Is there a bottom line number for treatment?

My 19 year old daughter is newly diagnosed with ITP. She is also anemic, and her only symptoms are easy bruising, and a tiny bit of petechiae on her inner arms, although she does have crazy heavy menstrual cycles. I'm not sure if that's considered a symptom?
Her platelet numbers have been:
8/10/17 46,000
9/20/17 2,000
10/10/17 12,000
On Tuesday the hematologist said that everything could be fine at 12,000 and encouraged us to stick with watchful waiting, and to do labs that day and then once a month and see him in six months. Twenty minutes later we got a call from the nurse that said the platelets from the draw that day were 5,000 and that the doc said we can no longer afford to wait. They are planning Rituxan infusion as soon as the insurance approves it, which the doc says will not be a problem with the number at 5,000. Prednisone is contraindicated because my daughter is extremely overweight. Honestly, Rituxan sounds pretty scary, and I'm wondering if she should do it since she's not really symptomatic? I'm on board with treating if there are symptoms, but is there a bottom number at which it should be treated even if she's relatively asymptomatic?

AsMom wrote: ... Honestly, Rituxan sounds pretty scary, and I'm wondering if she should do it since she's not really symptomatic? I'm on board with treating if there are symptoms, but is there a bottom number at which it should be treated even if she's relatively asymptomatic?

Yes, 20 to 30 is the commonly accepted range of when medical treatments can start regardless of symptoms.

IMHO, in this case, I'd try to talk your doctor into going directly to Promacta (or Nplate) first. Very little risk and a definite remission possibility - although not that often. 10 to 20% maybe. IMHO again, the eventual dose required can sometimes be instructive to further treatments.

No, there isn't any one number that dictates when treatment should start. A decision can be made based on symptoms. I would consider a heavy period to be a problem though and that could be why she is anemic. That can also be managed with a drug called Provera which will slow or stop the bleeding. I've used it in a pinch. It won't raise the counts and is a birth control medication.

However, I think it's odd that he would want to go with Rituxan if you 'can't afford to wait'. Rituxan isn't known to work quickly and can take 4 to 12 weeks after the first treatment to kick in. Add that to the time it will take to get approved and it could be a while before counts go up. Rituxan only has a 40% to 50% success rate so it may not even work. There are many people who are not comfortable with Rituxan and in that case, they try another treatment option. She could try IVIG which works quickly but doesn't usually last long. Promacta and N-Plate are two other options.

You could also try a low dose of Prednisone which may not cause weight gain. 20 mg's might be enough to bump her counts up some without too many side effects.

I don't completely understand the urgency either, since she doesn't have many symptoms. Wouldn't she be having nosebleeds or bleeding gums, or massive bruising if the problem was acute?
We are having trouble finding a female ob/gyn (my dd's preference) who is accepting new patients, and it seems that all of the ob/gyns are booking well out into December, so the "monthly menace" isn't something that will probably end soon.

My Hemo is the one who actually prescribed the Provera.

I'm not saying that you shouldn't treat her, that is up to you. However, Rituxan isn't the right treatment if the doctor wants her counts up in a timely manner. Counts above 20k to 30k are considered to be safe. What were her counts when her period got heavy? Have they checked her thyroid?

The hemo is pretty dismissive about the heavy periods and just says she needs to see an ob/gyn. He's not really helpful at all. The thyroid numbers seem fine in regular labs. The hemo doc is not my favorite, but I'm having trouble finding anyone else who can see her in a timely way. UC Davis would be a good place to go, but they said they are booking out into mid-late December, and the hemo doc here seems to think that 5,000 is urgent enough that we should start treatment asap. I feel like it was kind of a fluke that we discovered the platelet thing at all, and maybe we should just wait, in light of the lack of urgent symptoms.

Her heavy periods could be the result of two things. 1) Her low counts or 2) a GYN problem. If it is due to her low counts, the doctor should not be dismissing that and there won't be anything that the GYN could do about it other than BC meds to slow the flow. I guess he is dismissing it because he never had to go through it. I have and it's miserable, not to mention that it could be causing anemia. I think it could possibly be an urgent symptom but like I said, Rituxan isn't going to help quickly and it's a fairly toxic way to go for a first treatment.

Sorry to here you are having difficulties with your HEM guy. I would, if possible, look for someone who is more open to your concerns. I was diagnosed a month ago and on the fourth HEM doc found one I can deal with and trust. Find one that is more focused on the symptoms not the numbers. Numbers vary patient to patient. I came in with a platelet of 1K and had some minor petechia. Some start bleeding at 20K. Everyone is different in that regard.
If you are having trouble getting the HEM guy to prescribe the BC Sandi suggested, you might try an urgent clinic or your PCP. Again, treat the symptoms not the number.
As far as starting with Rituxan, It just makes no since. The best result would be a couple weeks out and that is not what the current HEM guy is wanting. My suggestion, and it worked for me to get my counts up in 24-48 hours, would be IVIG. IT is not long lasting but it will get the bump that is wanted while you wait for the long acting medicine of choice to kick in.

I strongly suggest trying to start either Nplate or Promacta. Takes a week or two to kick in fully but its longer lasting and less toxic than the other recommended medications. I am currently on Nplate, a once a week injection based on body weight, and it is slowly bumping me up. Takes a little time but it is titrated to keep numbers at a recommended level.

I said no to RITUXAN do to the side effects and toxicity level. Side Effects:Low rate, usually mild-to-moderate first-infusion fever/chills, rash, or scratchiness in throat. More severe reactions include serum sickness and (very rarely) bronchospasm, anaphylaxis, pulmonary embolism, retinal artery thrombosis, infection, and development of fulminant hepatitis via reactivation of hepatitis B. Rare cases of progressive multifocal leukoencephalopathy.

Take a look at this introduction article and it will explain most everything.
www.dropbox.com/s/a3vml426r2ybuec/International%20consensus%20report%20on%20the%20investigation%20and%20management%20of%20primary.pdf?dl=0

Let me know if you need any more information.

This link is easier if you don't do drop box www.bloodjournal.org/content/115/2/168
Below is another link. It's very informative and not too technical despite being written for health professionals
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

AsMom wrote: The hemo is pretty dismissive about the heavy periods and just says she needs to see an ob/gyn. He's not really helpful at all. The thyroid numbers seem fine in regular labs. The hemo doc is not my favorite, but I'm having trouble finding anyone else who can see her in a timely way. UC Davis would be a good place to go, but they said they are booking out into mid-late December, and the hemo doc here seems to think that 5,000 is urgent enough that we should start treatment asap. I feel like it was kind of a fluke that we discovered the platelet thing at all, and maybe we should just wait, in light of the lack of urgent symptoms.

Hang in there! That is definitely not a good sign with him being so dismissive of the heavy periods. My heavy periods are my main problem with my ITP overall. Some people get nosebleeds or gum bleeding, but others don't. There is no one symptom across the board.

I did the whole ob/gyn checking for fibroids, doing the endometrial biopsy, ultrasound, etc. to evaluate my heavy periods. I came back with nothing (thankfully) because my heavy bleeding is really just caused by my ITP, which makes it a hematological problem, not an ob/gyn problem.

Just a few days ago, my hematologist prescribed Lysteda (tranexamic acid) for me to manage my monthly bleeding. It is a pill to be taken only when bleeding to decrease blood loss. I'm going to give it a try, so I don't have experiences using it yet, but that might be something specific you can ask your hematologist about. I've never gone the hormonal birth control route to manage things (that can create its own problems), but if you opt for that, make sure that you find options without estrogen therapy. Estrogen can negatively affect ITP expression in women, so you don't want that!

Certainly research the rituxan, but I agree with the others that Promacta/NPlate are the best treatments we have available now with minimal toxicity.

Regarding the anemia, I am always struggling with it because of my blood loss, so see what you can do to get ahead of that as well. Oral iron is good to start with. Most of my doctors have recommended Vitron C iron, and I usually take between 2 and 3 pills a day. Whenever I get out of the habit, my hemoglobin always starts getting too low. Though anemia is so common and often discounted as not serious, it can be very debilitating (low energy, hair loss, etc.). Try to get ahead of that with diet and oral supplementation. If that proves not to be enough (it can be tough to get ahead when every month heavy bleeding causes us to move two steps backward), IV iron infusions are an option as well. Those are also managed by a hematologist, so I hope your guy can get his act together and treat some of your issues! Good luck!

Did not think about the Dropbox thing. Thanks Mrs.B

Thank you for the advice. He does have her taking 3 oral iron + vitamin C every day on an empty stomach. It's making her nauseous, but she's hanging in there with it. I would like her to see a different doctor, I think. There's another doctor in the practice that is a woman, and I think maybe we will ask if it's possible to see her instead. This doctor never mentioned Nplate or Promacta. I've been trying to become better informed about treatment options. When I asked him about possible side effects of Rituxan, he said that a few people get a minor headache, but most people have no side effects. That has not squared up with my research, and I just don't feel very confident that he's the best person to see for this, even though his qualifications would say he is.

Most people do fine with Rituxan. I wasn't that lucky. I had one of the side effects that Troy mentioned above (serum sickness). It was a horrible thing to go through and because of a doctor's misdiagnosis, I ended up having serum sickness twice. Knowing what I know now about Rituxan, I wish I'd never had it even though it worked for me.

Your daughter is so young. It would be a shame to start with the heavy duty treatments since treatments can do more damage than low counts. The trick is to find a balance. Mom is right about BC pills adding more problems; I'm not advocating for them as a long-term solution. My daughter had heavy periods at the age of 14 (did not have ITP, turned out to be thyroid) and she was taking a very low dose of BC. After a few weeks, she became depressed and was crying all the time. She had to stop taking them.

If symptoms do become a problem, there are other options and like I said, a low dose of Prednisone might get her into a safer zone without major side effects.