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Newly Diagnosed & Frequently Asked Questions
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Intro: Newly Diagnosed 2 years 4 months ago #70129

  • gozorakgogo
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I too was never alerted or warned about being at extra risk when I was on 60 mg Prednisone daily back in July or during and after my 4 Ritux infusions which ended in AUgust. Also it wouldnt matter to me because once my 7 weeks out of work ending the last week of August I was back on the job as a mail carrier working among the public delivering mail and most importantly Amazon for all those who no longer go out to the store or in public as much as they used to. Not much I can do about it and to be honest I wouldnt change anything. I wear a mask whenever I am in a store and in close proximity to groups of people. I honestly never bother washing hands and so forth because its not worth the effort to do so hundreds a time a day after the thousands of pieces of mail and parcels I deliver and pick up. If I get it, I get it. Not at all concerned. I would rather have taken my chances with Covid than having to deal with ITP for no telling how long.

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Intro: Newly Diagnosed 2 years 4 months ago #70130

  • MelA
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I would rather have taken my chances with Covid than having to deal with ITP for no telling how long.
Don't have time to read all the posts right now - but gozo I hate to tell you this but:
you may be dealing with ITP for the rest of your life [I'm in my 33 year of ITP].
Covid, well that could shorten you life.

With pre-existing conditions one needs to be more cautious.
Our mail lady uses gloves so she isn't having to constantly wash her hands - also has hand sanitizer in her mail truck.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 2 years 4 months ago #70131

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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I too was never alerted or warned about being at extra risk when I was on 60 mg Prednisone daily back in July or during and after my 4 Ritux infusions which ended in AUgust. Yes you were I told you. "I am surprised at it being used this soon in light of the current Covid 19 global pandemic. I hope you have been advised to shield. Your prednisolone dose is high enough to increase your risk without adding mab therapy into the equation."
I honestly never bother washing hands and so forth because its not worth the effort to do so hundreds a time a day after the thousands of pieces of mail and parcels I deliver and pick up. If I get it, I get it. Not at all concerned.. That is a very selfish attitude; what gives you the right to endanger other peoples' lives by your none adherence to hand hygiene.
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Intro: Newly Diagnosed 2 years 4 months ago #70132

  • CindyL
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We have hand sanitizer in the car and use it whenever we leave a store, no matter how many that may be. When I visit my mother in the hospital, I sanitize going in and leaving and several times during my visit. I'm not just protecting myself, I am protecting others.
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Intro: Newly Diagnosed 2 years 4 months ago #70133

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Exactly how it should be Cindy
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Intro: Newly Diagnosed 2 years 4 months ago #70137

  • MelA
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Well before covid I've had a pump bottle of hand sanitizer in the car and always have used it once I get back into the car.

Good for you Cindy, you are doing things correctly! You are protecting yourselves as well as your mother and everyone else. Bless you, hope your mom is doing well!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Intro: Newly Diagnosed 2 years 4 months ago #70140

  • CindyL
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In order to get into the hospital, we have to register where we are going. Name, patient's name and floor and contact phone number. Then they ask a whole lotta questions. Since I've been doing this so long, I just say I was here yesterday and they ask if there any changes. My reply is always, "I won't do that to my mother or the others". Today, I got a thank you! If I'm not at the hospital, I'm home and vice versa. It just makes sense to me.
Unfortunately, there are lots of people who don't agree with wearing masks so don't. When we go into any store, masks are on.
Mum isn't doing too bad. Still waiting to go to a nursing home. She gets confused a lot. Still knows who we are, which is a good thing.
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Intro: Newly Diagnosed 2 years 4 months ago #70141

  • MelA
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My stepmother is in a residence that has independent living/assisted living/nursing home - she moved over to assisted living a couple years ago. It is a great place - she is in the same town as her daughter/husband - my stepsister got a message a few months back saying there was 1 virus case so they are in total lockdown. There have been no other cases!! No longer on total lockdown as the residents are now going to the dining room to eat & they have started up a couple of the activities again. Still my stepsister can't go see my stepmom unless she makes an appointment, now that it's cold there are 2 locations inside where they can meet socially distanced w/masks on and visit.

The not wearing a mask just drives me crazy!! Restaurants have signs saying No Shirt, No Shoes, No Service and people don't complain about their freedom being taken away - people aren't complaining about their freedom being taken away when they put on a seat belt - and the list goes on. There are just so many "me" people out there, all they care about is themselves.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Intro: Newly Diagnosed 2 years 4 months ago #70142

  • JJ
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They've relaxed the advice to the clinically extremely vulnerable in the UK recently because they realised that locking oneself away is bad for one's mental health.

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Intro: Newly Diagnosed 2 years 4 months ago #70144

  • sleev-les
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Well, 59k this week on 20mg pred. Need to follow up today and see if the Hema wants to taper again. Seems like each taper numbers drop by a bit. Hoping for a level out, but will see.

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Intro: Newly Diagnosed 2 years 4 months ago #70149

  • gozorakgogo
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sure but I would take the tremendous odds of in all likelihood surviving Covid instead of dealing with ITP forever Thats just me but the likelihood of any individual dying from Covid is small. Very small. That is fact. What is also fact is that because Covid is so easily passed from person to person it can make its way to those who are at greater risk very easily without taking precautions which is why social distancing and masking around those who are at risk is essential. I happily wear a mask when in places of business. However as someone who has been out in the public, working, from day one I have had no worries or concerns. Those wonderful people who work in the medical community and who find themselves constantly around covid positive individuals face a different set of circumstances than me however. In their case I certainly understand and support them being extra cautious and even concerned. .

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Intro: Newly Diagnosed 2 years 4 months ago #70150

  • mrsb04
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Latest NHS guidelines for clinically extremely vulnerable people during lockdown part 2
High risk e.g. people taking medicine that makes them much more likely to get infections (such as high doses of steroids or immunosuppressant medicine i.e. Rituximab, Cyclosporin, Azathioprine)
"You're advised to stay at home as much as possible until 2 December. You can still go out to exercise and for essential medical appointments, but try to stay away from other people as much as possible and avoid busy areas"
Medium risk e.g people taking medicine that can affect the immune system (such as low doses of steroids)
"You can go out to work (if you cannot work from home) and for things like getting food or exercising. But you should try to stay at home as much as possible. It's very important you follow the general advice on social distancing. This includes trying to stay at least 2 metres away from anyone you do not live with or anyone not in your support bubble."

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Intro: Newly Diagnosed 2 years 4 months ago #70151

  • gozorakgogo
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no ones life is endangered by my not washing my hands with sanitizer hundreds of times a day while I am on my mail route handling and delivering thousands of pieces of mail. Some of us actually have to be out in the real world working to deliver essential goods to those who do not want to venture out in the real world because of Covid. My point was that it is impractical to wash my hands everytime I touched something that the guidelines suggest the washing of hands afterwards There isnt enough hand sanitizer in the world or time in the day to do so. I take care when I am around other people to not get to close. I wear masks whenever I am around people in enclosed areas.

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Intro: Newly Diagnosed 2 years 4 months ago #70152

  • sleev-les
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Not sure how my thread got this derailed, but could the COVID debate be curtailed so this thread is not seeing increased tensions?


On the initial topic, today starts 15mg of Pred. The taper continues.

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Intro: Newly Diagnosed 2 years 4 months ago #70155

  • Chad89
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Hahahaha. Sleeveless that’s good news that you’re almost off the stuff. I’m at 40mg/ day now and tapering down 10 per week. Has your Dr mentioned what they want to do if the platelets drop more?

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Intro: Newly Diagnosed 2 years 4 months ago #70156

  • mrsb04
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I respect your request Sleve-les.
Once you get down to 7.5mg/day you may need to slow the taper down a bit. The normal physiological dose is about 7.5mg so below that your adrenals will have to start working again.

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Intro: Newly Diagnosed 2 years 4 months ago #70159

  • MelA
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Isn't it nice to be tapering pred?! I'm with mrsb on slowing down soon - but then I'm a big believer in a slow taper.
Good luck!

(PS - sorry about the derailment - that does happen at times, but it doesn't mean we don't care about you :) )
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Intro: Newly Diagnosed 2 years 4 months ago #70161

  • sleev-les
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@Chad89, yes. The Hematologist said that if Pred doesn't hold, I will go on a Rituxan cycle. I asked about TPO-RA's based on discussion in this thread prior and he did not want to go there due to my age (said too young to want me on them the rest of my life).

@mrsb04, I just filled a new script for the 5mg tabs. From 20 to 10mg he has me going down by 5mg each taper. When I get to 10mg (assuming numbers still hold), they are going to slow me to 2.5mg each taper so that I'm assuming is in line with the gradual slowing.

@MelA, It is nice. When I got to the 20mg mark, I noticed that my blood sugar levels were easier to control and less insulin was needed so that is also a positive. I still have not had any crazy side effects outside of that so I'm grateful I haven't experience what others have with the steroid use.

And no worries about the derailment. Some subjects are sensitive and people get very passionate about. With everything going on in the world today, just wanted to get back on to some positivity and support :)
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Intro: Newly Diagnosed 2 years 4 months ago #70163

  • Chad89
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Hopefully the numbers do hold for you. Yeah I can’t wait to be off the steroids. My dr had mentioned those as well if the Rituxan doesn’t work but I also don’t want to have to get a weekly injection or take a pill. Do you get your levels checked every couple of days? I was having mine done every other day but it was stressing me out to much so now I’m trying to not worry as much and only going every 5 days or so.

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Intro: Newly Diagnosed 2 years 4 months ago #70164

  • sleev-les
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Hopefully the numbers do hold for you. Yeah I can’t wait to be off the steroids. My dr had mentioned those as well if the Rituxan doesn’t work but I also don’t want to have to get a weekly injection or take a pill. Do you get your levels checked every couple of days? I was having mine done every other day but it was stressing me out to much so now I’m trying to not worry as much and only going every 5 days or so.


I go just once a week. Each Monday then get results Tuesday with guidance on where to go with the Prednisone. My biggest stressor was worrying about having to go back to the hospital, but talking to the Doc they said I'd really only go back if I had uncontrolled bleeding, gum bleeds, nose bleeds etc. That eased my stress level a lot and now its just the consistent treatment and finding the right path.

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Intro: Newly Diagnosed 2 years 4 months ago #70165

  • mrsb04
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Sleev-les
I went through hell the first time I tried tapering. I created the topic below in the hope that no-one else has to suffer.
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30450-advice-for-anyone-new-to-steroid-tapering.html#67676
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Intro: Newly Diagnosed 2 years 4 months ago #70176

  • sleev-les
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Sleev-les
I went through hell the first time I tried tapering. I created the topic below in the hope that no-one else has to suffer.
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30450-advice-for-anyone-new-to-steroid-tapering.html#67676


So far so good. Thankfully. I hope the course stays as the taper continues. As much as I am ready to be off the steroids, my doctor has been really good with the control aspect and I feel confident in my trust of him and his guidance. It's interesting how everyone is different and experience vary so much. I am keeping my fingers crossed as we get lower that I don't start with symptoms. TIme will tell I guess. It sucks that you went through what you did.
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Intro: Newly Diagnosed 2 years 4 months ago #70187

  • sleev-les
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Yesterdays blood work came in. 66k this week and that is on the 15mg Pred. Tomorrow I start 12.5mg. I'm happy to see some stability and even negligable and within reason, seeing a higher number for a change.

When I was dropping pred and saw numbers drop a little bit each time, it had me wondering if that would trend so this is good to see. Definitely happy today.

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Intro: Newly Diagnosed 2 years 4 months ago #70195

  • Chad89
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That’s good news!!! My platelets seem to be holding for now as well. Honestly now I’m just worried about being immune compromised and COVID.

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Intro: Newly Diagnosed 2 years 3 months ago #70246

  • sleev-les
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Been a busy couple weeks, but last week platelets were 59K. This week they are at 76K. Prednisone is down to 7.5 MG

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Intro: Newly Diagnosed 2 years 3 months ago #70248

  • Chad89
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Nice!! That’s good to hear man! I asked my dr if I could drink and she said in moderation. Thoughts?

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Intro: Newly Diagnosed 2 years 3 months ago #70250

  • mrsb04
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Alcohol has never had any effect on my platelet count.
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Intro: Newly Diagnosed 2 years 3 months ago #70260

  • sleev-les
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Nice!! That’s good to hear man! I asked my dr if I could drink and she said in moderation. Thoughts?


I’m not a heavy drinker either way, but it has never affected my counts. I had 3 beers the Saturday before the last CBC which ended up with 76k. On average I may have a beer or 2 on the weekends.

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Intro: Newly Diagnosed 2 years 3 months ago #70261

  • MelA
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I get teased about my 2 drinks a year - or all my pina coladas when we go to Maui - but I haven't had a problem with platelets.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 2 years 3 months ago #70289

  • sleev-les
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I get teased about my 2 drinks a year - or all my pina coladas when we go to Maui - but I haven't had a problem with platelets.


I'm glad alcohol isn't affecting my numbers. One of my hobbies is homebrewing beer. I'd hate to have to give it up. Its a lot of fun creating my own variety of beer.

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