Newly diagnosed and counts are uncontrollable

Hello,

I'm hoping to get some guidance. My mother was recently diagnosed with ITP (79 yrs old). She had Graves disease and takes Synthroid and is also diabetic.

Most recently she had a double bypass in October and began treatment for pulmonary hypertension in early December. In mid December she was diagnosed with ITP during routine blookwork. Her counts were down to 40,000. They reduced her blood thinner and they came up to 85,000 in a week. She then was hospitalized with bronchitis and while in the hospital her counts came up to 121,000 with a steroid treatment but quickly fell. They got them back up with IVIG and more prednisone and she was sent home with 20mg of prednisone. In one week they fell to 22,000 and she was put back in the hospital. The next day they were down to 9,000. She was given rituxan and ivig. Platelets went up slightly and then back down to 11,000 two days after treatment.

She is currently off the blood thinner (which she needs for A-Fib) and all other meds we thought could be a problem. She is just not responding to anything. Now they are talking about N-plate.

I've asked them to start weening her off the steroid if it is not working and I also asked for an H-pylori test and for them to check her thyroid level. We're scared! Why isn't she responding to treatment? What else can we do?

Hopeful:

It seems that your mom is responding to treatment; the counts just are not staying up. That can sometimes take a bit of time. IVIG is a very temporary treatment, more like a rescue treatment, so it's typical to drop quickly after that one. I can't tell if she is responding to Prednisone or not - not enough info, but sometimes it takes a pretty high dose for a few weeks to get a good response. Rituxan can take 4 to 12 weeks after the first infusion to work, so that could be a wait. I understand that you don't have much time because you want her back on blood thinners. N-Plate is your best bet for now. Most people respond well to that and it can work fairly fast....days to a few weeks.

In the meantime, try to stay calm. They can get this under control, but it might take a bit of time. One of the side effects of N-Plate though can be blood clots, so you'll want to discuss that risk with her doctors. It seems like they are doing everything possible right now; it's a tricky situation.

P.S. Which blood thinner was she on? Was it Heparin? Sometimes Heparin can induce thrombocytopenia.

Sandi,

Thank you so much for responding. We are just so scared. Yesterday at around 1pm they gave her the N-plate injection. Today her count is down to 5000 from 11,000 yesterday. The doctor says we have to give it more time to work. Today they aren't going to do anything. I just don't understand why she is not responding to anything. I see that most people's ITP drops their numbers slowly. My mother's drops seem to be so aggressive. Is this common?

Also, she was on Pradaxa.

Thank you again for responding. It is difficult not to have anyone who really knows about this condition.

Mayra

Counts fluctuate normally, so what can seem like a drop can also just be a normal change. Platelets are constantly produced and destroyed. Counts of 5k and 11k are not much different since there can be a margin of error when counts are done. A platelet count can change that much in an hour, going up and down is typical. Some people have also had two different counts from the same blood sample.

Many people here experience fast drops, that is also not unusual. N-Plate can take a few days or weeks to show a response, so it would be odd to see a jump in counts in one day.

It's okay to not do anything else for now. Pounding someone with too many treatments can be bad too. You wouldn't know what is working and side effects can be nasty.

Many people can live just fine with counts under 10k, but the elderly can have more bleeding problems than a younger person. How are her symptoms with the low counts? Some people can handle low counts with few bleeding symptoms, so looking at that is important too.

Sandi,

Thank you for putting me at ease. She does not have any bleeding symptoms (other than bruising from the IV's). I guess we just have to wait and see what happens.

I know it's frustrating. Hang in there. Not having bleeding is a very good thing. Many people have gone through this and then suddenly, things turn around for the better. The fact that the doctors are using N-Plate shows that they are familiar with the latest treatments. That is also a very good thing!

We're now one week into treatment and there is no improvement. Counts are worse. Today she is at 4000. Tomorrow they are going to do the Rituxan treatment again and on Monday they will do the N-Plate again. I know you have mentioned that it can take time but is there anyone out there that has had this problem. They did a bone marrow biopsy yesterday but the doctor doesn't think he will find anything (that's a good thing!). He also looked at her platelets in the lab and he said they are nice and big which is a sign that they are new platelets which means her body is making them. He really trying to be as comforting as possible but even he is clueless as to why her body is not responding. She started taking b-12 sublingually, vitamin C and vitamin D3. Is there anything else we could be doing that may help?

Yes, many people have been in the same situation as your Mom. Really. Like I said, it takes time but most people do eventually respond to treatments. There really isn't anything else that can be done. They could try IVIG again or maybe Decadron, but too many treatments aren't a good idea and N-Plate is the best bet. Try not to dwell on the numbers, look at the symptoms.

Thanks. They are also reducing her steroid from 30mg to 20mg since she is not responding to it.

Here are some similar stories that you might want to read.

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/26725-scared-cant-get-level-above-3.html#27467

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/28018-looking-for-some-answers.html#40622

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/27214-80-year-old-with-refractory-itp.html#31248

pdsa.org/forum-sp-534/6-general-itp-discussion/24252-refractory-itp-not-responding-to-treatment.html#24385

pdsa.org/forum-sp-534/8-natural-treatment-methods/28261-what-worked-for-my-dad.html#43287

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/26725-scared-cant-get-level-above-3.html#27820

Sandi,

Thank you so much for your support. The articles helped. On Saturday she received another Rituxan treatment and a platelet transfusion. The transfusion brought her up from 3 to 41 and on Sunday she was back down to 20.

However, today she woke up at 40!!!! (We're doing a happy dance!!!) Hopefully, the Rituxan is kicking in.

I must tell you this website has truly been a blessing at keeping us sane through all of this!

Thank you again.

Well this is good news! Rituxan generally takes 4 to 12 weeks to work, but some have had earlier responses. I hope this is the start of a good, long remission!

Hopeful,

So happy the Rituxan seems to be working! That is a nice quick response, which can be a good sign.

Also, you wrote:

She then was hospitalized with bronchitis and while in the hospital her counts came up to 121,000 with a steroid treatment but quickly fell. They got them back up with IVIG and more prednisone and she was sent home with 20mg of prednisone. In one week they fell to 22,000

For future reference, especially in case of emergency:

I am not sure that the prednisone wasn't working. I don't know what dose they had her on initially in the hospital, but it may be that they decreased her dose too quickly when they sent her home, which often causes platelet counts to drop.
In short, it looks to me like steroids are effective at least in an emergency.

Also, platelet infusions are only worthwhile to treat dangerous bleeding. The effect of platelet transfusion is very temporary, as her immune system will wipe out alien platelets quickly, and each subsequent transfusion tends to last a shorter time, so their use should be saved only for when nothing else will do the job.

IVIG is temporary, but generally lasts much longer than transfusion, and I have not heard of subsequent treatments becoming less effective.

Remissions due to the use of Rituxan can be permanent, but usually, if one is lucky, it lasts 1-2 years, and can be repeated. If she sees signs of unusual bruising, etc., she will need her platelets counted again.

If she is put back on blood thinners, I would advocate strongly for the heparin/warfarin thinners because they can be reversed in the ER with injections of vitamin K. The newer blood thinners, like Pradaxa, though less hassle, are irreversible (so is aspirin!). This could be a problem if she were to fall and hit her head. They might not be able to stop the bleeding in the ER. This is especially a problem if her platelets drop, which they most likely will do sooner or later.

She should be wearing a medical alert bracelet.

While you are at it, you might want to evaluate her living situation for fall risks, and do all that you can to minimize them. Pulmonary hypertension puts her at greater fall risk, and ITP and blood thinners increase the chances of a fall being fatal. Bathtubs are slip hazards, and walk-in showers are better. Look for trip hazards. Make sure there is adequate lighting, especially near steps, and if needed use nightlights or leave some lights on. Almost any investment is worthwhile, if you consider what a fall may cost. Sorry to go long, but my mom broke her pelvis twice, and the time and expense involved were enormous.

Certainly be happy and thankful, but be prepared in case there is a next time.