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Question about an ITP crisis

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10 years 8 months ago #50954 by Andie75
Question about an ITP crisis was created by Andie75
Hi all,
I have a sister with ITP who is currently in a crisis with ITP. She is currently 38, diagnosed at age 10 and has only had one other crisis during her pregnancy with her first child. About 10 days ago she noticed petechia all over her body an in her mouth. She went to the dr. And lab results showed platelet level of 2. She was in the hospital for 4 days where they began prednisone treatment and did two infusions of immuno globulin(sp). She was discharged at a platelet level of 17,with a prescription of prednisone and orders to restrict physical activity.
Her platelets continued to climb to 30 a few days ago and are now going down again to 12. They want to give her another immuno globulin infusion Wednesday to see if that helps. She is having a really hard time. She normally works out 6 days a week very hard. She has worked really hard to make her body how she wants it and she is terrified of gaining weight on prednisone. Currently they only have her on a 10 day course, but now that she has dropped again I don't know how long they will continue it. I told her who cares if she gains a few pounds if her blood is healthy (totally the wrong thing to say).
Questions for those of you that have had lows like this. When can she start working out again? Does she need to modify her intensity or frequency? Are there other treatments that people have had success with that have fewer side effects than prednisone? Why would her levels go up and then down while on prednisone? How can I encourage her and ease her worries? She is really concerned for her health. The doctor told her at a level of 2 she could spontaneously bleed internally. She has 2 children and has been under a lot of relationship stress for the last several months with her husband. Her doctor says that stress could be a factor but the relationship issues are out of her control to a certain extent? Any info or advice is appreciated!
A worried sis

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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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10 years 8 months ago #50959 by Sandi
Replied by Sandi on topic Question about an ITP crisis
It's likely that 10 days of Prednisone will not do much for her counts in the long run. Most people with ITP are on them for months and still drop as they taper. IVIG is also a temporary treatment which usually lasts a weeks or so.

There are other treatments, but they have side effects as well. Your sister should read about all of the options so that she can suggest them to her doctor and become part of the decision-making. Prednisone is usually the first treatment tried since it is not as expensive as most of the other treatments. I doubt she would experience much weight gain in 10 days but that really is the least of the worries.

Very few people die from ITP even with very low counts. People with ITP tend to have larger platelets and platelet fragments that can work quite well. Counts over 30k are considered to be safe so if she can at least maintain that, she should be fine. Normal counts are not necessary.

As for working out, she's probably need to modify that a bit until counts go up some. I would think that heavy lifting would be a bad idea, but she needs to ask her doctor about that.

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10 years 7 months ago #51110 by Andie75
Replied by Andie75 on topic Question about an ITP crisis
Thank you for the reply. Her platelets dropped to 12k and they did another infusion of ivig. She is having serious insomnia on the prednisone. Are there any sleep aids that are safe to take with prednisone and ITP?

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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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10 years 7 months ago #51116 by Sandi
Replied by Sandi on topic Question about an ITP crisis
Most of us don't use sleep aids....doctors are hesitant to prescribe them because of the side effects. Some of us have used Xanax which can calm people a bit at bedtime. Insomnia is one of the bad side effects but it does go away with the taper. Prednisone side effects are bad, but they are temporary.

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10 years 7 months ago #51380 by Essemess
Replied by Essemess on topic Question about an ITP crisis
The best sleep aid for me when I was on high doses of prednisone (and I tried many that didn't work) was Benadryl. I hope your sister is doing better.

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10 years 7 months ago #51384 by Ann
Replied by Ann on topic Question about an ITP crisis
When I was on steroids I didn't see any point in forcing sleep so I just got up and did things. I got so much done during my prednisolone time that I quite enjoyed it. I sorted out cupboards and drawers, did washing and ironing of things that don't get done often, like curtains. I don't understand why people want to take drugs on top of drugs but maybe that's just me! I just went with it, and still do. I sometimes play piano all night when I can't sleep (digital piano with headphones so as not to annoy the neighbours).

Why not try just accepting it instead of fighting it.

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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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10 years 7 months ago #51387 by mrsb04
Replied by mrsb04 on topic Question about an ITP crisis
I'm with Ann on this one. My kitchen cupboards were the cleanest they have ever been when I was on high dose Pred.

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