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After Prednisone??

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13 years 3 months ago #12638 by cloyd915
After Prednisone?? was created by cloyd915
Anyone know what they might suggest next? The 80 mg of prednisone daily seems not to be increasing my platelets. I am currently at 9000.

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 3 months ago #12639 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
Just heard back from Hema and it looks like IV infusions Gamma globulin. Anyone with experience here?

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 3 months ago #12640 by tigereyes
Replied by tigereyes on topic Re: After Prednisone??
That what I plan on using before the induce me. My hema, OB and neonatologist told me that it is perfectly safe for the baby. Ive had it many many times before and its a long...infussion but not too bad. They typically premedicate with benedryl and tyenol but they may cut the premeds in 1/2 and do a slower infussion rate. If this is your first infussion opt for a slower rate, you can get headaches or fevers or chills if they go to fast.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 3 months ago #12662 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
They tell me its done over a period of several hours and to plan on receiving the treatment 3-4 consecutive days. How soon should I see results? Is this something that I should plan on doing more than once until baby comes?

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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  • server
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  • newcreationchangingdaily
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13 years 3 months ago #12709 by server
Replied by server on topic Re: After Prednisone??
Tomorrow will be my 5th treatment of IVIg. I had 2 last week, one Monday, missed yesterday because of the weather here, one today and finish tomorrow. My counts were only 6 when I started and today they are 317! WooHoo!!! I'm not sure it works that fast for everyone though. And I'm not sure how long it will last, but I'm starting Promacta after I'm done. The treatments take about 5 hours from start to finish. I get Benedryl first so I sleep most of the time. I only had a headache after the first 2 treatments and a sense of things just not being right, but all is well now.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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13 years 3 months ago #12713 by tigereyes
Replied by tigereyes on topic Re: After Prednisone??
usually for me I see an increase in counts before the infussion is over. But the infussions are usually pretty long. My counts stay up for 2-3 weeks sometimes 4, So I usually only do 1 or 2 doses.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
The following user(s) said Thank You: cloyd915

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13 years 3 months ago #12770 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
@ Server~ 6 as in 6000? Ohhh I hope for a jump like that!! Thanks for the heads up!

Anyone have issues with insurance paying? My ins has agreed to pay if done as home treatments not as outpatient in clinical setting. Problem is the home care company wants to administer the first treatment in the hospital. Here begins a tug-of-war...so looks like I might be admitted for an overnight stay then insurance will cover as an inpatient treatment...silly.

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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  • server
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  • newcreationchangingdaily
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13 years 3 months ago #12775 by server
Replied by server on topic Re: After Prednisone??
yes, as in 6000! I didn't get a CBC today, and don't have to go back till Monday, I'm glad with that, I'm tired of being at the hospital! I believe they are still way up there though. Hope the same for you!

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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13 years 3 months ago #12783 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
ohhh so encouraging!! They decreased my prednisone (I'm weening) and the insurance company is being difficult so I've noticed an increase in the bruises...not a good sign. I was at 9,000 on Tuesday.

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 3 months ago #12784 by DeeDee Marie
Replied by DeeDee Marie on topic Re: After Prednisone??
Try not to let the insurance company stress you out too much. Sometimes the added stress works against your platelets. Do you have a PPO or an HMO? I have an HMO and have had some problems off and on, too.

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13 years 3 months ago #12785 by DeeDee Marie
Replied by DeeDee Marie on topic Re: After Prednisone??
I also wanted to let you know that I, too, had the IVIG around 5 times last July and August. At firt it didn't seem to work for me, but then they slowed down the trip (like over a 24 hour period) and it seemed to work really good. Also, it is very important that you drink a lot of water while taking the IVIG--that will minimize the side effects. After my 5th treatment of IVIG, my doctor imformed me that my I wouldn't be able to get any more (wasn't quite sure if he meant my insurance wouldn't cover it or my doctor wouldn't recommend any more). DeeDee

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13 years 3 months ago #12790 by Rhiannon
Replied by Rhiannon on topic Re: After Prednisone??
I have had IVIG in the past and they did it slow. 5 bottles an evening over 5 evenings as an inpatient. I didn't get any headaches or anything but did have a tendency to experience anemic issues which they rectified on the last day by giving full blood transfusion. Which the two together messed a true count reading but usually well into 400+s (UK way of writing the counts). The would balance out in time.

Like others have said, it takes longer, but opt for the slow course because then you shouldn't experience any headaches or sickness. Just once I felt a very tiny hint of not quite right. They stopped the bottle without any questions or checks and waited a good few hours before starting the next. Advantage of being an inpatient is that I wasn't going anywhere.

The trickier thing is keeping your arm staight enough for ivig to go through the vein.... another advantage of being at night.

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13 years 3 months ago #12793 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
@Dee Dee we have an HMO and they have authorized this but with *conditions* the company that is to administer the treatment is uncomfortable with...I don't let it get to me. It is frustrating though.

@Rhiannon~ (Love your name btw) thanks for the post! I might prefer to do this as inpatient anyway because I have a very busy 2 year old at home. :silly:

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 3 months ago #12794 by DeeDee Marie
Replied by DeeDee Marie on topic Re: After Prednisone??
I know how you feel since I, too, have an HMO. You never know what conditions they are going to come up with. I just go with it and try to not let it bother me. At one point, my medical center (through my HMO) actually preferred that I go to USC on their "Trials" so that they wouldn't have to bear the costs of treating me any longer. At first I didn't mind since we were having so many problems finding the right treatment for me. But, I have now been in some-type of remission, and they reminded me that if my platelets were to fall again, they would like for me to seek "Trials" at USC. This isn't coming from my doctor, but the medical center that he works for.

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13 years 3 months ago #12812 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
My insurance company authorized this as a home care treatment. Home care wants to administer the 1st dose in clinical setting *just in case*. The clinic won't allow home care to do it anyway because they have their own pharmacy and nurses. Its enough to get anyone's head spinning. In the meanwhile, my platelets sit at 9 and my pregnancy progresses :silly:

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 3 months ago #12826 by DeeDee Marie
Replied by DeeDee Marie on topic Re: After Prednisone??
They really need to work this out and not put all the pressure on you. It's hard when you are pregnant. Try not to worry too much--but you should push them to work this out. I had to do that a while back when I was in the hospital. Maybe once you have your baby, your platelets might straighten out. I think hormones have a lot to do with ITP.
The following user(s) said Thank You: cloyd915

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13 years 3 months ago #12879 by Rhiannon
Replied by Rhiannon on topic Re: After Prednisone??

cloyd915 wrote: @Dee Dee we have an HMO and they have authorized this but with *conditions* the company that is to administer the treatment is uncomfortable with...I don't let it get to me. It is frustrating though.

@Rhiannon~ (Love your name btw) thanks for the post! I might prefer to do this as inpatient anyway because I have a very busy 2 year old at home. :silly:


@cloyd - you get a choice of being an inpatient? Another cross atlantic difference as far as am aware. I don't have any insurance problems however so can't help you there. Thank you for liking my name;) DeeDee has some good advice there.

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13 years 3 months ago #12882 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
Quick update! My weekly blood test results are in and my platelets are at 5000 now. Their lowest...I am off to the hospital in the AM to *hopefully* start IVIg as inpatient!

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 3 months ago #12889 by tigereyes
Replied by tigereyes on topic Re: After Prednisone??
Hoping the best for you and your little one. Thinking high numbers for you.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 3 months ago #12919 by cloyd915
Replied by cloyd915 on topic Re: After Prednisone??
AHHHHH This insurance issue is making me CRAZY!! Went to hematologist today expecting to start IVIg infusions...my counts at todays draw were 3000. OBVIOUSLY someone needs to give somewhere here...my "regular" hematologist is on vacation to make things more complicated. I saw the covering doctor today and obviously they can not refuse to give me care but the hospital would prefer to get paid. Its just a big mess...now I wait again...HOPEFULLY to start IVIg tomorrow...or later today.

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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