Need advice where too from here

Patience is part of Rituxin. It can take several weeks after the last treatment before counts can respond to Rituxin. I have had two Rituxin treatments and was discouraged each time as counts were slow to respond. Have had normal counts for 2+ years. I think each Dr. is different when it comes to safe counts for a Splenectomy. Personally I do not feel a Splenectomy is necessary unless it is enlarged or damaged. The Spleen is destroying the Platelets as Antibodies are attaching to the Platelets, the Spleen sees the affected Platelets as a danger to the body so the affected Platelets are destroyed. There are so many possible causes of ITP, the chemicals/preservatives in the food we eat, pollutants in the air we breathe or illness that invade our bodies.

Mary:

Your daughter sure has had a long history with ITP. I'll try to answer your questions.

Childhood ITP isn't all that different from adult ITP. The main difference is that childhood ITP tends to be acute a lot of the time whereas adult ITP isn't. The other difference is children are not treated as much as adults are. There is more 'watch and wait' with children. The treatments are the same for both adults and children.

The fact that the lab is showing 'counts under 10' and not an actual number really doesn't matter much. Counts of 9 and counts of 3 are pretty much the same thing and there is a margin of error of 5k anyway when counts are done. Any count under 10 is a low count.

Yes, a skilled surgeon can perform a splenectomy if a person has low counts. It could be risky, but most people do okay.

Sometimes treatments that once worked do stop working. It's a known fact that there are certain antibodies that affect both destruction and production. The antibodies respond differently to certain treatments. My theory is that a person can develop new antibodies that they didn't have before and therefore, the treatments that they used before do not work now. The immune system is complex and no one really knows why it does what it does.

Rituxan can take time to work....up to 12 weeks after the first infusion. In the meantime, counts will just do what they do. Yes, one of the side effects can be thrombocytopenia, but that is listed with most drugs, even ITP treatments. Platelet transfusions can even cause counts to drop (Post Transfusion Purpura). Most people already have low counts when they have Rituxan, so they can't go much lower at that point.

Tell your daughter to hang in there. She still has other options if Rituxan doesn't work. Having the Indium first is a great idea. It will not predict success, but it can predict if the splenectomy will fail.

Mary:

Doctors respond differently to low counts. Some doctors are okay with allowing patients to go about normal life with counts under 10 and other doctors react and hospitalize the person. Some of it depends on symptoms. When I was at 3, my doctor just told me to go back to work and do what I normally do. I have seen other people told to go to the hospital or go straight home and stay there. An ER doctor will tend to overreact to low counts more than a hematologist would.

Anything could happen with your daughters counts. You can't go by what has happened in the past and yes, her counts could become stable again. For now, just forget about possible splenectomy and focus on what her counts are doing from week to week. Rituxan could still kick in and until that time is up, all you have to do is wait. That part can be hard, so plan some fun things like movies or shopping to take your minds off of things.

I think you are already ahead of the game here. You are taking charge and that is great!

Wow - that is so great that your hospital is willing to test the herbal medication for dangerous ingredients or levels - is that an unusual service? One of my big concerns about that sort of 'alternative' medication is not knowing what you are really getting.
Erica

Here's the latest report on the indium screening test. I had it done in 2008 so will be included in the statistics there. Mine was classed as hepatic sequestration and I opted not to have a splenectomy. I can't say my decision was based on the results of the test because I wasn't intending to have a splenectomy anyway but it stopped my haematologist from including it in the options available to me.

onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.2010.08377.x/full

With regard to the H Pylori test.. it really doesn't seem to be done very often. Worth a try of course but I haven't read about any great successes from eliminating it if it's found.

Mary:

I used to get the same reaction from my doctor when internet research was mentioned. He would blow off everything I said and tell me that you can't believe what you read on the internet. True, but if he would have listened to my sources, he would have found them to be credible. In time, he began to listen and actually admitted that he learned some things.

The appointments don't always verbally go as planned in your head. It's easy to get thrown off base. Don't let this visit discourage you - the next one might go much better.

BTW - His plan of agreeing to the Prednisone taper and waiting a while more for Rituxan are positives. I'm sure you'd like more of a response as far as counts, but that part makes sense. You don't have to wait for the second opinion though. What harm can that do?

hi Mary,

not sure if you've already come across this article: www.cidpusa.org/patient_story9.htm

if not, it should give Niamh and you additional motivation & inspiration to get the H. Pylori testing done at earliest.

let us know if this path leads to positive outcomes!
-Chuck

What a peculiar story!

Ann wrote: What a peculiar story!

I remember her. She used to be on the Forum. When I think of H Pylori success, she is the ONLY person who ever claimed that treating it worked. But I am still sort of on the fence about whether or not she was acute and the antibiotics were coincidence.

Many of the remainder have an improvement in counts" No indication given of how long the positive outcome lasts!

And therein lies the problem - not enough info on long-term follow up, although I have found two articles lately that spouted statistics.

Sandi wrote:

Ann wrote: What a peculiar story!

I remember her.

Oh my goodness. She was real! She was a real drama queen.

Yes, she was real. I remember the story well...very vivid details.

Why didn't you try Romiplostin (Nplate)?

Good luck with the dexamethasone. The idea really is to do it for four days per month for about six months. Some here like it and seemingly have no real side effects while others, me included, hate it.

Self injecting is certainly the policy of my hospital. I know of some other people at different hospitals who also self inject so I presume it's a UK wide thing.

The dexamethasone made me feel drunk and I felt strange and distant and couldn't walk straight for a week after the four days of taking it. I was terrified that it would be a permanent thing. It also took my platelet count to 200 or so for a week and then overnight I crashed down to 2 and had some bleeding, mouth, nose etc. I wouldn't do it again.

Mary - how does she feel with those low counts, besides tired?

Does she have any bleeding issues?

Hi Mary

Thats very disappointing - all the bad side effects but no lasting benefits. There was a girl about Dougie's age on this board a while back who tried that steroid with pretty much the same (lack of) result.

Surprisingly (to me anyway) there were a number of doctors who were advocating splenectomy on effectiveness and risk grounds before using some of the more modern drugs at the conference in York last weekend. Everyone seemed agreed that they would only recommend it for children as a last resort, but for teenagers and adults, the doctors seemed more positive than I had thought they would be.

I hope the exams are going well for Niamh!

Ali

Ali, it's a shame Drew Provan wasn't able to be there as he's always fairly anti-splenectomy and manages to get his view in. It all seemed a bit unbalanced this year with one guy getting his rather old fashioned views in a lot. He talked about having been a doctor for over 50 years and I think it showed.

Ann - I am SO glad you posted that! I was getting worried about the message that was coming across here.

Not your fault Ali - you only said what you heard.

Do you know how it works when she moves to England as in whether England then pays for drugs or does home get billed for them? If it's England then they won't want her on eltrombopag as we can't get it here and if she did get it it's hard to think that there will be a haematologist who has experience with using it.

If she really does have the choice of either then it's up to her whether she likes the idea of daily tablets, bearing in mind that you have to be careful when taking them not to eat any calcium foods either 4 hours before or after it, or weekly injections which she could do herself once stable.

Which area in England is she going to? There are centres of excellence for ITP springing up and it would be good if she could get in with one of those.

itpsupport.org.uk/itpforum/centres.htm

Just wanted to mention, though you probably already know, that immunizations can lower platelet counts. Mine were already low around 20K, then dropped when I got a flu shot. then back up after 1-2 weeks. So now I worry a bit about immunizations.

I preferred taking a pill so chose eltrombopag. I took it in the middle of the night around 2:00-3:00am. It worked for me since I get up in the night anyway. good luck!