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Brand new ITP dianosis.

7 years 5 months ago - 7 years 5 months ago #56203 by
Replied by on topic Brand new ITP dianosis.
Who knows - besides the drop mentioned above when my dose went from 60mg to 30mg overnight I had another major platelet drop. This time I was not on any treatment, the only symptom I had was a "feeling", nothing else just knew my count was down.

If any symptoms show up you don't like just call and ask for blood work sooner than Thursday. I wouldn't be waiting for the other shoe to drop - get out and enjoy the weather [if it's good], stop worrying, put it on the back burner unless something happens!

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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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7 years 5 months ago #56207 by Sandi
Replied by Sandi on topic Brand new ITP dianosis.
Bruises, bleeding gums, nose bleed, petechiae, etc... Sometimes there are no symptoms.
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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 5 months ago #56209 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
Worked outside the last 2 days. I'm not sitting and waiting although I am making sure I take care.

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 5 months ago #56242 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
Got some good news at my blood doc today. Up to 119 after halving my prednisone down to 30mg. I am dropping down to 10mg now and we will see what happens.

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7 years 5 months ago - 7 years 5 months ago #56243 by Barb111
Replied by Barb111 on topic Brand new ITP dianosis.
that's great news! I am curious what my counts will be tomorrow before my second Rituxan infusion. I had been put back up to 60 from 30 when it dropped the counts dropped to 20. I think if things are good, I will go to 50. Isn't 30 to 10 a big drop, though? My doc said by 10mg a week until 20 then, by 5 until 10 and then 2.5 after that. I know everyone is different.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 5 months ago #56245 by mrsb04
Replied by mrsb04 on topic Brand new ITP dianosis.
That is a rapid taper down to 10mg. You will need to go slower from there on in especially when you get below 7.5mg

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 5 months ago #56246 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
My doc said the big initial drop was to see how my count reacted. He said we would not try the prednisone for long before moving to something else. He seemed pleased that with a 30mg stop I still increased in count. I am still too new at this to know for sure. He said that he generally goes to Rituxan next.

Hope your infusion goes well. Keep making those platelets.

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 5 months ago #56247 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
From what everyone says I was concerned a bit about the big steps and possible crash. My doc says that he has had good results with this method. He has many patients with ITP. He said he really dislikes the prednisone side effects and prefers to move on quickly. He did say if I do fine this time from 30 to 10 that the remaining taper will be slower.

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  • Sandi
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7 years 5 months ago #56249 by Sandi
Replied by Sandi on topic Brand new ITP dianosis.
I'd still be concerned. Anything can happen with ITP and over the years I have seen it all. But most of us here know that big steroid tapers usually lead to platelet drops.

I'm sure your doctor dislikes steroid side effects (we all do), but moving on quickly can cause withdrawal which can be worse. I hope this fast taper works well for you on both counts!
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7 years 5 months ago - 7 years 5 months ago #56251 by
Replied by on topic Brand new ITP dianosis.
This is a hematologist who is doing this to you D? Bet he has never had to take it in his life.

I do not understand a decrease in pred from 30 to 10 overnight - that is hard on the body. That's not a taper.
I wouldn't be happy with a doctor using me as a guinea pig - "My doc said the big initial drop was to see how my count reacted." But he did start you on treatment when your count wasn't that bad right?

I have learned over the years (ITP since 1989 and then add a bunch of other problems over the years) that it is my body and I do have a say in what is done to it and I can question a doctor's "orders" (just ask my neurologist & endocrinologist, both fantastic doctors, and the PCP that I fired non too quietly).

Good luck to you!

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 5 months ago #56252 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
After reading all the posts here I half expected to have a major drop at the appointment today. My doc did say that if everything holds the taper will be smaller.

Thanks for all the feedback.

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 5 months ago - 7 years 5 months ago #56253 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
My doc is a hematologist.
Here is my timeline so far.

October 8 hospitalized with a count of 5. Transfusion and IVIG every 6 hours for 3 days. Released on the 10th count at 20.
Started 60mg prednisone on 11th.
20th count up to 109
21st prednisone cut to 30mg
27th count 119
28th dropping prednisone to 10mg

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7 years 5 months ago #56258 by
Replied by on topic Brand new ITP dianosis.
Must have been someone else with the dr who started treatment with a higher count.

I just hope all goes well for you - we give our experiences when asked, but we are all different in how we react to treatment and how our count reacts.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 5 months ago #56259 by mrsb04
Replied by mrsb04 on topic Brand new ITP dianosis.
My consultant too is a haematologist, I am a nurse of many years experience who ended up at her GPs a complete wreck from tapering steroids too quickly on the advice of my haemo.

I'm just saying please be aware.
5 years I lost my husband very suddenly, treated for PTSD for 2 years as a result that.
Next I lost my mother 2 weeks after my ITP diagnosis.

Coping with all that was a breeze compared to steroid withdrawal symptoms.

I was off sick for nearly a year after my diagnosis initially because I was on high dose steroids and incapable of performing my job and then as a result of the withdrawal.

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 4 months ago #56262 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
I am truly sorry for your loses mrsb.
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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 4 months ago #56263 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
All in all my prednisone experience so far has been mild compared to some of yours. The only side effects I have really noticed is: increased appetite, and intermittent trouble getting and staying asleep. My wife might add grumpy to the list but I think that might just be me not the drugs. :)

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7 years 4 months ago #56347 by rjsmyth
Replied by rjsmyth on topic Brand new ITP dianosis.
Slow withwrawal is needed to allow the adrenal glands to return to normal function.

Too fast - can be big trouble!

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 4 months ago #56692 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
Well had a hemo visit today after 3 weeks on 10mg of Prednisone. My count was down from 119 to 41. I only saw the PA today but the doctor came out as I was making my next appointment and said that I need to go ahead and try Rituxan. If I do it now my insurance will cover it all, if I wait my deductible and out of pocket starts over in January. I really didn't get to talk to him about it much and since I wasn't expecting it I didn't know what to say. I give blood again next week, if the count goes up I will cancel the Rituxan.

What should I expect with this treatment?

What are the most common side effects?

What do I need to ask the doctor next week before I start?

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  • Sandi
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7 years 4 months ago #56693 by Sandi
Replied by Sandi on topic Brand new ITP dianosis.
What to expect: Some people respond, some don't. Some get a partial response which means that counts can go above treatment level and stay there for a while. The treatments are usually boring. I slept the whole time because of the pre-meds. Some people stay awake and read or use an iPad. The first infusion can take 4 to 6 hours. The most common side effect is trouble breathing or an irregular heartbeat or blood pressure. If that happens, they slow the drip and give meds to stop the reaction. Most people do not have a problem. I always felt great the next day and was able to work. There are other side effects that can occur such as serum sickness and PML. Those are delayed. Serum sickness can occur 14 to 21 days after starting the infusions. PML can occur months later and is very serious.

This is the package insert:

druginserts.com/lib/rx/meds/rituxan-1/


Just an FYI: There are other options. You don't need to try Rituxan. It's your decision.
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7 years 4 months ago - 7 years 4 months ago #56694 by Barb111
Replied by Barb111 on topic Brand new ITP dianosis.
I just finished my 4 weekly Rituxan infusions last week. Everyone is different, but I had no side effects. So far, my counts have gone from 20 to 75. It can take up to 12 weeks for full results. My prednisone taper is down from 60 to 20 starting tomorrow.
I did have a brief reaction, itchy and icrease in BP, during the 1st infusion, but I received meds and they stopped for 20 minutes and atarted again. Nothing after that.
I know you have to have a Hep screening beforehand.
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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 4 months ago #56695 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
I realize there are some options but from the start my doc has said Retuxan is his usual next step due to good results he has seen. Looking at all the posts it seems to be a good next choice.

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7 years 4 months ago #56696 by Barb111
Replied by Barb111 on topic Brand new ITP dianosis.
My doctor said the same thing.

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  • Sandi
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7 years 4 months ago #56697 by Sandi
Replied by Sandi on topic Brand new ITP dianosis.
I get that, but please read the insert. Be informed before you make a decision. The side effects that we told you about are the most common, but they can be far worse. I jumped into it without knowing a thing and ended up sorry that I did.

Chances are you'll be okay, but this is not a drug to take lightly.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 4 months ago #56700 by mrsb04
Replied by mrsb04 on topic Brand new ITP dianosis.
I'd be inclined to drop Pred to 7.5mg and see what happens to my count before trying anything else

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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 4 months ago #56792 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
Last week 41 today only 35. Looking more and more like I will doing Rituxan soon.

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7 years 4 months ago - 7 years 4 months ago #56797 by rjsmyth
Replied by rjsmyth on topic Brand new ITP dianosis.
Sandi is right - read up on this treatment on the Net. Rituximab is serious stuff and has a spectacular list of potential side effects one of which amusingly is death!

Did absolutely nothing for me with zero side effects but when it works it can give you a good period of remission, even complete remission in some cases but bear in mind it can have a suppressive effect on your Immune System for 6-9 months after infusion.

In the UK we have to sign a consent form before they will administer the treatment.

If you are not experiencing bleeding episodes with your current levels and want to steer clear of steroids (effective and cheap but horrible long term) there are a number of other medications I would be trying first.

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7 years 4 months ago #56801 by Rob16
Replied by Rob16 on topic Brand new ITP dianosis.
Unfortunately, every treatment has serious side effects. Prednisone may not have a black box warning, but it can cause diabetes, and diabetes can cause death. IVIG (Privigen) does have a black box warning that includes acute renal failure and death. Promacta's black box lists "risk of severe and potentially life-threatening hepatotoxicity." There is a real shortage of science-based information on RELATIVE risks of the various treatments.

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7 years 4 months ago #56806 by CindyL
Replied by CindyL on topic Brand new ITP dianosis.
Just to add my two cents; I did Rituxan in 2011 and have been in remission since. I started responding after the first dose and just kept going up. Had no issues with any infusions and haven't had any concerns health wise in the last 5 years.
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  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 3 months ago #56931 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
USA ITP suffers. How long does it take to get insurance approval for Rituxan. My Blue Cross Blue Shield requires a medical review before approval.
Since this is the next step I really need to get it done this year. I met my out of pocket max for the year and won't have to pay if I can get it scheduled soon.

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7 years 3 months ago #56933 by Barb111
Replied by Barb111 on topic Brand new ITP dianosis.
I live in RI. I have Tufts Health Insurance. Doctor completed prior Authorization form on Friday. Was approved on Tuesday.

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