QUESTIONS AND ANSWERS - NEED INPUT!

Due to the fact that many times we cannot get reliable information about certain aspects of ITP, I am going to submit some questions to the PDSA Medical Advisors. This will be used as a reference whenever we cannot provide credible, cited responses to members here. Answers will be current, and they will be accurate.

If any of you have questions, please post them and I will consider them for submission. I am hoping to have the list ready by Thursday, so please have questions posted by Wednesday, 6 pm (EST).

No one?

Sandi, this is a great idea. Can you give us about a week to think about it?

Sandi wrote: No one?

I don't know how many noticed this Sandi - I didn't until now. Maybe it needs a Subject line in flashing letters

There are so many things stickied it probably wouldn't be seen if stickied. Not sure how to bring it to everyone's attention.

It is a good idea! I don't have any questions though, sorry.

Tamar:

Okay, I will extend the deadline to next Monday at 6 pm (EST). Is that better?

Melinda:

I know, you're right. I look at them all the time to see if I can scale it down....never get anywhere though.

Sandy,

1) Last time my platelets crashed (to "0"), I noticed that even when the IVIG didn't help the first week and half (and, while in and out of hospital), that my symptoms started to subside on their own. I still had low platelets at the time (@ 12-15 after two weeks); the bruising was getting better and the blood blisters were going away. Even the doctor at USC was amazed. But, I was following the diet recommended on this site during this time. I had started the Decadron pulses at the end of two weeks. Does this happen very often? I didn't take anything but Prednisone w/IVIG and Decadron--no other meds.

2) Wanted to know if the doctors every link an ITP relapse to running long, vigorous marathons? I've noticed at the conference and on this site that some people seem to get low platelets from running too hard (over 3-4 miles like maybe 5 days a week). I met a young man that this seemed to happen to. Once he was treated and got the platelets back up, he was good for a few years. Just was wondering.

Thanks Sandy--I may think of some more later on.

Dee Dee:

The questions will be general and not about someone's specific case of ITP, but I will try to make your questions generic.

I saw this notice, but can't really think of a pertinent question. Mostly a case of not knowing what I don't know.

There is one subject I was formerly interested in, but not as much now that NPlate treatment is working.

When multiple doctors were trying to push me into splenectomy, I researched like mad for reasons not to be pushed. I wanted statistical information about the success rate of removals done at an advanced age. I'm 64 and couldn't find studies designed for my age demographic. Even the splenectomy entry in this site's treatment section reports on one lone 2001 study aimed at age as a predictor "...the only positive predictive factor for the long-term response to splenectomy was age <40 years."
There are a lot of people besides me who sure wouldn't be very comforted by that statement.

Since there are still ITP experts who state that splenectomy is the best shot at remission, there ought to be studies to back it up.

Sandy,
Sorry, I meant to make it more generic. More of a general question. Thanks!

What constitutes a reaction to a treatment that indicates you should never have that treatment again? (after the sixth time I had Rituxan I suddenly had head to toe hives but my hema thought I could go ahead and have more Rituxan - but one of the ITP experts was like no way). Maybe for each different treatment.

Good questions, ladies!

Q1: Is there any UNPUBLISHED work in the pipeline that one should be aware of?
1a) New treatments for ITP?
1b) New research into causes of ITP?

Q2: Given at least seven good studies with total approx. 200 subjects (half controls), consistently showing the effectiveness of low dose (100 mg X 4 weeks) rituximab in the treatment of ITP:
2a) Is anyone working on a meta-analysis of the data of these studies?
2b) Is there talk of recommending lose dose rituximab as a treatment option?
2c) Are there any other lower dose dosing schemes being considered?

Q3: Some patients on this website have benefited greatly from the eradication of h. pylori
3a) Should h. pylori be included in the initial workup?
3b) Should h. pylori be tested for at any point?

Q4: Chronic mycoplasma pneumoniae has been associated anecdotally with ITP.
4a) Is there any further research contemplated for this possible association?
4b) Is there any testing and/or treatment that is advised at any point?

Q5: More generally, regarding infections that may cause low platelets:
5a) Which tests for infection should be run initially?
5b) Do your patients ever, when treated with antibiotics (for some unrelated infection) have their platelets suddenly respond positively to the antibiotics, (absent a known infectious cause of ITP)?

Q6: Given the risk, cost and/or extreme nature of treatments such as rituximab, eltrombopag or splenectomy:
6a) Is there a second tier of testing to be done of less common infectious causes of ITP?
6b) Would it be worth a prior trial treatment with antibiotics?

Q7: n-acetyl glucosamine has been used but not well studied for the treatment of other autoimmune disorders (arthritis, multiple sclerosis, IBS) but not ITP (although it is used to prevent clumping in vitro):
7a) Are there any further studies being done?
7b) Is there any indication that n-acetyl glucosamine might help with ITP?

Q8: Given that different patients respond differently to the various treatments:
8a) How many distinct cause or types of ITP do you think might exist?
8b) Are there any indications that one treatment might be more or less effective given a prior treatment's effectiveness or lack thereof?

Q9: The use of splenectomy is declining, and some doctors avoid them completely:
9a) Do you ever do a splenectomy on a healthy spleen?
9b) If so, what are your criteria?
9c) Should the indium-labeled platelet screening test be performed prior to splenectomy?

Q10: Some research indicates that Rituxan might be more effective when combined with high dose dexamethasone.
10a) What has been your experience?
10b) Do you use the combination?

Q11: Some doctors use dexamethasone and others use prednisone:
11a) Is there any real difference in effectiveness or harshness (at equivalent strengths of dosing)?
11b) Is the difference in the mineral-corticoid profile enough to cause side effects at low or at high doses?
11c) Do you prefer HDD or continuous dosing with prednisone, and why?
11d) What is your tapering scheme for glucocorticoids?

Q12: Repeatedly we hear on this website of doctors who are not using "best practises" in treating ITP:
12a) Should treatment of ITP require special certification?
12b) Is the treatment of ITP included in continuing education?
12c) Is there a single source of up-to-date information for physicians, covering all that is involved in treating ITP?

13: Did I leave anything out?

Recently there was an article about allergies in youth -

A. Has there been any studies in adults with ITP and allergies (enviromental/food/drug)
(how many of us here have some form of allergies? it would be intereresting to know the percentage)

B. How many had allergies prior to being diagnosed verses after being diagnosed with ITP?

Rob! LOL! I wondered where you were on here, but you sure made up for it!

I don't want to pound them with too many questions, so I may have to dwindle them down a bit.

I can tell you this about two of the questions:

#9 Most people with ITP do have a healthy spleen, so in all likelihood, the answer to that would be 'yes'. I'm not sure if I will get answers from just one of them, or multiple answers from a few, but I'm pretty sure the only criteria would be 'chronic ITP' as that is always the reason splenectomies are performed. That answer is kind of hypothetical because we could ask five different doctors and get five different answers based on their patients, preferences and experience. I would have thought that they all agreed on everything since they research and publish together, but Ann discovered that they don't when she went to a conference not too long ago. One of the top ITP docs still recommends splenectomy after one year. A few others do not.

#12 I wish doctors had to be certified to treat ITP since it's been so frustrating around here lately. However, what makes ITP any different than any other illness people are faced with? I know plenty of people with other health issues that are just as frustrated by doctors who lack knowledge. I think if doctors were required to be certified to treat ITP, they would not bother because they have few patients and people with ITP would be left with no one to see. I'm pretty sure that doctors are required to take continuing education classes, attend conferences and read the literature, but the subject matter is up to them. I know that my Hemo concentrates on several different types of cancer and that is all he has time for.

#9 I meant do they all do splenectomies for ITP or only for ruptured spleen or other such problems. Is there anyone in the US that you know of who doesn't ever do splenectomies for ITP?

By all means, whittle away!

Please could you ask something about tiredness and fatigue with ITP as many people seem to experience myself included yest many specialists do not see a link?

Also is there any relation/research re:vitamin b12 deficiency and ITP?

BTW love this forum.

Exercise and ITP. They say if you use weights it breaks down the muscle tissue and then rebuilds the muscle. If platelets are less than 100,000 but more than 30,000 is this a concern?

please include something about tiredness..

9c...I think so Rob

I had a question in mine than I saw Rob's questions! My bet it only took him a few minutes to come up with all those questions.


OK I have one! if it has been asked than fine! I maybe the only one who wants this answer.

What is the mortality rate for ITP (without any comorbidities) ??

Holy cow rob... Great set of questions. Will look and add if I can yet.

Questions have been sent. I will let you all know when I get the answers.

Regarding the question about vitamin B12 deficiency and ITP - I had used Best Doctors to review my medical records and give me recommendations about my ITP treatment since I didn't trust that my hematologist was very experienced (due to several issues) and they sent me an article about a link between a copper deficiency and low platelets found in some ITP patients. I had all my vitamin and mineral levels tested and my levels were all good (so no quick fix by getting more copper into my system to eliminate the ITP). They also had me get my Iron levels checked, which also were normal. It certainly can't hurt to get all of your vitamin/mineral levels tested with a simple blood test to rule out any other possible causes. My B12 level was actually pretty high when tested as I was taking supplements and didn't realize my multi-vitamin had plenty of B12 in it, so I was over-doing it. Note that the "expert physician" who provided me with much info and recommendations from Best Doctors was head of hematology at Sloan-Kettering in NY. It was very helpful to engage them in the review and they provided me with much more information on ITP than my hematologist ever did! Luckily for me it was a free benefit offered from my work place as you would normally have to pay Best Doctors to do it. I hope this helps!

I have a question - not for PDA, but for anyone who can help answer please....
TRAVELLING: I have to start travelling for work via airplane to other states (at least I don't have to fly out of the country) and have not had to travel since I was diagnosed last August with ITP. Now that the Promacta is working for the past month and no more visits to the hospital for transfusions and no more IV treatments (since Retuxin didn't work for me), my director thinks all is good and I can go back to being the Project Manager who he can give the big, complex, projects to - which means travelling as needed, plus he nominated me for a class that takes place once a month in Boston, MA starting in May! Anyway, besides making sure to take all my meds on time and trying to get enough rest and eating healthy, are there any other things I should do when I travel or things to watch out for? Like, should I find out the closest hematologist or hospital to the area I will be travelling to, just in case my platelets crash? I'm a bit nervous to be travelling alone with this condition, even though the Promacta has been working for me and keeping my counts in normal range for the past month....

I appreciate any tips or pointers from others who have travelled with this disease. Many thanks in advance.

Spinfam,
When I was first traveling with ITP, I did the following:
1. Looked up the closest hospital and urgent care to where I would be
2. Got and wore a medic alert bracelet
3. Carried a letter from my hematologist that stated my condition and that I responded well to 75 mcg/kg of WinRho, which he suggested I be given if my platelet count fell below 15,000. He also provided his contact information in the letter.

I never needed to use any of them, but it made me feel better to have them.

I would be interested to know what others feel about the role specific food play in ITP and platelet counts. My doctor does not feel the food I eat helps or hurts. Just wondering if others thought the same.

Have a look in the Natural Treatments Forum, that's where it will have been discussed. Personally I don't believe anything I've eaten or drunk, including alcohol, has had any effect on my platelets. Others feel differently.

I don't believe that a person can, for example, eat something like blueberries and get a rise in counts. Or, eat cake and have a drop in counts. I don't think it is the day to day foods that make a difference.

I do believe though that a person might try something like a gluten free diet and after a few months, if the person had a sensitivity, they might improve overall health which could help an autoimmune disorder.

Spinfam when we moved to Tokyo shortly after diagnosis and I was on 60mg of prednisone we first stopped in Maui for a few days before flying on to Tokyo. My MD had given me an order for a CBC to take with me so I could get a count done while there [and told me what to do w/pred depending on the count] - once I got to Maui I looked up clinics and found one that would do the CBC and give me results right away. This kept me out of the ED which as everyone knows can take hours & hours.

Spinfam, if you respond to prednisone then consider traveling with an emergency supply. I did that and I never had to use it for platelets but once it came in handy when I broke out in hives from getting too much sun.
Erica