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Weekly IVIG's, no longer working

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #47838 by amberyard

Weekly IVIG's, no longer working was created by amberyard

I've been getting IVIG's weekly since the beginning of the year. We are slowly tapering me off of the Prednisone. Last week 22k and 5mg, they went back up on Pred to 10mg. I can tell my counts are down Petechiae on chest and some bruising. Still on Promacta 75mg and I have to see an Gyn next week to see about a new BC that will stop my periods. I've been on BC non stop (skipping the placebo week) for about a year in a half been working well until my counts went below 100K.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #47846 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

More Petechiae this morning, I normally have treatments after work on Thursday 12:45 but the PA wants to see me again so I have to wait until Friday 1:15 to get treatment. I have a weird feeling they are going to admit me or want to do the 3 day treatment. Still bleeding (just annoying nothing major) and the Petechiae...

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #47905 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

7k today and now daily IVIG's and pred back up to 20mg...

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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

10 years 9 months ago #47983 by CindyAnn

Replied by CindyAnn on topic Weekly IVIG's, no longer working

Amber,

have you concidered having an endometrial ablation -

NovaSure is a one-time, 5-minute procedure that can lighten - or end your heavy period - without on-going pills and without hormonal side effects.

www.novasure.com/

I had it done about 6 months after being diagnosed (about 6 years ago) it has made all the difference. In following your story you have mentioned that you can not have children so this would be a way of stopping the period.

Cindy Ann

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48090 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

This time last week I was getting ivig round 3. 83k Sunday, Monday 188k and Thursday 217k with another round of IVIG's. We stopped the Promacta on Thursday and they want a re count on Monday to make sure I'm not crashing, then back oj weekly schedule of IVIG's on Thursdays.

I have an extra heart beat (had it since 17) and they want me to see heart doc for ekg. I've been short of breath since last Saturday night. Not all the time just if I'm very active or get worked up. Plus allergies are really bad. Gyno gave me a new rx for a pill that is 365 one.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48142 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

121k today and I got an heart appointment on 4/30/15

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48227 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

14k today with IVIG's and two more days of IVIG's. So losing more hours at work and spending my Saturday with the infusion team at the hospital.

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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

10 years 9 months ago #48229 by Sandi

Replied by Sandi on topic Weekly IVIG's, no longer working

Amber - have they ever tried the Rituxan/Dex combo on you? That might be worth a shot.

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poseymint
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10 years 9 months ago - 10 years 9 months ago #48235 by poseymint

Replied by poseymint on topic Weekly IVIG's, no longer working

do you think stopping Promacta caused your counts to fall? Is there a reason they stopped it rather than just lowered the dose?

for me Promacta worked better over time- seemed I got more sensitive to it. 50mg kept me at around 50K platelets. But after 6mos my counts were going over 100K so I quit for a while then went back on a lowered the dose of 25mg. 25mg was then doing the job of keeping me around 50K.

But I'll add- 3 years later I went back on Promacta at 25mg and it didn't do anything. I tried for 3mos and couldn't get my counts to budge above 10K. So i figured I had lost my sensitivity. I then moved on to Nplate.

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Rob16
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10 years 9 months ago #48237 by Rob16

Replied by Rob16 on topic Weekly IVIG's, no longer working

Sandi - When Ellen was on Rituxan and Dex pulses at the same time it made me a little nervous she was taking two immunocompromising drugs. Do you think that for an asplenic patient doing this would be too much? When is it a concern for an asplenic patient to use immunocompromising drugs? Would the IVIG help to offset that risk?

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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

10 years 9 months ago #48240 by Sandi

Replied by Sandi on topic Weekly IVIG's, no longer working

I don't know, Rob. I am usually pretty concerned about the immunsuppression part, but it seems that many doctors don't take that as seriously. From what I recall, Amber was on Prednisone, Rituxan, Vincristine and had a splenectomy all in pretty quick succession. That concerned me but she made it okay.

You'd think there would be something better than IVIG's all the time indefinitely.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48266 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

Update had round two of ivig's on Friday was in ER at 12:15am and out at 5am. Low grade temo, chills, headache and shortness of breath. Ct, xray, blood work (44k) and a breathing treatment. Gave me Zofran and morphine (which only lasted 5 minutes) sent me home. Had an appointment with infusion center at 10:30am, they skipped treat gave me more Zofran and Percocet which really didn't help either. Today temperature seems to be gone but right side of head still hurts and can't take any more Tylenol until tonight. So I'm hoping coffee and Xanax will work. The infusion center said they should slow my treatment a down (been getting them about 2 HOURS) and add fluids. CBC tomorrow at 1:30, and am sure they will want to do some if this headache isn't gone asking for an rx that will help.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48268 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

I've done the rituxan / dex comb but it was before my spleen removal. I'm willing to try anything not to go through this weekend again.

I've been on promacta on and off sine 2013 and nplate gives me headaches.

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Rob16
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10 years 9 months ago #48300 by Rob16

Replied by Rob16 on topic Weekly IVIG's, no longer working

Amber, in following all that you have gone through, I wonder more and more whether all the less common possibilities have been ruled out. I know at one point you said you had the symptoms of h pylori, and were going to be tested for it, but I don't think I ever heard the results.

An undiagnosed tick borne illnesses? There is even one named for an area just southeast of Atlanta: Panola Mountain Ehrlichia. Some tick Borne illnesses cause thrombocytopenia.

Just some random thoughts, but my point is that as unresponsive as your case is, it might be worth double checking to make sure your doctors haven't missed any of the less usual causes.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48308 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

H pylori came back neg in 2013 before spleen removal. I can say I've remember having a tick but I know I've been tested for everything under the sun.

Today 4k and IVGI's
tomorrow 2pm ivigs
Wednesday 1:30 ivig's
Thursday 9:30 ivig's
all with CBC before hand
Doctor appointment next Monday @:45 to talk about what to do since nothing seems to be working. I said something about haven't trying Rituxan since spleen removal, so that could be on the table.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48358 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

21st yesterday and 36k today

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DeeDee Marie
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10 years 9 months ago #48376 by DeeDee Marie

Replied by DeeDee Marie on topic Weekly IVIG's, no longer working

Amber,

Hope those platelets stay up! I know you need a rest from all these meds.

Good luck to higher platelets and good rest.

Dee Dee

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 9 months ago #48377 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

82k today and recheck with doc on Monday then back on weekly ivig's

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 8 months ago #48475 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

Monday 140k and today 3k had IVIG's today and scheduled 8 rounds of Rituxan. Well since they are staring the rounds on a Friday we have to keep them on a Friday. I get it but was hoping not to use all my vacation time on Rituxan days..... just glad to have the vacation time to use....

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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

10 years 8 months ago #48477 by Sandi

Replied by Sandi on topic Weekly IVIG's, no longer working

Amber, you can switch the days if you want to. You could start on a Friday, skip a week and do the next infusion on the day that you want. Rituxan does not have to be given exactly every 7 days. 8 treatments also seems like overkill. Maybe it's time for another opinion?

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Ann
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10 years 8 months ago #48479 by Ann

Replied by Ann on topic Weekly IVIG's, no longer working

Why 8 rounds of Rituxan? Didn't you do a lot last time with no result? Why would you do it all again?

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DeeDee Marie
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10 years 8 months ago #48484 by DeeDee Marie

Replied by DeeDee Marie on topic Weekly IVIG's, no longer working

I agree with Ann. Doing Rituxan with no results seems really harsh. Why do it again?

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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

10 years 8 months ago #48486 by CindyAnn

Replied by CindyAnn on topic Weekly IVIG's, no longer working

Amber,

What are your symptoms if you don't treat? You have been through so much, have you considered not treating and just giving your body a break? Do you currently have active bleeding? Rituxan did not work for you last time - why would you do it again?

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 8 months ago #48493 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

The first time I did Rituxan it was 8 rounds and gave me 7 months. The second time 4 rounds no help then spleen removal. So we are trying Rituxan and schedule out 8 rounds, to see if no spleen makes a difference. I got first round this morning (CBC 3k, I was that yesterday be fore ivig's) got platelets after (first time with no spleen as well). Yes I have active bleeding, mouth and female (lots of clots), the Trans Acid is helping with the bleeding.

Was advised over the weekend if I can't slow down bleeding with Trans Acid or get a headache I can't control go to ER.

It seems like nothing is working anymore, I'm on 15mg Pred still also.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

10 years 8 months ago #48589 by amberyard

Replied by amberyard on topic Weekly IVIG's, no longer working

Monday 12k, Tuesday 4k ivig's, Wednesday 57k (after platelets but before ivig's), Thursday getting ivig's and Friday rituxan.

Still bleeding and petchia all over legs and bruisinf..

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Weekly IVIG's, no longer working

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.