctor told me these tips- masks don't work for prevention and shouldn't wear one unless you are caring for a sick person. Try to stay 3 feet away from other people. Wash your hands often. And don't touch any public surfaces. And don't touch your face, mouth, eyes, nose. If you are sick stay home. The symptoms for respiratory distress that requires medical attention is wheezing, shortness of breath and gurgling in the lungs. He also said that the hospitals here are not prepared at all. There are no test kits and no place to send patients who need to be in isolation. So will be interesting how this plays out. I've been noticing how often I touch my face- constantly. But I'm changing my behaviors fast. Stay well everyone!
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Coronavirus 2 months 2 weeks ago #68634

  • DSD88i
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I agree. This is the best summary so far.
But what about individuals who had ITP cause a spinal cord injury? Are SCI patients more susceptible due to weak lung etc? Shortness of breath for example.

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Coronavirus 2 months 6 days ago #68689

  • Hal9000
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Here is some info on what the Coronavirus does to you.
"Here’s what coronavirus does to the body"
www.nationalgeographic.com/science/2020/02/here-is-what-coronavirus-does-to-the-body/
(if an email prompt pops up, reload page and press the load 'stop' button before the email prompt pop occurs)

So the danger is an immune system 'cytokine storm'.
Here is an article on treating cytokine storms with high dose vitamin C (hospital setting). Note that a clinical trial was started to test/verify the efficacy of this treatment with this new virus.
"Vitamin C Works for Sepsis. Will It Work for Coronavirus?"
articles.mercola.com/sites/articles/archive/2020/02/24/iv-vitamin-c.aspx

Also. Here is a overview video on the Coronavirus. Looks to be sponsored by CDC. Some 80% of the total population have nothing to worry about. The percentage is even higher if one is under age 60.
www.youtube.com/watch?v=JKpVMivbTfg

Myself, I'm taking 1 gram of Vitamin C three times a day. Not much compared to the clinical trial dosing, but perhaps good enough to make a difference on the margin.
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Coronavirus 2 months 6 days ago #68691

  • mrsb04
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3g a day. I hope your kidneys can cope. I take 200mg and that's 250% of the daily requirement

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Coronavirus 2 months 5 days ago #68695

  • JJ
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Hope you're stocked up with loo roll for when the runs hits!

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Coronavirus 2 months 5 days ago #68696

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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JJ
I know what you mean there. I can't manage over 500mg a day otherwise I would be living in the bathroom !!!

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Coronavirus 2 months 5 days ago #68698

  • MelA
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What the PDSA says about the virus:
pdsa.org/covid-19.html

That is very expensive pee you have - 3g total a day, too bad you can't test how much is coming out & not used by the body!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Coronavirus 2 months 2 days ago #68729

  • ImPatient
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I only take 200mg vitamin c at the moment too, + some fresh pressed orange and pomegranate juice. When I lived in the US I really liked this vitamin c supplement called Emergen-C though, that was 1000mg. I often took it for the flu and was fine within a day or two. Maybe I'll order it online. I didn't know you can get kidney stones from too much vitamin c. And diarrhea. Is that why so many stores are out of tp? :lol: We still have lots of toilet paper and healthy food, only the junk food and tissue shelves are constantly empty. Looks like there's not much to do yet, except wash hands, stay away from sick people. I saw a woman in some Youtube video yesterday, she said she uses a lotion that smells very intensely for her hands, that's how she remembers not to touch her face. While that sounds a bit funny, I can relate, I forget not to touch my face all the time. But I'm also not too worried, as I live basically in the middle of nowhere at the moment, and am not taking any immune-suppressing drugs. I hope you all are safe and have something useful to do in this time.
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Coronavirus 2 months 1 day ago #68739

  • Butragreake
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MelA wrote: What the PDSA says about the virus:
pdsa.org/covid-19.html

That is very expensive pee you have food - 3g total a day, too bad you can't test how much is coming out & not used by the body!

thanks for the link, i really appreciate it.
I'mPatient, what you're doing is just to help your immune system. not to say that is useless, but it won't help against getting corona. it helps just to recover from coronavirus in case you do get it.
in the end, i hope nobody would get it anymore... all this pandemic is overwhelming
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Coronavirus 1 month 3 weeks ago #68787

  • Hal9000
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LOL, I'm thinking that several of you do not agree with the doctor's well footnoted statements in the second link.

With the recent discovery in Africa that those who are taking Chloroquine/Hydroxychloroquine are NOT contracting Coronavirus infections, the Vitamin C discussion is now pretty academic.

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Coronavirus 1 month 3 weeks ago #68792

  • CindyL
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Someone in the US has died from taking the Chloroquine, so I doubt that's a good thing to take. Besides which, it is for cleaning fish tanks.
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Coronavirus 1 month 3 weeks ago #68793

  • MelA
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Hal9000 wrote: LOL, I'm thinking that several of you do not agree with the doctor's well footnoted statements in the second link.

From Wikipedia:
"Joseph Mercola. ... Joseph Michael Mercola /mərˈkoʊlə/ (born July 8, 1954) is an American alternative medicine proponent, osteopathic physician, and Internet businessman, who markets dietary supplements and medical devices, some of which are controversial."

LOL, nope, didn't read it - won't sign up for it as is required.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Coronavirus 1 month 3 weeks ago #68795

  • marker0357
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Hello,

First time on this forum. I'm interested to know if anyone believe they have been exposed to COVID-19 and if it had any effect upon their ITP. In my case, I believe I had the virus symptoms about 5 weeks ago and last for 3 weeks. It seems to have self-resolved and I have been mostly symptom-free for the last 2 weeks. That said, it seems to have had an effect on my platelet level. Note that I never was tested or confirmed for COVID-19 though presented all of the symptoms. You may recall that early medical directives were only to test those presenting who had traveled to China, etc. or had been exposed to someone known to have COVID-19. Since I hadn't recently traveled and didn't know anyone who was confirmed for it, I didn't meet the screening criteria. I can't describe how ignorant that screening criteria has turned out to be.

I currently get an N-plate shot every 3 weeks as maintenance (Prednisone, Rituxin, and Splenectomy did not resolve in my case). Usually, that protocol works great. During my prior appointment, my level raised to 575 which is quite high, especially for me. I wasn't to concerned as that had happened once or twice before and I just missed a cycle and everything went back to normal. Strangely, after self-resolving for what was thought to be COVID-19, my platelet level tanked from 575 to 4 in 10 days! As expected, I experienced bruising, nose bleed, fatigue, blood blister inside cheek and a hematoma (both which were new symptoms for me). This is what caused me to contact my doctor for blood test and shot even though it was short cycle.

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Coronavirus 1 month 3 weeks ago #68798

  • mrsb04
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Hal 9000 said "I'm thinking that several of you do not agree with the doctor's well footnoted statements in the second link".
Firstly:- Vit C was used IV not orally (as we were discussing on here) in a triple combination alongside Thiamine and Hydrocortisone.
Secondly:- The majority of the quack's supplied references recommend further research is needed to prove that the cocktail works.
Medicine should be evidence based not conjecture based.
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Coronavirus 1 month 3 weeks ago #68827

  • Hal9000
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The words 'over the top' come to mind. All the guy was doing was talk about a new Clinical Trial and motivate what the trial was trying to achieve and how the trial came about.

The link to the clinical trial is foot note number 16:
"Vitamin C Infusion for the Treatment of Severe 2019-nCoV Infected Pneumonia"
clinicaltrials.gov/ct2/show/NCT04264533

LOL, maybe being shut-in because of the Corona beer virus is affecting everyone?

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Coronavirus 1 month 3 weeks ago #68828

  • Hal9000
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Thanks for the story marker0357. It's good information on this subject. I guess a fever and a persistent cough were the major symptoms? As I recall there is website that can screen one for the virus by answering simple questions. Is that what you did, go to the website?

On a related subject. Three weeks between Nplate shots is not common. Off hand, I can only think of one other person that has done that. What does your count go down to on that third week? Below 50? Also, would it be fair to say that your counts have slowly improved over time/months, while taking Nplate? That is, you started out at a notably higher dose? Or. Have you always taken the same dose but just less frequently over time/months?

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Coronavirus 1 month 2 weeks ago #68842

  • marker0357
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Thanks for the comment, Hal.

I had a low grade fever, I believe, on the 2nd and 3rd day. Unfortunately, I did not take my temperature but did awake 5 or 6 times at night will chills, heavy coughing, and difficulty breathing. It felt like my windpipe had completely closed off and I was drowning. This all started around 2/23 so there really wasn't a website set up at that time. In my state, I was likely among the earliest exposures with symptoms. As I said, in my case, symptoms lasted about 3-3 1/2 weeks. I was very fatigued for about the 10 days or so. The cough was heavy from about day 3 until day 10 and then tapered off from there.

When I first started taking N-plate, it was weekly and a full shot. It took probably 6 months to dial in a shot and 1/2 every 3 weeks. I have been on a shot and 1/2 every 3 weeks for the last 2 years or so. There has been a few occasions where my platelets were too high (400+) and so I skipped until the next period. Usually, my count drops from 350-400 down to 50-100 during that 3 weeks. I call it my "oil change". My count has not improved but N-plate has proven to be a good maintenance drug, certainly better than anything else. For me, there has been no side effects either. I've resigned myself that this will be a lifetime regimen (vitals, CBC, shot...repeat). The only time that I short cycle is when I start to see bruising which usually happens when my platelets are under 30.

Since my platelet level dropped to 4, I received a double shot, then it went up to 910 this week. Obviously, I did not get a shot this week but will again be returning for a CBC check. At this point, it looks like I'm back to weekly until I get dialed in. Something knocked me off course and I believe it was my exposure to the virus. I have been reading that there has been reports of significantly lowering of platelets on those with COVID-19 who reach critical condition. My level dropped like a rock in a very short period of time, seemingly while I was symptomatic with COVID-19. I was pleasantly surprised that I was not hospitalized with that level. I had been previously hospitalized at a level of 7 and 14 (initial diagnosis).

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Coronavirus 1 month 2 weeks ago #68844

  • miluz2017
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  • Joyfully married. Was diagnosed in August, 2017. My lowest count was, 9. Started Promacta, 25 mg in January, 2018. Currently on Promacta 12.5 mg
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Hello! re. vitamin C dosage, I had never thought that high doses could be so harmful. I take over the counter, t 1000 mg x day, split it in two doses. That had been my practice way prior to ITP diagnosis. :unsure: May have to re-consider? Ditto to what has been said regarding self-care during the pandemic as ITP patients. If nothing else, good humor helps; remaining in this community to gather facts, opinions, encouragement helps. One advantage of having ITP is that it has forced me to notice what my body does, how I move (I was Mrs. Bumping-Triping-Cutting-Moving Faster Than I Should, etc. Today I am Mrs. Exquisitely Slow-moving, Careful turner of Corners and Handler of Cutting Tools:silly: ) As long as I keep my good practices + listening to Dr. Fauci, I am not afraid of COVID-19. Stay sane, everyone!

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Coronavirus 1 month 2 weeks ago #68846

  • MelA
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Hi miluz - I wouldn't think your 500mg 2x a day of vitamin C would be too high [but I am not in the medical field]. I take 500mg a day and if allergies are bothering me or I feel I'm getting sick then I will increase that to 500mg 2x a day [breakfast & dinner]. Chances are what was not needed in the 1st 500mg taken would have been removed from the body [nice way of saying pee'd out :) ] by the time the 2nd dose is taken.

What is crazy are these mega-super-ultra doses like the 3g of C a day mentioned above, that to me is "over the top"!

If you haven't had diarrhea or any stomach problems then I would think you are fine to continue the way you are - again, I'm not in the medical field, you might want to ask your doctor next time you see him/her. I take Ester-C as it is easy on the stomach.

Hope you are doing well and your count a good one!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Coronavirus 1 month 2 weeks ago #68889

  • PurdueRose
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In reply to Cindy L - A few people took the fish tank cleaner version of hydroxychloroquine. They definitely died but in that case it was not the drug. It is a different form www.google.com/amp/s/www.washingtonpost.com/nation/2020/03/24/coronavirus-chloroquine-poisoning-death/%3foutputType=amp
Don't do drugs without a doctor's supervision.

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Coronavirus 1 month 2 weeks ago #68891

  • CindyL
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I agree about not doing drugs without doctor supervision. And most real doctors aren't suggesting that drug.

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Coronavirus 1 month 1 week ago #68896

  • miluz2017
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Thank you, MelA! I appreciate your insight. Stay well you too, platelets up!
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Coronavirus 1 month 6 days ago #68927

  • Hal9000
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marker0357 wrote:
...
When I first started taking N-plate, it was weekly and a full shot. It took probably 6 months to dial in a shot and 1/2 every 3 weeks. I have been on a shot and 1/2 every 3 weeks for the last 2 years or so. There has been a few occasions where my platelets were too high (400+) and so I skipped until the next period. Usually, my count drops from 350-400 down to 50-100 during that 3 weeks. I call it my "oil change". My count has not improved but N-plate has proven to be a good maintenance drug, certainly better than anything else. For me, there has been no side effects either. I've resigned myself that this will be a lifetime regimen (vitals, CBC, shot...repeat). The only time that I short cycle is when I start to see bruising which usually happens when my platelets are under 30.
...

Marker, the trials and tribulations of user 'JayInChicago' may be of interest to you.
pdsa.org/discussion-group/search.html?searchuser=JayInChicago&exactname=1&searchdate=all&order=dec&childforums=1&limit=50&start=0
He is the one I mentioned who (eventually) would get an Nplate shot every 3 weeks like you. But one time, he decided not to get a shot even though he was low (around 50). Turned out, his counts remained at (roughly) that count without any Nplate.

There is a small group of folks on this forum that have achieved this sort of 'partial remission' after taking either Nplate or Promacta (and nothing else) for many months.

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