On prednisone and platelets still in the gutter

My sister is batteling ITP right now. Was hospitalized and is now taking prednisone. Why isn't prednisone working? she's had to have 2 ivig infusions since being discharged from the hospital. She can't sleep due to prednisone but it's not raising her platelets. They are at a 12. She is 5 days post ivig infusion and will have another tomorrow. What should we be asking the doc?

Prednisone does not work for some people. What dose is she on? Sometimes if it's not working, you should talk to the doctor about tapering off since there is no point taking it.

It can take time for most people to find a treatment that works. There is no quick fix and it requires patience. There are other options such as Rituxan, Promacta, and N-Plate which have less side effects and have better success rates. They are expensive though so most doctors try the cheaper treatments first. IVIG is pretty temporary and doesn't last long so if she keeps getting that, it's likely counts will keep dropping after it wears off.

I was in the hpspital with my first ITP episode. I had 3 Ivigs and some other things done. Nothing happened for 9 days. My platelets stayed at 0. Then on day 10 the platelets shot up to 12,000, then 24,000. And I started making 1,000 platelets an hour until I reached about 360,000 where I have been for two years and where I always was before the ITP. It hasn't been that long.

How long has she been on the steroid? It can take a few weeks to work. But failing that get off it and try something else. It doesn't look like the IVIG is working well either.

It depends where you are in the world as to what they would try next. I'm guessing you're not in the UK (or you'd have spelt hospitalised with an 's'.. LOL) but in UK it'd probably be either an immunosuppressant like mycophenolate or rituximab. In the US they often go straight to Promacta or Nplate.

Great to hear sucess stories. Thank you. We are in the US. She was in the hospital about 3 1/2 weeks ago. She had 2 ivig in the hospital and 2 since she's been out. Every time she has one her platelets rebound to about 30-50 and then go down again to 10-12 within a few days. How long should she stay on prednisone before she should ask for something else? Her doctor is not very reassuring. She says things like if we don't get these platelets under control it's going to be a bad thing. Instead of saying if pednisone doesn't get these platelets up in x days or weeks we are going to do _______. It's just frustrating because I think her doc is terrible. She has Kaiser which means it would take an act of congress to get a second opinion.

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

This might be helpful..written by nurses for nurses but quite an easy read

I think I would try to get that act of Congress. Of course it's better if platelet counts go up, but not responding to Prednisone or IVIG is not the worst thing. It happens. Neither of those usually do much in the long run. This is where patients have to sometimes advocate for themselves and make suggestions. I know that's hard at first when you don't know much and feel intimidated, but it's either that or stay on this path.

It can take many patients 6 to 12 months to find a treatment that works and has the fewest side effects. I know that seems like forever, but there is hope. We've all been there. In the meantime, remember that symptoms matter more than the count. If your sister doesn't have many symptoms at 12k, she's doing okay. A count of 30k is considered safe, and normal counts are not needed.

My thoughts and prayers are with you all. If I were your sister I would go another route. There are alot of different treatment options and it sounds like the steriods and IVIG are not going to be her friend. IVIG is just a bandaid drug along with the prednisone.

I go tomorrow for IVIG but it's just to push my count up so I can come off of Promacta and next week I start on Rituxan. I'm having a hard time with treatment right now..and I've had this for 21 years.

Tell her to try and try again Wishing you all the best and lots of healing prayers.

Andie it would not take an act of congress to get another opinion - all she has to do is call and make an appointment with another hematologist.

Unfortunately with Kaiser it is not that easy. You have to request a second opinion and then your reason for wanting a second opinion is reviewed and then submitted to an approval committee. If they agree you should have a second opinion they will have that office call you to set up an appointment. You can't just call and make an appointment, unfortunately.

I'm pretty sure that Melinda has Kaiser and has not had that problem at all. She likes it.

Sorry to speak for you, Melinda, but I know you're not usually here every day. I hope I got it right.

Is she in the HMO?

She doesn't really need a 2nd opinion does she - she has been diagnosed with ITP, that she isn't disputing is she? She doesn't like her doctor and wants another one right?

From their website, under 'Why Choose Kaiser Permanente', click on 'Your Choice of Top Doctors' [don't need to sign in to see it]:
With Kaiser Permanente*
Get to know your doctor ahead of time. Browse our doctor bios on kp.org and choose one based on what’s important to you. You can switch doctors at any time.

Yes she just wants a different doctor, she's not disputing her diagnosis. I had to do that when I had kaiser when I wanted to see another rheumatologist,but this was several years ago. It's worth a shot. Thank you!

How is your sister doing Andie?

Thanks for asking. Her platlets are at 17,000 after her infusion of ivig so they are giving her 2 infusions this week. She's had two severe nosebleeds. One a few days ago,where bleeding lasted about 30 minutes, and one today that lasted for 40 and ended with a trip to the ER. Her doc told her to go to the ER after 10 min of uncontrolled bleeding after the first bleed,so she did. They didn't do anything except draw blood to check her counts. It was a 3 hour trip. Do they have her go to the ER just to make sure bleeding stops? It stopped on its own after 40 minutes. This is very concerning to her family. Especially her kids. They are very worried about their mom. She is also worried about herself and keeps talking about people that have died of this disease. I'm try to encourage her and tell her that dying from this is very rare but I'm not sure it helps. Honestly I thought her treatment would have stabilized by now. She goes to her hematologist again next week. Until then she's just continuing to do what she has been. Say a prayer for her, if you wouldn't mind. Thank you!

I don't think that IVIG is doing much for her. Usually if a treatment doesn't raise counts, they move on to something else. It can take time to find the treatment that works, but most do in time.

Your sister should join the Forum. Once a person becomes educated and sees what others have gone through, they relax a bit. I honestly never feared dying from ITP and I had counts under 5k quite a few times.

She may need to see an ENT and have her nose cauterized. Many times, ITP is not the cause of the nose bleed but it can make bleeding worse if it does bleed.

My hematologist told me back in 2002 that she never had a patient go into remission with IVIg. This was before I started with the HMO - a tetanus booster had sent my count to the gutter and I refused prednisone so I would not look like the Pillsbury Doughboy for our son's wedding and instead had WinRho.

Your sister is #1 - it is her body

This is new, it is scary - let her know it would be scary to you if you had ITP - what is going through her head is what a lot of us have had go through our heads - I never thought I'd die from ITP but having counts go here there & everywhere is scary.

I'm with Sandi - tell her to join us here, and you stay too!

[hope you got my email]

Didn't get an email Melinda.

What a wonderful sister you are. Yes, if your sister's hematologist is not speaking with her about alternate treatments than prednisone and she has not responded at all in a couple of weeks -- she should try to find a new doctor. While she waits for that, she should advocate for herself to the doctor and ask for second line treatment options.

As others mentioned, even if she looks at some of the threads on this site and gains some knowledge -- she might feel better. It is scary as heck at first (and sometimes later too) -- hearing other people's stories always helps me put my own treatment plan, failed treatments and single digit counts in perspective.

Prednisone did nothing for my ITP (a variety of dosages ranging from 100 mg to 40 mg) solo and in combination with other treatments . It did however mess with my sleep, my mood, my skin, my hair, my weight and was painful to taper off of. Unfortunately it is the automatic first line treatment.

Wishing your sister the best.