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3rd crash in 2 months

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 10 months ago #57210 by Hal9000

Replied by Hal9000 on topic 3rd crash in 2 months

mrsb, kind of an out of the blue question. Do you suppose one produces more Phagocytes when counts fall with a cold?

ITP Types and Treatments by HAL

Badami
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57296 by Badami

Replied by Badami on topic 3rd crash in 2 months

Son had his cbc today and it was
156000

So it seems that the right dose of myciphenolate is working (fingers crossed)

So now he is on
15mg of prednisone (tapering by 2.5mg every week)
50 mg of revolade (continuing )
And
2000mg of mycophenolate.

Doc has asked us to see him in 2 weeks.

I hope this is the right taper for prednisone!!!

Rob16
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8 years 10 months ago #57301 by Rob16

Replied by Rob16 on topic 3rd crash in 2 months

Badami, It sounds like your son's doctor is on the right track. Very gradual changes, changing one medication at a time, is exactly the way to go, in my opinion.

Is this the new doctor from the 2nd opinion? Did you switch?

Badami
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57302 by Badami

Replied by Badami on topic 3rd crash in 2 months

Yes dear

The new doc is a 75 year old man.
With tons of experience.

Actually my sons old doc recommended me to him.

I'm hoping for stability and him getting off prednisone asap

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

8 years 10 months ago #57309 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

Looks good, Badami! Counts need to come down a bit but maybe the Prednisone taper will take care of that. Stick with it.

Badami
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57310 by Badami

Replied by Badami on topic 3rd crash in 2 months

Yes boss

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

8 years 10 months ago #57313 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

:laugh: You asked!

Badami
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57345 by Badami

Replied by Badami on topic 3rd crash in 2 months

Hi Guys

Stared the 2.5mg taper
Have the cbc in about 2 weeks
Will keep you posted.
Wishing all you wonderful people merry Xmas.
Tons oflove

Badami
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57440 by Badami

Replied by Badami on topic 3rd crash in 2 months

Had a detailed discussion with my son yday (for the 1st time he was open to it and not irritated nor was in hurry to shut me up - he's 19 you see)

His exams get over on 29th dec and has almost a 3 week off.
He says he want's to get off all medicines and just observe for 3 weeks.
His claim is that he will be at home for all this while and he wants to try this NO MEDICINE THING SERIOUSLY.

luckily he has had no symptoms when his counts were really low.

At the back of my mind I know that we are trying to get off prednisone over the next 3 weeks.
His revolade (promacta) stop will definitely crash his platelets.

But he insists saying if the crash comes in he would re start the revolade.

What do you guys suggest??
Shall I OK this?

Completely confused.

Need advice

Rob16
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8 years 10 months ago #57441 by Rob16

Replied by Rob16 on topic 3rd crash in 2 months

19-year-olds are tricky to deal with. Any power struggle will usually backfire and only make him more resistant to your opinions. Does your son get to make his own decision? If so, I would help him to understand that his best chance at getting off of all medicine is to taper off of it slowly and gradually. Stopping abruptly is likely to cause his counts to rebound, and he will end up taking more medicine, not less.

In such situations it helps me to pray for patience to listen and to hear, and wisdom to find the right words to say.

tamar
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8 years 10 months ago #57442 by tamar

Replied by tamar on topic 3rd crash in 2 months

That's a terrible idea, and is probably dangerous, too. Prednisone MUST be tapered if he's been on it for any length of time. You are right that stopping promacta suddenly will likely cause platelets to crash.

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

8 years 10 months ago #57452 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

I agree. Bad idea. His counts will most likely crash and he will end up worse off than he is now and will have to go back on the meds anyway. Prednisone cannot just be stopped. If he quits Revolade, he will have to start all over trying to find a stable dose. Counts will be up and down again for a while.

I know he thinks that since counts look good that he doesn't need the meds, but they look that way because of the meds.

jayinchicago
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8 years 10 months ago - 8 years 10 months ago #57454 by jayinchicago

Replied by jayinchicago on topic 3rd crash in 2 months

Hello Badami,

I tried it for 2 weeks.

I was on 80mg predisone and stopped fully.

I had severe headache for 3 days, viral fever and body pain. All lasted for a weak then went away.

But unfortunately my platelets crashed to 6 and had to be admitted back in the hospital.

Iam doing the similar one right now with nplate help.
Last three weeks, Iam from 80, 60,40 and now 20mg prednisone.

Personally you wont have any issues with prednisone withdrawal since he is already down to 12.5mg but will the platlets hold.

My opinion is try to get on promacta only if his platlets drop and work around it.

If I can hold my platlets will go to zero prednisone.

My hema tells me since I have been on it for just 3 months it would not be a problem.

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

8 years 10 months ago #57456 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

Whether or not a person has problems stopping Prednisone depends on how long they have been on the drug and how high the starting dose was. It can actually be more critical to taper slowly at the end if someone has been on steroids for a few months or more.

Barb111
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8 years 10 months ago #57460 by Barb111

Replied by Barb111 on topic 3rd crash in 2 months

I was on 60mg for almost 3 months. I tapered down to 20 by 10, then 15, 10 and 7.5. I am now going down by 1.25mg at week. I am having minimal if any symptoms. I agree with all the advice from the folks on here. Slower is better.

Badami
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57464 by Badami

Replied by Badami on topic 3rd crash in 2 months

My sons current dose is
Prednisone 12.5mg
Revolade 50 mg
Mycophenolate 2000mg

My plan is to taper prednisone by 2.5mg every week

After which observe for 2 weeks

Then if platelets are steady Then
Revolade 50mg and 25mg alternate days.

Hopefully my son follows my plan.
Taking him again to meet the hem
Next week.

Will keep you all updated

Badami
Topic Author
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 10 months ago #57465 by Badami

Replied by Badami on topic 3rd crash in 2 months

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago #57538 by Hal9000

Replied by Hal9000 on topic 3rd crash in 2 months

Does anyone have an idea why the new doctor upped the Mycophenolate (CellCept) from 1000 to 2000 mg? Is 1000 a very low dose or something?

ITP Types and Treatments by HAL

Badami
Topic Author
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 9 months ago #57543 by Badami

Replied by Badami on topic 3rd crash in 2 months

Hi Hal
Acc to the doc ;Mycophenolate is given on persons body weight and surface area.

MY son weighs 92kgs and is 5feet 111 inches tall. So basis this he needs 2000mg a day.

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

8 years 9 months ago #57545 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

My doctor wanted me on 2,000 mg's a day too and I'm 5' 4", 133 pounds. I started at 500 mg's though, had side effects and stopped the drug.

I'm not even sure why he needs it. He's got enough meds.

Badami
Topic Author
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 9 months ago #57548 by Badami

Replied by Badami on topic 3rd crash in 2 months

Hi Sandi

He has his cbc tomorrow.
He has tapered prednisone to 10mg now.

The plan is hopefully to get off prednisone first.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago - 8 years 9 months ago #57549 by Hal9000

Replied by Hal9000 on topic 3rd crash in 2 months

Thanks for that Badami. This Mycophenolate and Promacta cocktail has me baffled.

I wonder what the doc will adjust if the next count is say, 200? Adjust the Mycophenolate, Promacta, or do nothing?

What will he adjust if the count is say, 100?

My guess is that he will reduce Promacta dose for just about any count greater than 100 - as his goal seems to be to reduce Promacta to zero.

ITP Types and Treatments by HAL

Badami
Topic Author
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 9 months ago #57550 by Badami

Replied by Badami on topic 3rd crash in 2 months

Got his cbc done yday
Counts are 134000.

The 1st plan as I mentioned earlier is to get off prednisone.
At present he is on 10mg.
We reduce it by 2.5mg every Wednesday.

We then see his counts .

One step at a time!!!

Badami
Topic Author
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 9 months ago #57551 by Badami

Replied by Badami on topic 3rd crash in 2 months

Guys my sons blood pressure is 155/90.

He is now on BP pills.

Why Is the blood pressure so high?

Barb111
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8 years 9 months ago - 8 years 9 months ago #57552 by Barb111

Replied by Barb111 on topic 3rd crash in 2 months

My bp raised as a result of prednisone. I am on a low dose bp med until I am off prednisone completely. I started 3.75 today and decrease by 1.25 every week. I started at 60.

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

8 years 9 months ago #57556 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

Mycophenolate can also cause high blood pressure.

Badami
Topic Author
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Parent of a child with itp for 8 years . No platelet stability Post splenectomy

8 years 9 months ago #57749 by Badami

Replied by Badami on topic 3rd crash in 2 months

Update

My sons platelets are at 158000 after reducing the prednisone dosage to 7.5mg a day.

He also is on 50mg of revolade and 2000mg of mycophenolate

Hope fully all goes well till the entire taper of prednisone

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.

8 years 9 months ago #57756 by mrsb04

Replied by mrsb04 on topic 3rd crash in 2 months

Looking promising Badami

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

8 years 9 months ago #57761 by Sandi

Replied by Sandi on topic 3rd crash in 2 months

He seems to be fairly stable for now. That's good, although counts are still a bit too high.

Barb111
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8 years 9 months ago #57772 by Barb111

Replied by Barb111 on topic 3rd crash in 2 months

Sandi, what counts are too high? I thought normal range for platelets were 150 to 400. I am at 164,
12 weeks out from first Rituxan treatment.

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