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Intro: Newly Diagnosed 6 months 1 week ago #69895

  • sleev-les
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Hi all,

I was recommened this site from a Facebook group. Thought I'd introduce myself and share my short journey so far. I am a type 1 diabetic for 34 years, had diabetic retinopathy since Oct 2016 and now ITP since diagnosed on 9/17/2020 (who knows how long it was actually there).

I started noticing bruising on my stomach every time I did an insulin injection. Also noticed more bleeding when I had to insert a Dexcom CGM sensor every 10 days. I had routine bloodwork scheduled with my Endo so the timing was perfect for discovering the new mess of a situation. My results came back with a platelet count of 10k. My Endo got me in touch with a Hematologist and when he saw the results said get to the ER. Since it wasn't diagnosed yet, I am assuming that's why I was sent to the hospital. After every blood panel known to man, a bone marrow biopsy and ultrasound he knew the first night it was ITP. Counts in the ER showed 14k. They gave me a bag of platelets and took counts an hour after. They went to 44k. Next morning checked again and 26k.
They started me on 4 days of dexamethasone at 40mg and 3rd day released from the hospital. 5th day I moved to 50mg prednisone and had bloodwork 4 days after discharge. Numbers were 120k so Hema dropped me to 30mg and went in this past Thursday for that weeks blood draw. Counts dropped to 16k and he put my prednisone back up to 60mg. I go for bloodwork in about an hour to see if they came up. I have a feeling if they did, its minimal since I am noticing bruising again and the little red dots. Bruising on my stomach at injections sites from insulin. red dots around abdomen.

I've been trying to read a lot and seems that up and down is the way this goes, especially in the beginning. Fortunately I am not seeing any side effects from the prednisone outside of it impacting my insulin response so I have adjusted diet and got that back under control for the most part. I'm hoping numbers stabilize to something reasonable by the end of Month as I have to get injections into my eye for the diabetic retinopathy. This, I can tell, is going to be a giant juggling act. It is stressful and trying to stay positive, but this is something else I now am stuck with. I guess part of my stress is knowing I'm combating 3 different issues for the rest of my life and it's intimidating. Hoping to see some positive and going to do my best to be patient as we work through this. Just thought I would say hi and introduce myself.

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Intro: Newly Diagnosed 6 months 1 week ago #69896

  • MelA
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Hi! First - your dog is beautiful :) Good for your endo for referring you to a hematologist - my opinion though is the hematologist could have done a slower taper on the prednisone instead of dropping you from 50mg to 30mg in one swoop. I was dropped from 60mg to 30mg and my count hit the gutter, after that back up to 60mg and a very slow taper [we moved overseas at that time].

I was diagnosed in 1989 with a count of 11k and dropping - I looked like I had been beaten in a back alley with a 2x4. I do not have diabetes though to complicate matters.

You are doing the right thing by reading and learning all you can - have you click on "Patients + Caregivers" near the top of the page under the Log Out tab on the left side?

I'm sure mrsb will see your post and respond - she's a wealth of information. Keep us posted and do let us know what your count was today. You are going to do fine!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 6 months 1 week ago #69897

  • sleev-les
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Hi,

That's Remi. He is a Catahoula Leopard Dog. He's the oldest (3) of our two boys (Australian Shepherd 2, 3 this month).

I have been reading a ton on this site. I think he dropped me so quick since my numbers shot up so fast. I'm waiting on yesterdays results and if he tries to taper again and its more than 10mg I'm going to question it. I don't want to be in this same boat so fast again. I am having no side effects from the prednisone and even though its not good long term, I want to be safe in balance the taper and counts.

Thank you for the response.

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Intro: Newly Diagnosed 6 months 1 week ago #69898

  • MelA
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I've never seen in person a Catahoula Leopard Dog - you tell him he is a handsome guy! Is he as active as an Australian Shepherd?

You are doing things so correctly - you are reading and knowing all you can [with another chronic disorder that makes you even smarter]. Could it be he was concerned about prednisone with your diabetes? As mentioned I was diagnosed a long time ago - back then it was pred or splenectomy so I went with pred - we then moved overseas while I was on 60mg a day and my hematologist in Tokyo was fabulous, then in Hong Kong my hematologist didn't know much and was always wanting my spleen. I learned a long time ago that I can say no, it is quite easy - so whenever she'd want my spleen I'd say no. To this day I still question and discuss - when I had a bad drop in count due to a tetanus booster I refused prednisone since I didn't want to look like the Pillsbury Dough Boy for our son's wedding. I feel one has to trust their doctor, but also needs to be able to disagree with him/her and come to a solution that is good - it is our body.

You are very fortunate you aren't having problems with pred - it took a few weeks for me before it reared its ugly head and I turned into a witch :)

Hope you get that count soon!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 6 months 1 week ago #69899

  • sleev-les
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Catahoula's are prey driven. They were bread originally in Louisiana and Catahoula means "Sacred Lake". They can go up to near 100 pounds (our boy is about 70). They are stubborn, but he's very affectionate. Hog dog is another name for them as they are typically used in hunting hogs. There are some crazy pictures online where people put kevlar armor on them to protect them during a hunt. Our boy is family and not a hunting dog. Loves everyone.

I got my results though. Numbers back to 56k. Go down to 50mg prednisone as of this morning. He is concerned about blood sugar and the prednisone, but I've adjusted diet and limited carbs and my blood sugars have been still great. I have had to add insulin and my endo increased my prescription. It looks like 50k plus may be my magic number. Under that is when I see bruing and petachae (sp?) so I'm hoping that will be a consistent tell if by chance I do get lucky and see some kind of remission. Fingers crossed. I'll keep this updated as well as I can get on.

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Intro: Newly Diagnosed 6 months 1 week ago #69900

  • MelA
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Very interesting, thank you for that information!

Yeah, I was wondering if being diabetic might be the case - however usually a big drop in pred means a big drop in platelets. You are doing things smartly with your diet and keeping in touch with your endo. Do you endo & hematologist talk with each other? 56k is a good count really, I myself like above 60k for me - but there isn't really any difference between 56 & 60k. What we strive for is a good count not a normal count. Yes please keep us updated on how you are doing!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 6 months 1 week ago #69902

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Good morning sleev-les
Welcome to the club, I had never heard of a Catahoula Leopard Dog until you joined.

The international ITP treatment guidelines were updated last year and can be found at found at the link below.
ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the (the link looks weird but works)

The guidelines state "Recommendations for initial treatment of newly diagnosed patients
1] Corticosteroids are the standard initial treatment for adults with ITP who need treatment and do not have a relative contradiction: predniso(lo)ne at 1 mg/kg (maximum dose 80 mg, even in patients weighing >80 kg) for 2 weeks, to a maximum of 3 weeks, or dexamethasone 40 mg/d for 4 days, repeated up to 3 times.
2] If a response is seen (eg, platelets >50 × 109/L), the predniso(lo)ne should be tapered, aiming to stop predniso(lo)ne by 6 weeks (maximum 8 weeks), even if the platelet count drops during the taper.
3] If there is no response to the initial dose within 2 weeks, the predniso(lo)ne should be tapered rapidly over 1 week and stopped.
4] Longer courses of steroids should be avoided, although occasional patients may benefit from continuous low-dose corticosteroids
(eg, ≤5 mg/d). This type of ongoing low-dose corticosteroid treatment should be based on the individual patient’s needs, prior therapies, and so forth.

Corticosteroids remain the standard initial treatment of newly diagnosed patients and should be used for a limited time. Corticosteroids have multiple beneficial.hemostatic effects on platelets by decreasing platelet clearance and increasing platelet production. Additionally, they may reduce bleeding, independent of the platelet count increase, via a direct effect on blood vessels. Although the consensus panel believed that some patients were able to maintain a platelet response to a daily dose of predniso(lo)ne ≤ 5 mg, the side effects of corticosteroids outweigh their benefits in the long-term".

I would imagine they want you off pred asap as
a] high dose steroids in Type 1 diabetics is never a good idea especially for those who already have retinopathy. Please make sure that your kidney function is monitored regularly you don't want nephropathy too.
b] Your immune system is now suppressed during a Coronavirus pandemic.

There are many medical treatments you can try. The guidelines explain them well. One is Rituximab, UK ITP association has recommended not using that during the pandemic. Personally I would ask for a TPO-RA. I wish I had been put straight onto them instead of trying various others first none of which worked and had horrid side effects. Don't even consider a splenectomy at this stage, the guidelines are quite firm on that.

The most annoying thing about ITP is stability of platelet count is not guaranteed and even if one manages to achieve stability things can cause a drop. I only have to get a sniff of a virus and my count tanks down, but a short blast of pred for 3-4 days usually brings it up again.
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Intro: Newly Diagnosed 6 months 1 week ago #69904

  • sleev-les
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Thanks for the additional information. Thankfully I do have my blood sugars under control already so now the next step is getting to some consistency. I'm still on the 50mg Pred since my bloodwork, but have a virtual appointment with my hemo tomorrow so I'm curious what he says and I'm planning on asking what's next on the plan if the Pred does not keep my numbers at a reasonable level after tapered off. I will bring up what you mentioned about Tavilesse (sp?). I definitely need to keep numbers in reason as I do get injections every 2 months for my retinopathy. My other blood work is always monitored consistently through my endo and kidneys/liver etc have all been good. My bone marrow biopsy seemed to find nothing odd even thought the hemo said there were abnormal cells, but nothing to be concerned about. That was when I had my first appt with him. The pathologist ran more tests and I just saw the final report and nothing odd so who knows what the initial abnromal meant.

What really has me curious now as I'm am learning to cope and be comfortable with this is how long it actually went on. Something I'll never know, but hoping for some consistency and normalish life (I say it that way as diabetic, retinopathy and this still is a bit off normal, but maintainable for sure).

Mel, my Endo, Optimologist and now Hemo sent reports and results to each other so they are in tune with each other.

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Intro: Newly Diagnosed 6 months 1 week ago #69906

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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 didn't mention Tavalisse, aka Fostamatinib, it is not a TPORA it is an SYK inhibitor. I was part of the UK branch of the Fostamatinib trial. Did absolutely nothing for me. FDA has licensed it for ITP treatment despite it having a success rate of approx 20%. Personally that % would be too low for me to consider a treatment. However each person responds differently to medicines so it may well work for some. Glad all your specialists communicate.

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Intro: Newly Diagnosed 6 months 1 week ago #69907

  • MelA
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Thanks for mrsb - your input & knowledge is always appreciated!

seleve-les - we all have a new norm :) My bone marrow biopsy was fine too. Really the only thing I've stopped doing since diagnosis in 1989 is skiing and that was because I'm not good and I like my bones the way God made them not because of ITP.

Great that your 3 doctors are communicating - lots on here have specialists who don't! With my HMO my medical history is an open book for all my doctors to see and thankfully they do and they do communicate!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Intro: Newly Diagnosed 6 months 1 week ago #69908

  • sleev-les
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I apologize. I am still trying to figure out what treatment is what and learning about them. I just think I confused myself and thought they were the same. Glad there are a lot of treatment options, but still getting my handle on them as well. Thank you so much for the information.

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Intro: Newly Diagnosed 6 months 1 day ago #69960

  • sleev-les
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mrsb04 wrote: Good morning sleev-les
Welcome to the club, I had never heard of a Catahoula Leopard Dog until you joined.

The international ITP treatment guidelines were updated last year and can be found at found at the link below.
ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the (the link looks weird but works)

The guidelines state "Recommendations for initial treatment of newly diagnosed patients
1] Corticosteroids are the standard initial treatment for adults with ITP who need treatment and do not have a relative contradiction: predniso(lo)ne at 1 mg/kg (maximum dose 80 mg, even in patients weighing >80 kg) for 2 weeks, to a maximum of 3 weeks, or dexamethasone 40 mg/d for 4 days, repeated up to 3 times.
2] If a response is seen (eg, platelets >50 × 109/L), the predniso(lo)ne should be tapered, aiming to stop predniso(lo)ne by 6 weeks (maximum 8 weeks), even if the platelet count drops during the taper.
3] If there is no response to the initial dose within 2 weeks, the predniso(lo)ne should be tapered rapidly over 1 week and stopped.
4] Longer courses of steroids should be avoided, although occasional patients may benefit from continuous low-dose corticosteroids
(eg, ≤5 mg/d). This type of ongoing low-dose corticosteroid treatment should be based on the individual patient’s needs, prior therapies, and so forth.

Corticosteroids remain the standard initial treatment of newly diagnosed patients and should be used for a limited time. Corticosteroids have multiple beneficial.hemostatic effects on platelets by decreasing platelet clearance and increasing platelet production. Additionally, they may reduce bleeding, independent of the platelet count increase, via a direct effect on blood vessels. Although the consensus panel believed that some patients were able to maintain a platelet response to a daily dose of predniso(lo)ne ≤ 5 mg, the side effects of corticosteroids outweigh their benefits in the long-term".

I would imagine they want you off pred asap as
a] high dose steroids in Type 1 diabetics is never a good idea especially for those who already have retinopathy. Please make sure that your kidney function is monitored regularly you don't want nephropathy too.
b] Your immune system is now suppressed during a Coronavirus pandemic.

There are many medical treatments you can try. The guidelines explain them well. One is Rituximab, UK ITP association has recommended not using that during the pandemic. Personally I would ask for a TPO-RA. I wish I had been put straight onto them instead of trying various others first none of which worked and had horrid side effects. Don't even consider a splenectomy at this stage, the guidelines are quite firm on that.

The most annoying thing about ITP is stability of platelet count is not guaranteed and even if one manages to achieve stability things can cause a drop. I only have to get a sniff of a virus and my count tanks down, but a short blast of pred for 3-4 days usually brings it up again.


I asked my Hematologist about TPO-RAs as we got into a plan B discussion on this past Fridays follow-up visit. He said because I'm younger, he didn't want me on them for that long of a time period. He wants plan B to be Rituxan if the prednisone does not work.

On that note, my CBC came back from this past Monday at 89k (50mg pred). Got the results yesterday so today I'm starting 40mg. This is where I keep my fingers crossed going below the 50mg. I'll keep updates each week as I have them.

I hope everyone is doing well.

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Intro: Newly Diagnosed 6 months 1 day ago #69962

  • Chad89
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Glad to hear it’s working for you. Keep us updated.
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Intro: Newly Diagnosed 6 months 12 hours ago #69969

  • MelA
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I hope the drop of 10mg of prednisone isn't too much - hope your count stays up sleev-les ! Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Intro: Newly Diagnosed 5 months 4 weeks ago #69984

  • sleev-les
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So far not noticing any bruising and that has been my tell at extreme low numbers. Still clotting well also. Not a full proof tell of whether its working or not, but fingers crossed. 10mg is what I dropped last week and the week before as well. Dr. said it would go by 10's until 20 then at 20 we go down by 5mg. I'll keep updating as things progress.

Only odd thing I notice now is my right quad feels like a phone is vibrating against my leg. When I was a bigger gym rat I'd get it so often and was related to a muscular twitch. Seems its back, but lighter. Just have to get up and walk around. Only happens when stuck at my desk all day (which also drives me nuts haha).

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Intro: Newly Diagnosed 5 months 3 weeks ago #70029

  • sleev-les
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Got this weeks labs back. At 40mg Pred my numbers dropped a bit to 67k. Doc said to taper down to 30mg so this morning that starts. Fingers crossed. Last drop to 30 tanked my numbers, but it was also a very fast drop.

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Intro: Newly Diagnosed 5 months 3 weeks ago #70031

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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 wouldn't worry too much 67 is a great count. You need to get off pred asap. Something else can be tried if your count drops and you are symptomatic.

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Intro: Newly Diagnosed 5 months 3 weeks ago #70040

  • sleev-les
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Plan B is Rituxan. I’d love to stay stable and get off the prednisone. Each week we drop of the numbers are over the 50k mark.

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Intro: Newly Diagnosed 5 months 3 weeks ago #70042

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Sleev-les
If you can manage a count ≥ 30 without meds that would be great. Unless of course you are symptomatic with that sort of count.
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Intro: Newly Diagnosed 5 months 3 weeks ago #70047

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When they were low my bleed times and bruising occurred. It wouldn’t be as bad if I didn’t have to take insulin multiple times a day and insert a continuous glucose monitor. The CGM has ruined shirts from the bleeding. I’m curious what next weeks blood work shows. If it stays reasonable I’ll be a little more hopeful as the Pred continues to taper.

Thank you for all the response. I’m glad I’m able to talk with you and others about this. I have still so much to read up on.

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Intro: Newly Diagnosed 5 months 3 weeks ago #70049

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Sleev-les
Could you try an insulin pump?

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Intro: Newly Diagnosed 5 months 3 weeks ago #70050

  • sleev-les
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I have avoided them for personal reasons. I am also very active so having something else sticking out of me was a turn off. I've had a couple discussions with my Endo about it. If I was a sedentary person, it might have been a better option. I like the flexibilit of the pens. It's just finding the balance I guess.

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Intro: Newly Diagnosed 5 months 3 weeks ago #70053

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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One of my friend is a nurse too on her feet for 12 her shifts. She swapped to an infusion pump about a year ago, the pump sits neatly in her pocket of uniform/jeans etc. She says her control has never been so good.

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Intro: Newly Diagnosed 5 months 3 weeks ago #70054

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That is one thing I have been very happy with on the pens. My A1C's have at highest been 6.3. Last one taken at the hospital when I was just diagnosed with ITP was 5.4. Previous was 5.7. Even on the Pred I've adjusted diet, recalculated insulin and my blood sugars have been great. Not advocating the steriods since I want off soonest, but keeping diabetes in check has been important. I have talked with people that love the pumps. I just can't get over that hump quite yet.

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Intro: Newly Diagnosed 5 months 2 weeks ago #70096

  • sleev-les
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Just a quick update to my journey:

Numbers came back at 63k this week at 30mg Prednisone. Got the ok to drop to 20mg as of today. Good to see a little stability and hoping to it holding while I continue to taper pred.

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Intro: Newly Diagnosed 5 months 1 week ago #70122

  • Chad89
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That’s awesome that it’s holding. I’m down at 50mg of prednisone right now. Going to taper to 40 on Tuesday. Anybody hear anything as to how worked we should be with COVID and being on moderate to high dose prednisone?

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Intro: Newly Diagnosed 5 months 1 week ago #70124

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Over here in the UK on that dose of Pred alone you would be classed as being in the high clinically vulnerable category and advised to stay at home excepting emergencies. Then you have to add Rituximab into the mix

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Intro: Newly Diagnosed 5 months 1 week ago #70125

  • sleev-les
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@Chad89

I'm not counting my chickens, but next blood work is today and results tomorrow so that will tell if the taper continues or plan B comes into play. I'm along for the ride, living life and just keeping an eye out on signs that the numbers may have dropped (i.e. bruising, longer bleeding etc)

mrsb04 wrote: Over here in the UK on that dose of Pred alone you would be classed as being in the high clinically vulnerable category and advised to stay at home excepting emergencies. Then you have to at Rituximab into the mix


I haven't seen any guidance like that in the states. I am careful regardless on where I'm heading as my wife is pregnant so I want my soon to be son to be safe and our family as a whole. We also have protocols at work to keep in line with social distancing and high risk categories.

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Intro: Newly Diagnosed 5 months 1 week ago #70127

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Sleev-les
"Immunocompromised state (weakened immune system) from blood, bone marrow, or organ transplant; HIV; use of corticosteroids; or use of other immune weakening medicines" www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html#immunocompromised-state

I am careful regardless on where I'm heading as my wife is pregnant. You are a diabetic the fact that your wife is pregnant is irrelevant. "Having type 2 diabetes increases your risk of severe illness from COVID-19. Based on what we know at this time, having type 1 or gestational diabetes may increase your risk of severe illness from COVID-19." www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html#diabetes

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Intro: Newly Diagnosed 5 months 1 week ago #70128

  • sleev-les
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mrsb04 wrote: Sleev-les
"Immunocompromised state (weakened immune system) from blood, bone marrow, or organ transplant; HIV; use of corticosteroids; or use of other immune weakening medicines" www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html#immunocompromised-state

I am careful regardless on where I'm heading as my wife is pregnant. You are a diabetic the fact that your wife is pregnant is irrelevant. "Having type 2 diabetes increases your risk of severe illness from COVID-19. Based on what we know at this time, having type 1 or gestational diabetes may increase your risk of severe illness from COVID-19." www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html#diabetes


I was more alluding to the comment about not leaving the home unless it's an emergency.. I know I am high risk and wife is as well. CDC has the listed actions, but did not notice a stay at home recommendation as the UK guidance.

I continue to monitor my health and watch any changes. So far I've been good and continue to do what I can to keep myself healthy. Unfortunately, staying home isn't in the cards as I have to work much like many others. Hoping a downward trend is in the near future, but time will tell.

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