Mayo Jacksonville

Background : We discovered my wife had ITP during a routine CBC about 3mo into our first pregnancy. She hovered around 30k, and dipped as low as 20k during the pregnancy. Because a CBC was never performed before the pregnancy, we were unsure if it was strictly due to the pregnancy, or if it was normal for her platelets to be low. During the pregnancy, our approach was to be as minimal as possible, but she did go on prednisone (With a "low" 60mg dosage). The Hematologist tapered her off of prednisone before the delivery.

Delivery went well without any complications and it seemed that the ITP didn't raise any concerns during delivery. She was about 49k right before delivery. Post delivery, her platelets spiked upwards (to about 70k) and then began to dwindle back down (As low as 17k during a very stressful week), she was put back on prednisone and a week later, they were back up to about 65k. Over the next couple of weeks, her numbers dropped back down and hover around 30k to 45k regardless of the prednisone dosage. She told the dr. that she really didnt want to be on prednisone, because of the side effects, and they have been tapering her down.

We feel as if we have been getting the run around from the doctors in our area, as she has been to three different hematologists. They all seem to scratch their heads, and look at the clipboard and then jump to the worst possible situation, even though her symptoms seem very minimal. She scheduled an appointment with Mayo in Jacksonville and will be going there shortly.

Question: Does anyone have experience with the Jacksonville Mayo? We have high hopes that, because of their reputation and network, they will be able to offer better options and have more experience with ITP than what we have seen. At the same time, we want to be realistic and we know that ITP is not a one fix type issue.

Thank you in advance

Hi J - welcome!

I'm glad that your wife didn't have any issues during pregnancy and delivery. Seems like you got through the toughest part.

I'm a bit confused. You said that you want to treat conservatively and it looks like you have been. 60 mg's of Prednisone is not a low dose though. I'm not sure if you were kidding about that or not. Anyway, you want another opinion for what reason? More treatment options? You've seen three doctors and all they offered was Prednisone?

Mayo does have a great reputation but they will probably not offer anything that you couldn't get from a good Hematologist. Some Hemo's are not very familiar with ITP and will not offer all of the options, so some people have to doctor shop until they find one who does.

The goal for ITP is to try to achieve remission, but sometimes people have to settle for finding the best way to manage it (keep counts above 30k). That can take time. You're right, there is no quick fix or cure. There are more options than Prednisone though.

Thank you! We didnt think that 60mg was a low dose either, but it was a fight to keep it below 100mg. Each doctor was saying that 60mg is really a low doseage and they wanted it to be higher and that she should be happy it's as low as 60mgs. We have gotten a couple different options from the Hemos here in town, but their knee jerk reaction is a splenectomy. They have tended to work from the most invasive to the least invasive...we would like to go the other way.

I guess my main point that I was trying to point out is that we have really lost trust in the expertise of the doctors here, and that we feel like just another appointment in their busy day. Our hope is that the Mayo doctors will have a little more insight and have more respect for the situation.

On the flip side, if I were to get a lot of responses saying that Mayo in Jacksonville was the hot spot for a splenectomy, then we would probably just stay with our current situation.

Your instincts are correct. You don't want to start with the most invasive option. Splenectomy is becoming an old school treatment and isn't done much any more. It does not always work and can cause problems down the line.

60 mg's is a high dose of Prednisone. That is the dose that most people start with. The dose can be based on weight and I've seen others start at 100 mg's, but it is rare. Prednisone is a torture drug and although it is usually used first, it is not often successful for remission. Some doctors like to use it over and over and the patient never really gets anywhere. Sometimes the side effects are not worth it.

If you have doctors who are only pushing steroids or splenectomy, then yes, run away and get another opinion. Mayo is great, but keep your expectations realistic. Do not expect a reason for the ITP and do not expect a cure. If they offer you other options and hopes for remission or the ability to manage ITP, you are doing great!

It would be a good idea to research the treatments so you can be a bit ahead when they discuss them with you. The more you know, the more you will be able to make suggestions and participate in the discussion.

Common treatments:

Promacta
N-Plate
Rituxan
Decadron
Win-Rho
Cell-Cept
Imuran

Some of those are better than others.

J have a look at this it's written by specialist nurses as an educational tool for nurses who have no knowledge of ITP.


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

That is a big help. Of all of those common treatments that you listed, we had only heard mention of Win-Rho from our current hemo, so that will give us some good research points going onward to Mayo.

Win-Rho is one of the oldest and least used these days.

J you're welcome. I've been a renal specialist nurse for years.
ITP was way out of my comfort zone when I was first diagnosed nearly 2 years ago. I found the booklet a brilliant starting place.
One thing it doesn't mention as far as I remember is an indium scan which is definitely worth requesting before even considering a splenectomy

Here is a brief summary of the treatments:

N-Plate - Weekly injection. Promotes platelet production. High success rate. Dose should be adjusted to maintain counts around 50k. Remissions can occur. Few side effects. Expensive.

Promacta - Daily pill. Promotes platelet production. High success rate. Dose should be adjusted to maintain counts around 50k. Remissions can occur. Few side effects. Expensive.

Rituxan - Four weekly infusions that take about 6 hours each. Inhibits platelet destruction. Remissions can occur lasting an average of 12 months. Side effects are rare, but can be serious. Expensive.

Decadron - Four day treatment, steroid stronger than Prednisone. Success rate varies, but generally counts drop once treatment is stopped. Side effects can be worse than Prednisone but shorter in duration. Not expensive.

Win-Rho - An hour long IV infusion. Patient should be monitored for hours afterwards. Few side effects but can be serious if they occur. Counts can last weeks or months, or patient may not respond at all. Success rate varies. Not too expensive if covered by insurance.

CellCept - Immunosuppressant, daily pill. Few short term side effects but long term side effects can be serious. Not expensive. Success rate varies. Usually a last resort.

Imuran - Same as CellCept.

IVIG - Infusion used for rescue. Results do not usually last more than days or weeks. Success varies. Few side effects, most common is aseptic meningitis.

J.Grass - if only those doctors who feel 60mg of prednisone is a low dose would have to take it for a month they would change their tune!

pdsa.org/treatments.html
That's the PDSAs treatment page.

I did have one IV of WinRho when I crashed in 2002 and it put me in a "remission" - decent counts, not in the normal range, and I haven't had to treat since then [(knock on wood). What us old-timers strive for, decent counts instead of going for the gold (a normal high count).

I saw a specialist back in 1990, head of the hematology dept at the medical center/university - he told me "you WILL have a splenectomy", so far my spleen is still in the same location it was when I was born.

Did I miss how long your wife has had ITP?

mrsb the indium scan is not offered in the US, also if it would show destruction is in the spleen that doesn't mean having a splenectomy will do the trick and counts will go up and stay there in the normal range.

I can't speak for the prednisone dosage personally, but from what I have experienced second hand, I agree with you. Even if the dr.s spouses took 60mg for a month, I believe that would be enough for them to change their tune as well!

We are not sure how long she has had it, since we never had a baseline before the pregnancy. Nothing has changed as far as symptoms, she has always been easily bruised and we are very active, so the occasional bruise on her legs didn't alarm us. Since the initial CBC, revealing the low platelets, it has been about 8mo. If she didn't have the CBC during pregnancy, we would probably be going about our lives as normal, without even knowing.

Thank you for all the input, it is reassuring to know we are not alone in this.

J.Grass wrote: If she didn't have the CBC during pregnancy, we would probably be going about our lives as normal, without even knowing.

Exactly. So now that you know, you can also understand why there is no dire emergency to do anything in haste. If symptoms are minimal, take your time and make informed decisions. Some doctors will throw the kitchen sink at you for no real reason, and as you found out, once the treatments start, it opens an ugly can of worms (side effects). I'm not saying don't treat, I'm saying don't rush into anything.

My husband could tell some stories about me on Prednisone too. I tried to keep calm, but there were times when the mood swings won. You can only control it to a point. I had to control it all day at work and as much as possible with my kids, so he got to see most of it. Some day it will be funny, but it's not so funny when you're going through it.

Melinda
Being in the UK means I don't know everything that is available in the US. I am absolutely staggered that a country many times the size of the UK fails to offer such a simple procedure.
I am fully aware that having a splenectomy doesn't carry any guarantees which is why I'm not parting with mine.
However if an indium scan showed hepatic as well as splenic involvement of platelet destruction then it would give one extremely good grounds to refuse a splenectomy.

So it has been at least 8 months that you know of - I think the experts would probably say it's too soon to think of a splenectomy anyway. And at least it doesn't sound like the hematologists are doing what Sandi mentioned, "throw the kitchen sink at you.." - there have been people who come here who were diagnosed for a month or two or less and have had almost every treatment in the book already.

I love it J.Grass, have the doctors spouses take 60mg of prednisone for a month and see if they change their tune. You have a good sense of humor too [even though we do mean it about them or their spouse taking that much prednisone!].

We moved to Tokyo a couple months after my diagnosis and while I was on 60mg - stories, yeah, we all have them! I did refuse prednisone when my count crashed in 2002 thanks to a tetanus booster - told my hematologist I would not look like the Pillsbury Dough Boy for our sons wedding and the color of my dress would go with the color of bruises - I meant it too, would have rather had bruises than look like the Pillsbury Dough Boy. That's when I had WinRho instead.

It cannot hurt at all to see someone at Mayo Jacksonville - please keep us posted ok?!

Mrs. B:

They don't have the Indium here in the US because they don't believe that it's all that useful. The test only saves a spleen if it shows hepatic sequestration, so I guess it's cheaper to just let the patient be the guinea pig.

Interesting how different countries have differing perspectives on tests & treatment

I agree, and tend to lean towards the UK methods.

Does every ITPer undergo an indium scan before a splenectomy in the UK?

J... The Mayo might offer exceptional care of ITP or any other condition.
But, IMO... It's best to gather all the information you and your wife can comprehend before you arrive at an appointment. You'll quickly be able to get a feel for how good that MD's care will be and how willing he/she is to cooperate with her wants and needs instead of dictating to her.

Medicine is as much art as science, so there is wide variation among MDs on the approach to ITP treatment. Also, a lot of ignorance. When you and your wife become secure about your own ITP knowledge, you can more easily make the hard decisions about treatment. If any MD refuses to bend on the subject of splenectomy, be assured that there are others who have more modern approaches.

Melinda, i don't think so......you would generally get it if you asked or if you had a switched on dr

Alison. I think you may well be correct. I asked for one after discovering about it here

www.itpsupport.org.uk/splenectomy.htm .

As soon as I asked for one I was granted one.

It showed only splenic destruction but I am not having a splenectomy. My spleen is perfectly healthy & doing its job properly.

Did your wife ever go to Mayo? I live just outside of Jacksonville and have an appointment there April 14 with Dr. Tun. Was wondering if you went, how you feel it went?

Sheri,

She did end up going and unfortunately the trip didnt shine any new line on the subject. While she was there, she had a blood test that showed her platelets had dropped down to 22k, (I think they were in the 30's the week before) and the Dr. that she saw there tended to agree with the prednisone treatment that she was on at home with her own hemato.

A little follow up - we have been renovating a rental property, and the plan was to contract out all the work so we wouldnt have to personally work on this one. Well, that didnt really turn out as planned so we ended up having to do a majority of the work ourselves in order to meet the deadlines set by the lenders...which made stress levels pretty high. not sure if it is directly correlated to the platelets, but she noticed some petechiae on her legs and went in a couple days early than her scheduled check up with her hemato. Turns out they had dropped to 17k and he prescribed a corticosteroid that he said was stronger than prednisone but only needed four days of treatment and required no tapering.

She went to her original appointment (which was day three of that treatment) and her platelets were at 98k..WOAH!

Two days after that corticosteroid was done, she CRASHED. said that she felt awful and her body ached and she had chills but that it felt different in some way from being sick. we werent sure if it was the stress of the week before, or lack of sleep or if it was connected to the prescription. after a long nights sleep, she seemed to be doing much better.

She has also stopped breastfeeding and we are hoping with the lack of hormones from breastfeeding and a less stressful environment will bring her numbers back up to a maintainable level, but I will keep you all posted.

Sheri, coming back to your question. It definitely wont hurt to go see them at Mayo, and hopefully they will have more to offer than they did for my wife, as each situation is different.

Your wife probably took Decadron. It is a steroid that is stronger than Prednisone and the protocol is a 4 day treatment. It is typical for counts to crash a few days after the treatment. Very few people sustain counts after the treatment. I couldn't tell you why it is used since it rarely works to sustain counts. The side effects your wife experienced are normal. Decadron withdrawal can be horrible and yes, she would feel awful for a few days.

I believe that stress can cause exacerbation of autoimmune disorders at times. Stress can wreak havoc on the body and cause many problems. Stress is hard to avoid though.

I once saw an ITP Specialist too and after an entire day of traveling, waiting, and labs, her advice was to continue with Prednisone as needed. I know how you feel, but there aren't any magic answers. I still think you need another doctor to manage this. Prednisone will get old fast and your current doctor didn't offer you much.

Thanks for your response about Mayo. I'm sorry your wife had such a hard time after the 4 day treatment. I wish her well.

Hi,
I've had Itp for 13 years now and just turned 30. I live in Florida I have been to Mayo, moffit and Shands and honestly only learned that I needed to never take another steroid again because I had deteriation in my neck at 20 which my Drs failed to tell me. They pretty much just go down the list of every treatment and help you determine which is best, good hematologist do this too but they are so hard to find. Good luck to you guys! oh and tell your wife to expect to give half her blood volume lol I think I remember them taking about 15 tubes