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Newby 1 year 11 months ago #62595

  • Laury501
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Hi, I'm new here. My daughter was diagnosed with ITP recently and her platelets are currently 33,000. I feel a bit odd as she is not a young child. She is in fact 19 years old and gave birth on December 27th to our first grandchild so I may be on the wrong forum :unsure: . The thrombocytopenia was discovered while she was pregnant. At her initial blood work her platelets were 275,000 and then dropped to the 90,000's and continued to drop throughout the rest of her pregnancy. It was assumed that she had gestational thrombocytopenia; however, her platelets have continued to drop since giving birth. She has been on a round of prednisone but cannot really tolerate it while caring for a newborn as it makes her sick to her stomach. Her hematologist has currently told her that she can remain off the steroid unless she drops below 30,000 and/or begins bruising, bleeding. Now she is having mild nosebleeds and her legs are covered in bruises. I have just started her on a daily supplement of chlorophyll capsules and turmeric capsules. I also bought her some aloe juice. I believe that she had an episode of ITP as a young child after having a particularly nasty virus that stuck around for a couple of weeks. By the time we got in to see a children's hematologist, her numbers were back to normal. I feel that the stress of pregnancy triggered the ITP to return but that she has had it in remission since that childhood episode. From what I have read in the last couple of weeks I have found that most medical treatments are brutal and do not last. I am not opposed to advice on other medical interventions that I may not have heard of yet, but I think our focus is going to be on treating her immune system in general. I need her to be healthy and raise this baby! Any advice is welcome!!!! Thanks in advance!

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Newby 1 year 11 months ago #62600

  • Sandi
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Gestational ITP doesn't go away as soon as the baby is born. It can take time until the hormones are back in balance. How are her counts now?

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Newby 1 year 11 months ago #62604

  • Laury501
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At the time she gave birth her levels were in the 60,000's. Now, 2 months later they are in the 30,000's and still dropping. She feels awful most of the time. Her words, "I feel like I'm dying!" She generally has a high pain tolerance and has a habit of not informing me of discomfort until it is unbearable. Obviously she is tired and a bit run-down due to taking care of a new baby, but I have never seen her seem so generally unhealthy. She is also having some fainting episodes and headaches which I took her to the ER for and they did a scan of her brain and there were no bleeds so it was determined to just be migraines which she does have.

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Newby 1 year 11 months ago #62605

  • Laury501
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Also, her postpartum bleeding continued for 6 weeks, stopped for a few days and then went right into her cycle, which was pretty heavy but not too crazy. She was very anemic while pregnant but that corrected itself immediately with the help of iron infusions she received at the end of her pregnancy.

Thanks so much for your reply and any info you can give. I am so glad that I found this site!!

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Newby 1 year 11 months ago #62617

  • Sandi
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Steroids can make a person feel pretty bad, and when tapering, the withdrawal symptoms can be horrible. A person can feel like they are dying. It can cause muscle and joint pain, extreme fatigue, depression and general. overall weakness. I remember it well and it would be difficult to keep up with a new baby. All I can say is that it will end once she is off of the drug for a few weeks. There is a light at the end of the tunnel, but it will take time. There are other treatments out there and most of us agree that Prednisone is the worst one.

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Newby 1 year 11 months ago #62623

  • mrsb04
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Steroid withdrawal is the worst thing in the world. . In my humble opinion (having first hand experience) she might feel better taking a small dose of them for now and retry tapering very very gently when she's feeling better & into a routine with the baby.

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Newby 1 year 11 months ago #62626

  • Laury501
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Mrsb04,
Thanks for your reply! I actually have halfed her dosage. She was taking 20 in the AM and 20 in the PM and I reduced her to just the 20 at night so that the immediate side effects would be while she sleeps. She seems to be tolerating that a little better. I have no idea if that is enough to be effective but we go to the Hematologist on Friday to have her levels checked. I will update then.
Thanks again for the advice!!

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Newby 1 year 11 months ago #62628

  • Laury501
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Sandi,
Thanks for responding! I agree that the steroids are awful. I have had to take them before for bronchitis. I asked her doctor and she even called an ITP "specialist" who said that the only other option is methotrexate. I know from research that is not true. They are considering her stable above 30,000, but are checking levels weekly. After her last visit, bruises were healing and monthly cycle had stopped. Since then she has begun bruising very badly again and having mild nosebleeds so i am guessing that we are going to find that the level has dropped and the half dose of steroids that I am trying to give her has been ineffective.

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Newby 1 year 11 months ago #62629

  • Sandi
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Oh my gosh - no! Methotrexate is never used for ITP. I have no idea what kind of 'specialist' that was. I've used it for Lupus and would never recommend it for ITP use. The long term side effects are horrible. There is a well known list of ITP treatments and Methotrexate is on on it.

I've used Prednisone for bronchitis and ITP - there is no comparison between short term and long term use.

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Newby 1 year 11 months ago #62631

  • Laury501
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Sandi, the specialist was a hematologist who apparently specializes in ITP. We will be telling her that we are not interested in that treatment if you say it is just as, if not more, horrible than the prednisone! Also, if there is no protocol for it.Thanks for that advice! I have been reading here and other sites about the different treatment regimines so that I can go back to the dr armed with info on Friday.

Oh, I was not making light of the long-term side effects of prednisone. I simply meant that when I took it for a short while, it made me feel awful. I could not imagine being on it indefinitely. My daugher only took the full dosage for a week before we decided it was making her too sick. They put her on it when her count was 37,000 and then it went down to 33,000 two weeks later. This week I have tried to get her to take only 20mg at bedtime to see if that is enough to help her. She is still getting dizzy but not as much. If her count is still above 30,000 then I am hoping the dr will not insist on more treatment at this time. I am encouraged by so many on here whose counts are much lower but considered stable. I do worry about her bruising and nosebleeds though. Perhaps 30,000 is as low as she can go.
Thanks again for all of your comments and advice!!!

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Newby 1 year 11 months ago #62632

  • mrsb04
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Your daughter has just gone through pregnancy, birth and entered motherhood, both physically and emotionally draining at the best of times without having to contend with ITP.

I am not a great advocate of high dose steroids but at times they have their uses. I've learnt that hard way that occasionally I have to take a big dose for 3-4 days. When one's system is under stress it produces more of its own steroids. Hers may have lost the ability to do this for the moment.

If her count is above 30 I'd stick with it, if it isn't I'd increase the steroids a little and see if that helps. If it does taper her very slow & see what happens.

I find that having a helping of creamy live yoghurt then taking my tablets cuts out the nausea.

The doctor cannot insist on a treatment. Your daughter has the right to choose or decline.

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Newby 1 year 11 months ago #62635

  • Laury501
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Thank you for the encouragement. I hadn't thought of the yogurt, I will definitely get her some! Yes, this pregnancy has thrown her body for a loop for sure!! She was terribly ill for the first 3 months with hyperemesis gravidarum. And then anemia and ITP the last part. Then the poor kid had to birth a 9+ lb baby with no epidural(thanks to the ITP!) He is a healthy baby though, and we are grateful. Just wish it hadn't taken such a toll on her.

If she is only taking one 20mg dose per day, how do I taper it? Every other day?

Thanks so much for your reply. It has been a great help to me!

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Newby 1 year 11 months ago #62638

  • Sandi
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Laury - how long has your daughter been on Prednisone and what was the starting dose? Her doctor should be helping her to taper, although most of them tend to do it way too fast which results in horrible withdrawal. I wouldn't go to every other day with 20 mg's. She'll need to go down to 15 mg's a day for a while first. Some people even taper by 1 mg at a time. It depends on the length of time they have taken it. Prednisone has to be tapered slowly or a person could have an adrenal crisis which can be very serious. Ideally, it should be taken in the morning because that is when the adrenals produce the most cortisol. I had to break mine into increments though when I was on 40 or 60 mg's because I shook too much, but if it's taken too close to bedtime that could cause insomnia.

I'm just so shocked at the doctor saying that Methotrexate was the only option. It's not even considered to be an ITP treatment and there are quite a few others that haven't even been tried yet. Methotrexate is chemo; pretty harsh for ITP when there are other options.

Here is the list of common treatments:
Rituxan
Decadon
Win-Rho
Promacta
N-Plate
IVIG
They all have pros and cons which we can help you with.

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Newby 1 year 11 months ago #62639

  • 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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I'm currently tapering off prednisone. I was on 20mg for several months.
First drop was to 15mg for 1 month.
10mg for 6 weeks.
8mg for 6 weeks, as of yesterday.
Will go to 1mg drops from 6mg to 0mg.
Cutting too fast can cause side effects and platelet count drops.
Definitely need to be taking as early in the morning as possible.

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Newby 1 year 11 months ago #62642

  • mrsb04
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From personal experience I think that is too fast a taper. I would suggest slower than the standard UK Guidelines of which I have listed the abridged edition below. It took me 6 months to get from 7.5mg a day to 3mg a day.

Gradual withdrawal should be considered for people who have:
Received more than 3 weeks of corticosteroid treatment.
Received more than 40 mg prednisolone daily or equivalent for more than 1 week.
During withdrawal, the dose of oral corticosteroids may be reduced rapidly down to physiological doses (about 7.5 mg of prednisolone or equivalent) and reduced more slowly thereafter.
Suggested method of withdrawing prednisolone
The problem has resolved and treatment has been given for only a few weeks.
Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.
There is uncertainty about disease resolution and/or therapy has been given for many weeks.
Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.

I agree with Sandi about taking steroids in the morning as this is mimicing the body's natural cycle

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Newby 1 year 11 months ago #62648

  • Laury501
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Wow, thanks so much to all of you for the awesome advice and responses. My daughter was started on 40mg a day, taking 20 in the AM and 20 in the PM. She only managed to take them a few days. She forgot to take them a couple of times (new mommy brain.) And then she got sick from them and just stopped taking them (which I am beginning to see may be what's making her feel so awful.) Since I have been trying to get her to take just the 20 at night, I think she has forgotten more than she has remembered. I don't think she took them either time long enough to need to taper (please correct me if I am wrong!) We go back to get her count done tomorrow plus see the results of some extra blood work that was done. I will update after that. If I do need to taper her down, then how do I do it if the pill is 20mg? Do I need to ask the Dr. for a "taper" prescription?

Thanks again! You guys are awesome!!!

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Newby 1 year 11 months ago #62649

  • Sandi
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Laury - Prednisone isn't a drug that you can just forget to take or take whenever it's convenient. I know that she has a lot on her plate (I have a month old grandchild too), but steroids are serious stuff. There should be a schedule and it should be followed. Yes, she will feel horrible if she is taking Prednisone here and there. It will screw up her adrenals and could also cause her counts to drop. I'm not sure if she took them long enough...not sure when she started.

Her doctor should be willing to fill a script for 5 mg and 1 mg pills for the taper. They also come in 10's, but two 5's will be okay.

Good luck tomorrow. Please let us know how it goes.

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Newby 1 year 11 months ago #62651

  • Laury501
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YES! I agree that she needs to follow a med regimen strictly but she is hard headed, I guess, or doesn't take it seriously enough. Thanks for all of your help and I will definitely update tomorrow after her appt.
one more question: Are any of the other therapies an infusion? Perhaps that may work better for her since she can't seem to swallow a pill on schedule.

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Newby 1 year 11 months ago #62653

  • Sandi
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Yes, there are two infusion treatments. One is IVIG, but it takes a long time to infuse and usually only lasts a few days or weeks. It gets old fast. The other one is Rituxan, which is a series of 4 weekly infusions. They take 4 to 6 hours each. It's a biologic and I consider it a heavy duty treatment. I used it in 2004 and had a rare side effect that ended up with permanent consequences. Like I said above, all treatments have pros and cons. It's best to learn about each one and make an informed decision.
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Newby 1 year 11 months ago #62669

  • Laury501
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Well, her levels have risen to 44,000 so that is a good thing. The dr has agreed with us that a 'wait and see' approach is best at this point. She also instructed her to take iron and B12. She has to have her levels checked again in 3 weeks so I am hoping that the supplements will help and her numbers will remain stable or continue to rise.
Thanks for all of the helpful advice and most of all for just listening.

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Newby 1 year 11 months ago #62671

  • Sandi
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Well that's good news! I hope things continue to get better. We're here if you need us.
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