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update for a new year

  • weirdjack
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11 years 1 week ago - 11 years 1 week ago #45886 by weirdjack
update for a new year was created by weirdjack
Okay, I have been a little lax in getting a count lately, none since October.
Dropped by LabCorp on my way home Monday and left some of the red stuff for them to examine.

My hematologist called yesterday to let me know the magic number: 21k !
Cool, I haven't hit 21k for over a year. Usually seem to stay between 9k and 15k lately.
Not that a 5k either way makes a huge difference, but higher is a nice start to the new year.

So I am just going to hang with the treatment of a gram of Cellcept and 2 double IPAs daily. B)




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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 week ago #45891 by Sandi
Replied by Sandi on topic update for a new year
Good for you, Jack! I'm happy to hear about your earth-shattering high number! ;)

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11 years 1 week ago #45895 by Joerg
Replied by Joerg on topic update for a new year
Good start into 2015. Fingers crossed it stays like this!

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  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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11 years 1 week ago #45905 by CindyAnn
Replied by CindyAnn on topic update for a new year
Way to go Jack!!!

Great number for you and the IPA has had to have an effect :P

Still, no juggling chainsaws :woohoo:

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  • weirdjack
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11 years 3 days ago - 11 years 3 days ago #46056 by weirdjack
Replied by weirdjack on topic update for a new year
But...but....chainsaws are fun! :)

I won't be juggling anything for a few days. Friday I will be getting a lower molar sliced-out (and an upper tooth rebuilt & crowned at the same time). Luckily I have a dentist and oral surgeon who do not freak out over low platelets. Historically, I have never had an issue with tooth removal.

But hey, this will mean a liquid diet for a couple of days.
Yesterday I found a 4-pack of Sixpoint Hi-Resin to keep me going.
Now If I could just locate a 6-pack of Bells Hopslam.....I can dream... :silly:

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  • weirdjack
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10 years 11 months ago #46117 by weirdjack
Replied by weirdjack on topic update for a new year
Now and then people with ITP ask about getting oral surgery or other such dental work.
My count at the start of this thread (a week prior) was 21k...highest it has been in two years.

Friday I had a lower molar sliced-out and an upper tooth rebuilt/crowned in the same session.
Did the crown work first...no problem.
Then it took most of an hour to remove the molar. It was stuck on an angle and just did not want to come out intact. The inside of my mouth looks like it's been hit by a bus and it hurts like hell, but that is just bruising from all of the tools, stitching, etc. There wasn't really any abnormal bleeding, a couple of stitches closed things up and it is healing quite well.
So yes, depending on the individual, oral surgery and such are not always freakout worthy.
This is the third tooth I have had surgically removed in the past 12+ years with ITP, no issues.

Just thought it might be interesting to some.
Living with ITP is not all doom and gloom.


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  • Melinda
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10 years 11 months ago - 10 years 11 months ago #46121 by Melinda
Replied by Melinda on topic update for a new year
Jack my new hematologist told me I have super platelets and the normal count for me an ITPer is different than someone without ITP. She said she'd give the ok to brain surgery with a count of 50k (I don't need it, she was just giving an example).

Glad all went well with your dental work - hope your mouth is feeling better soon!!

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  • weirdjack
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10 years 11 months ago #46122 by weirdjack
Replied by weirdjack on topic update for a new year
Yep Melinda, 'super platelets'! There really ought to be a theme song for them.
Most of us with the 'platelet destruction' forms of ITP generate large, very sticky platelets.
Add platelet micro-particles into the mix and we can usually 'plug a hole' pretty well.

Just thought I'd pass on my experience of yet another complicated extraction which was a non-issue as far as ITP is concerned. Since the subject does come up somewhat often around here.
You know, the old: 'oral-surgery-is-the-end-of-the-world-scenario'. It is not.

Sorry, I'll shut up now.

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  • Melinda
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10 years 11 months ago #46136 by Melinda
Replied by Melinda on topic update for a new year
I think it is great you have shared your experience Jack - I was just saying what my new hematologist [not sure I like her] told me, I've had ITP for ages & no one ever told me that before. She also told me she wouldn't want my count to go high real fast as that can cause thrombosis [hmmm, how was my body not to do that back in 2002 when I had the flu and it went from below norm to 401k all on it's own].

A couple years ago I had dental surgery [cutting gum and bone] - not fun.

I hope your mouth is healing well!

PS- do NOT shut up :)

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 11 months ago #46140 by Sandi
Replied by Sandi on topic update for a new year
It's all true, Melinda and we've been saying it here for years. ITP patients do tend to have larger, stickier platelets and they are now saying that ITP can be a thrombotic disorder as well. Of course you can't help it if your counts go up on their own like that, but problems can arise from treatments that shoot counts up quickly. She makes sense when she says that ITP'ers normal counts should be lower. I've actually never heard of any doctor saying that, but the literature suggests it. I'd be quite content to have counts around 50k. I wish I did.

It's too bad you don't like her much, are you stuck with her now or can you ask to see another Hemo? What didn't you like? How are your counts these days?

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  • Melinda
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10 years 11 months ago #46141 by Melinda
Replied by Melinda on topic update for a new year
I knew our platelets were larger & stickier since we make so many new ones to replace those being destroyed - but I never thought of them as super or that my normal count would be different from a non-ITPer. She's the only one I've heard say that too Sandi. Or

She also told me that if counts do drop real low she would do dex for 4 days [think it was dex]. Her 1st love is hematology [she's an onc-hematologist] - she has a lot of ITP patients too.

Both she and I are strong-willed - so who knows, maybe that is good? I can change but my dear departed hematologist said she was the one he would recommend for me if he retired. So I'll keep her.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 11 months ago #46145 by Sandi
Replied by Sandi on topic update for a new year
Ha ha, the Butting Heads Syndrome! Been there. A doctor like that can be good if she is also willing to listen and sometimes bend. I guess only time will tell. Would you do Dex or would you prefer to argue for Win-Rho since it worked for you in the past?

There isn't a different, written reference range for those with ITP, but that's actually not a bad idea. It would calm people down and keep them from striving for those high numbers....doctors too! They keep trying to make us normal and we're definitely not! :woohoo: :woohoo: :woohoo:

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  • Melinda
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10 years 11 months ago #46149 by Melinda
Replied by Melinda on topic update for a new year
Sandi I hate, literally HATE, any type of steroid - so I don't know. She did tell me Win-Rho is now given in the hospital [at least that is what my HMO does]. I just don't know what I'd do - she seems to go for the dex, wonder if she's ever been on steroids.

You made me laugh - the Butting Heads Syndrome :)
She was saying this or that can't trigger ITP - I told her it is not known what causes or triggers ITP.

Yes, it would be nice if there was a platelet range for ITPers - I think most of us start doing better when a count of 150-400k [or whatever someone's lab says] isn't the goal.

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  • weirdjack
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10 years 11 months ago #46153 by weirdjack
Replied by weirdjack on topic update for a new year

She makes sense when she says that ITP'ers normal counts should be lower. I've actually never heard of any doctor saying that,

She's the only one I've heard say that too


Odd.....My hematologist has said that to me for several years now. He sees a few folks like me.
It's why he doesn't freak out with my 'low normal'....low works fine for me....it's normal.
One could almost count the squirmy purple pluggers without a microscope. :)

Sure, I could drive myself and everyone around me insane trying to achieve some world standard of 'normal' (whatever that might be today)....or I could get on with life.
As Alfred E. Neuman has so aptly put it for many decades now, "What, me worry?"



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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 11 months ago - 10 years 11 months ago #46157 by Sandi
Replied by Sandi on topic update for a new year
Yes, they do give Win-Rho in a hospitals setting these days. Slow drip and lots of observation time.

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  • Melinda
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10 years 11 months ago - 10 years 11 months ago #46161 by Melinda
Replied by Melinda on topic update for a new year
I'm just out of it since haven't had to treat for a while. When I had WinRho in 2002 it was given via IV slowly at the infusion center, afterward I think they had me stay for a bit and then I drove home.

Jack I didn't have a hematologist from 1 Jan 2004 until probably 3 years ago - my HMO didn't deem it necessary. Then when I needed the gum surgery the doctor wanted it straight from the horses mouth [a hematologist] that is was ok to have the gum surgery with whatever my count was at the time. That's when I finally got another hematologist. And with a "decent" count I didn't see him but once a year & talk to him on the phone and since I was doing well the super platelets never needed to come up really - this wonderful man passed away unexpectedly a few months back so now I have a new hematologist and she's the one who mentioned super platelets and an ITPers norm not the same as a non-ITPers.

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10 years 11 months ago #46280 by Winnifred
Replied by Winnifred on topic update for a new year
Weirdjack - Wish you could of come with me to my dental appointments. Maybe than my bad tooth would be gone instead of me slowly wiggling it in hopes it loosens and falls out!

My counts were in normal range and yet they would not pull without a doctors note and platelet count!

Sandi said They keep trying to make us normal and we're definitely not!

I too wish they would stop I strongly believe way too many people are over treated. I'm lucky being in Canada where so far have not had to pay. It just makes me wonder how many others who live in countries where they have to pay are loosing their homes because of doctors who over treat!

PS: normal is overrated! I'd rather be myself and be slightly off!

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  • weirdjack
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10 years 11 months ago - 10 years 11 months ago #46284 by weirdjack
Replied by weirdjack on topic update for a new year

Weirdjack - Wish you could of come with me to my dental appointments. Maybe than my bad tooth would be gone instead of me slowly wiggling it in hopes it loosens and falls out!
My counts were in normal range and yet they would not pull without a doctors note and platelet count!


Wow.....It does depend on the doctors involved. Quit wiggling and find a new dentist! ;)

Three years ago I went to the nearest location of my dental company. The dentist there freaked out and did much like yours. He wanted a current count, he wanted to talk to my hemo, wanted extensive interviews between me and the oral surgeon, etc etc etc. I never went back... He was more concerned about his own liability than about my health.

Six months later I went to a different location of the same company and saw a different dentist.
He wanted to know my bleeding symptom history for dental work, not my count. The oral surgeon (same one first dentist would have sent me to) was cool about it all as well. I didn't even need to get a count for them. I did anyway, but it wasn't required...they didn't even ask.
This time was the same....no big deal...other than it was tough to extract (not ITP related).

The stitches finally came out yesterday and it is all healing fine. A 'normal' experience.


Disclaimer; Everyone is different.


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  • weirdjack
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10 years 11 months ago #46285 by weirdjack
Replied by weirdjack on topic update for a new year

PS: normal is overrated! I'd rather be myself and be slightly off!


I cannot recall ever being 'normal'. :)

Perhaps that helps in living large with ITP?


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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 11 months ago #46829 by EmilyK
Replied by EmilyK on topic update for a new year
I thought alcohol was a serious "no no" with ITP. I know while on rituxan and high prednisone it is off limits but i sure would look forward to a day when i can have a beer or glass of wine like the pre-ITP days. Sounds like there might be hope of this small sense of normalcy.

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10 years 11 months ago #46830 by Christine
Replied by Christine on topic update for a new year
Weirdjack and others who question "normal" What is normal. My hema asked once did I feel normal and I asked "what's normal"??
I know I have joined this thread late but when I had extensive dental work done I ASKED my dentist to call my hema so I wouldn't be the go between and perhaps miss important details. This all helps if you completely trust your doc and dentist. This has happened twice and I have had no problems.

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  • weirdjack
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10 years 11 months ago - 10 years 11 months ago #46841 by weirdjack
Replied by weirdjack on topic update for a new year

I thought alcohol was a serious "no no" with ITP.


No, no.
There is a difference between 'alcohol affecting platelet count' and 'alcohol affecting a drug you are taking' to treat ITP.
I've asked my hematologist about alcohol and ITP repeatedly for over 12 years now. A couple of good beers with dinner does not affect my platelet count or treatment at all.
Getting roaring hammered by binge-drinking every night might be another matter....I don't.
Actually, on my last visit to The James, my hematologist and I spent 15 minutes discussing beer styles.
He may specialize in ITP research, but he knows his local brews also. :)


Weirdjack and others who question "normal" What is normal.


I don't question normal.....Normal is what works for each individual.
The term itself is so relative, that it is almost meaningless.





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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 11 months ago #46845 by Sandi
Replied by Sandi on topic update for a new year
As far as I know, alcohol is not contraindicated with either Prednisone or Rituxan. As far as ITP, you might want to abstain if counts are low but otherwise, most can drink in moderation.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 11 months ago #46846 by EmilyK
Replied by EmilyK on topic update for a new year
Thanks for the info. Once (notice the optimism) i am more stable, i will celebrate with a beer! Something to look forward to. Second rituxan today. Hoping for another uneventful few hours sleeping.

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10 years 10 months ago #46865 by Ann
Replied by Ann on topic update for a new year
My haematologist once said that it's fine to drink alcohol with any count at all but not to drink so much as to fall over and bang my head when my count was low. It works for me.
The following user(s) said Thank You: EmilyK

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10 years 10 months ago #46885 by Winnifred
Replied by Winnifred on topic update for a new year
Alcohol now there's a subject I like! This coming Saturday going to an 80's dance and plan on drinking. That is why I treated last Friday so I'd be good.

I will be dressed like Cyndi Lauper! All 80's all night long!

PS: Remember to eat before you drink and do not mix alcohols. When you mix you end up with hangovers.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 10 months ago #46888 by EmilyK
Replied by EmilyK on topic update for a new year
Thanks for the light heartedness. I spend so much time crying it is great the have a good laugh! Enjoy Friday night.

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10 years 10 months ago #46898 by CindyL
Replied by CindyL on topic update for a new year
Julia, "Girls Just Wanna Have Fun" and see pictures! Have a good time!

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  • weirdjack
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10 years 10 months ago - 10 years 10 months ago #46899 by weirdjack
Replied by weirdjack on topic update for a new year
Okay...as long as my thread has become a free-for-all; how many of you have seen the 1973 episode of 'SuperFriends' entitled 'Journey to the Center of the Bat!' ? Batman gets infected by Chemo (the villian, not the treatment). So, to save Batman's life, Aquaman and The Atom shrink down to 15 microns and go cavorting through Batman's blood stream. Along this journey, they hitch ride on a lymphocyte (the photo below).
The dialog surrounding all of this is hilarious...Aquaman thinks it is a platelet;

Aquaman: Good boy. You were magnificent. Yes, big hug!
The Atom: He's not hugging you. "He" is merely interpreting you as a foreign body to be surrounded and destroyed.
Aquaman: Sure feels like a hug to me. And since we found you in Batman's blood stream, I think we'll name you Platelet.
The Atom: Except that's a lymphocyte.
Aquaman: Platelet it is!

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