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Treatments that didn't work before work now?

BigDave
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13 years 11 months ago #22381 by BigDave

Treatments that didn't work before work now? was created by BigDave

My first bout with ITP was 4 years ago and Prednisone did absolutely nothing for me. Doses as high as 200mg couldn't even get me past 10k without WinRho or IVIg in the veins. Now my second battle is here and my new Hemo put me on just a regimen of 50mg of Prednisone which raised an eyebrow because I had just got finished showing him a chart that illustrated it was completely ineffective before (he wouldn't let me bring in my projector for my slideshow but oh well)

Now I haven't been back yet for an official count but I get instant feedback as an insulin dependent diabetic. Every blood sugar check and injection site will leave dark bruises and will be slow to stop bleeding. One day on Prednisone and I can't even tell where I stuck myself.

While it is all speculation at this point it just got me wondering if anyone else had that kind of experience where they went with a treatment option that failed before and suddenly it starts working?

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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

13 years 11 months ago #22397 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Well, first of all I'd say that bruises and bleeding at injection sites are not good indicators. Symptoms can also change.

It would be unusual for a treatment to work now when it didn't before, but you never know. If a treatment can stop working after a period of time, why couldn't one start working at a later date? ITP is caused by different antibodies and those can come and go. I also think they each respond differently to treatments, so you may be dealing with a different 'type' of ITP this round.

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BigDave
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13 years 11 months ago #22411 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Good points Sandi.. I can tell you the last time I had to deal with this I got pretty good at telling where my counts were going to be via blood draws (within about 3-5k) by looking at recent injection sites and blood sugar testing (more so blood sugar because injections can sometimes hit a vein) . Especially below about 50k .. anything above that all started to look the same.

I wont know really how I am responding until I get checked again on Friday but it is too the point now that I almost have to squeeze the life out of me to get a drop of blood to check sugar levels and it doesn't even leave a mark. Night and day compared to the free flowing stream I had last Friday at 11k.

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Mark
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13 years 11 months ago #22420 by Mark

Replied by Mark on topic Re: Treatments that didn't work before work now?

BigDave

I know what you mean -

I had bloodwork done weekly for years and years so I got pretty good at gauging my platelet numbers ...
I never got a bandage. I just press gauze on the needle "hole" and look after a few minutes. Depending on how long it takes to stop bleeding ,I could often guess pretty closely at what range my values would be in....

Mark

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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

13 years 11 months ago #22423 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Well guys, having had normal platelets for 7 years, I experience many different things with blood draws. I get blood work frequently for another disorder. I've had nasty bruises and hematomas at the injection sites and sometimes not even a noticable hole. I have bruises on my legs right now that are just as bad as when my counts were below 10. I have no idea how I got them.

I used to think I could tell what my counts were but ended up surprised quite a few times, so I stopped using symptoms to guess.

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kelly7476
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13 years 11 months ago #22424 by kelly7476

Replied by kelly7476 on topic Re: Treatments that didn't work before work now?

I have to agree. The lab is the only sure indicater. Ive had counts under 3k with no bruises and multiple bruising with counts above 50k.

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BigDave
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13 years 11 months ago #22429 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

I don't want people to think I feel finger stick reactions are a substitute for blood work. I just found it fascinating my last go around how close I could get. I even kept it as a chart. After about three weeks of getting blood drawn three times a week I got it down as long as the count was below 50k. Above that and I could be way off. It just became a game of sorts to occupy my mind.

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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

13 years 11 months ago #22451 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Let us know how you do on your prediction this week - good luck! (Not good luck on the prediction, good luck on the count)

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BigDave
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13 years 11 months ago #22454 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Thanks Sandi! I will happily take being waaaay off if the number is high

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Mark
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13 years 11 months ago #22477 by Mark

Replied by Mark on topic Re: Treatments that didn't work before work now?

Yes - good luck on your next draw, BigDave -

and I agree- I also was not suggesting a substitute for labwork....

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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

13 years 11 months ago #22485 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Not to worry - I didn't think that either of you were suggesting that! Only the seasoned veterans would consider putting off a count in lieu of symptoms anyway...most rely on the labs.

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BigDave
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13 years 11 months ago #22512 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

OK, so in my defense I did say that once it's above 50k all bets are off

I could tell it was above 50 and it turned out to be 219k! Now we taper Prednisone and see what happens. Still fascinating to me since Prednisone did nothing the last time...

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Mark
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13 years 11 months ago #22521 by Mark

Replied by Mark on topic Re: Treatments that didn't work before work now?

Good news!

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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

13 years 11 months ago #22528 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Great news! Good for you and I'm glad you were right!

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BigDave
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13 years 11 months ago #22537 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Thanks gang! Here is to hoping it was just a blip brought on by that nasty virus and that it will go back to a safe level without treatments like it was before.

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BigDave
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13 years 10 months ago #22917 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Well after tapering from 50mg to 30mg for two weeks I went back and had got checked. 134k.. Doc isn't happy with how much it dropped with the taper but wants to continue to taper (albeit slower) and check again in two weeks. He wants me to think about what I want to do long term. He mentioned that I could possibly be a candidate for a study on the effectiveness of subcutaneous Rituxan injections which I have to admit piqued my interest. We'll see how it goes. I for one am fine if it levels off at a safe number and I am off Prednisone.

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BigDave
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13 years 10 months ago #23456 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Tapered to 25mg for two weeks and got checked again. 178k.. continuing slow taper down to 20mg for two weeks and check again.

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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

13 years 10 months ago #23459 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Sounds good!

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KittieG
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13 years 10 months ago #23471 by KittieG

Replied by KittieG on topic Re: Treatments that didn't work before work now?

Thats great news Big Dave - congrats!

I have to chime in on symptoms, because for me, even with counts lower than 10k, i don't bleed much. I don't get purpura, petechae, bruising.... and I don't bleed much if cut/stuck. I was gardening this weekend and accidently hit my knuckle on a rock (and you KNOW how much knuckles bleed), and it was an actual chunk out of my finger, and I know my counts are low. but it stopped on its own after just a minute or two - not even a bandaids worth of blood.

I sure do WISH there was a home system, or a "for sure" way of knowing without running numbers. I feel like I live at the hemotologists office (or on the way there, or looking for parking...)!

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BigDave
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13 years 10 months ago #23476 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Thanks KittieG! That's pretty remarkable how little you show at 10k. You must have super-platelets! I read somewhere that the differences were negligible between a finger stick CBC and the traditional method. Really is a shame that they don't have a finger stick platelet checker like I have for blood sugar readings.

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Ann
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13 years 10 months ago #23483 by Ann

Replied by Ann on topic Re: Treatments that didn't work before work now?

You could get a decent microscope and make your own smear on a slide and see how many platelets you've got. I wonder if anyone has ever done that.

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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

13 years 10 months ago #23505 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Would you really want to know? Once a week was plenty for me....too much at times. If counts are down, you find out when you get there. It's not like diabetes where you could have insulin shock or a diabetic coma.

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KittieG
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13 years 10 months ago #23507 by KittieG

Replied by KittieG on topic Re: Treatments that didn't work before work now?

I love the idea of counting your own platelets under a microscope!! Just the image is hilarious!

I think if there was a reliable home test I'd totally do it. But I'm probably exactly the person who shouldn't do a home rest - because I'd just look at the results and if they were above 10k, I'd do nothing probably!

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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

13 years 10 months ago #23508 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

There you go!

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Ann
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13 years 10 months ago #23510 by Ann

Replied by Ann on topic Re: Treatments that didn't work before work now?

I could do with it. And I'd only do it once a week just so's I know what dose of Nplate to do. It's hard when your counts are up and down and you don't really know where you are.

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BigDave
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13 years 10 months ago #23531 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

ten thousand one hundred and thirty eight, ten thousand one hundred and thirty nine... "What's that dear?... Our reservations are for seven thirty"... seven hundred thirty one.. seven hundred thirty two... crap!!! One... two...

(I know that isn't how it works, but that is how I picture it in my head)

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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

13 years 10 months ago #23572 by Sandi

Replied by Sandi on topic Re: Treatments that didn't work before work now?

Too funny, Dave.

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BigDave
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13 years 9 months ago #24025 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Checked again at 20mg and I am at 173k.. still can't get over the fact that when I was originally diagnosed 2007 Prednisone was completely useless and now I seem to be holding strong. Tapering to 15mg and testing again in a few weeks.

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BigDave
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13 years 9 months ago #24276 by BigDave

Replied by BigDave on topic Re: Treatments that didn't work before work now?

Checked on 15mg Prednisone - I am at 189k and tapering to 10mg and checking again in a few weeks..

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Treatments that didn't work before work now?

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.