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How long does it take for dex pulse to start work?

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14 years 6 months ago #16807 by goinggo
This has been a really dark week ... Tuesday went for a CBC, count was 1. Doc put me on IVIG immediately. Wenesday had another CBC just a few hours after the IviIG, too soon? Anyway i had a count of 0. Agreed to do RItuxan the same day which I had been hoping to avoid b/c of breastfeeding. Then did another CBC on Thursday and it was still 0! My doc started me on Dex pulse for 4days at 40mg a day. since I don,t have any bleeding except patechia allover my body, my hemo did not think it was necessary to stay in hospital so I was sent home.
Now I am on day 2 of dex pulse. As far as side effect goes, I am sweaty and can,t sleep but not too bad. But I,m not seeing any improvement in terms of platetes! I haven,t had another count since Thursday but based on my symptoms I think I am stii at around 0! I am getting desperate, and the weekend is coming, Which means I won,t get another CBC until Monday.
How much longer do I have to wait? I heard dex is supposed to work pretty fast! Especially on top of IVIG AND Ritixan!
Thanks for your input.

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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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14 years 6 months ago #16808 by Sandi
Well, Dex can work in a few hours if you are responsive to it.

Rituxan can take 4 to 12 weeks to work, so I wouldn't expect anything from that real soon. I know it's scary to be at 0, but if you have few symptoms, try to relax. Don't assume your count is 0 all weekend - it could be on the way up.

Have you ever had IVIG before? Did your counts respond?
The following user(s) said Thank You: goinggo

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14 years 6 months ago #16813 by goinggo
Thank you Sandi for the quick reply.
I have had quite a few IVIG treatments and responded well to most of them. However recently it is starting to be less and less effective. Prior to this week's IVIG which I haven't seen working at all, I had one 2 weeks ago, it only bumped me from 3 to 32 and lasted for only a few days.
I had hoped to continue doing IVIG so I don't have to give up breastfeeding ... big sigh ... Fortunately my baby is quite adaptive to the bottle so the switch isn't very painful, it's just harder on me since I have to deal with this on top of everything else.
Sandi are you suggesting I might not be responsive to Dex? It is the first time I take Dex ... I had Prednisone before with no much help but a lot of side effects.

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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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14 years 6 months ago #16818 by Sandi
Well, some people are not responsive to Dex. Hopefully, you will be. You can have a response even if you didn't respond to Prednisone.

Sorry you had to give up breast feeding. That stinks, but hopefully Rituxan will work for you and it will have been worth it.

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14 years 6 months ago #16820 by goinggo
Thank you Sandi for the encouraging words. Having a count of 0 for days is not fun and it has really scared me ... especially as a mom to two very young kids, I can't imagine what if something bad happens to me.
You're right, for now I have to try to relax and keep a positive attitude ...
I'm due for another CBC and the second Rituxan shot next Tuesday. Will keep you posted on the results. I really hope my count will go up!
Thanks again for listening to me.

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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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14 years 6 months ago #16848 by Sandi
Good luck - I truly hope your counts are up!

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14 years 6 months ago #16953 by goinggo
Replied by goinggo on topic Update from Tuesday
Update from Tuesday: counts were 78!! :cheer: Surprised at the results b/c based upon the symptoms I would guess around 20-30k... Anyway thrilled by the outcome ... Finally out of the 0 zone ... Feeling relieved ... B)
Now the question is how long the counts will keep up? I hope for a while because I do not want to take Dex any time soon!

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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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14 years 6 months ago #16960 by Sandi
Replied by Sandi on topic Re: Update from Tuesday
Some people can sustain the rise and some have a quick crash. Three's no way to tell where you will fall, but I hope you continue to rise! Good news for now!

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14 years 6 months ago #17190 by xray001
Hi 'goinggo' -- my daughter has ITP. She was diagnosed two years ago, and we finally gave the go-ahead to remove her spleen. She had that done June.

She was not responsive to prednisone at all. She did respond to IVIg, but 30g would only give her improvement for two weeks. We did IVIg every two weeks for two years. She has the wrong blood type for WinRho.

She did do three pulses of Dex. Horrible stuff - she had every side effect she could get. Her counts shot up to the 200's, but would fall rapidly once the dex was stopped.
First treatment -- count of 77 on the day she started (just had IVIg 7 days before this).
At the end of the first four day treatment, her count was 168, but was down to 16 three days later.
Second one - count of 4 on day one, and up to 160 by day 4, down to 22 two days later.
Third one - Had IVIg 7 days prior, so started with a count of 38. Due to the horrific side effects, she did not do the dex for four days, she did every other day for 8 days. Did not do a count at the end, but three days after she stopped the dex, she was down to 2. Needless to say, we did not even consider ever trying that crap again.

We tried Rituxan, but it made no change to her counts either.

We were really left with no choice but to do the splenectomy. Two years of running to the city every two weeks was enough - especially in the winter. I sure did not like travelling on the highways with a kid with a platelet count of 2. What if we were ever to get in an accident?

Good luck wih your decisions.

How old is your baby, and when were you diagnosed? Was it before your pregnancy, or during?

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 6 months ago - 14 years 6 months ago #17235 by goinggo
XRAY001:
I was diagnosed in 2006,before my first pregnancy. But because my counts were steady at 70-80 range, I didn't receive any treatment. Until my first baby was born. My counts dropped to 6 two months after I delivered. I tried prednisone with no success, IVIG only worked short time, and Rituxan with no significant improvement. Then I stopped all treatments and only took some Chinese herbs. Somehow after a while my counts slowly went up and held steady at 50-60 range.
I haven't had any treatment until this year, after my second baby is born. One more time my counts dropped to below 10. And I've been going through the same cycle again: IVIG, steroid (DEX PULSE this time) and RITUXAN. And just like your daughter, Dex Pulse didn't sustain my counts, they dropped to below 10 just a few days after I stopped taking the drug. Now I'm doing IVIG again, hoping it will help while I wait for Rituxan to kick in.
Up to now I'm still defending my spleen pretty hard. But if within the next couple of months my counts are still in the single-digit range, I think I might consider splenectomy an option.
I'm glad that splenectomy has worked for you daughter so far and I sure hope to keep hearing good news from you.

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