rapid drop in platelet

[clairekim]

Hi all,
My wife was first diagnosed with SAA in Nov 2011. She was treated with horse ATG and cyclo. We started to taper cyclo about a year ago from three 100mg pills per day to two to one to now one every other day. And just about couple of week ago, we started to notice bruises on her leg. CBC revealed that her platelet was only 6000. We just performed bone marrow biopsy at Md Anderson. It shows that her SAA is back.
The weird thing is that her platelet count was ok in mid September(120,000 which is the level she had for more than 2 years). And it took nose dive in just matter of days. Has anyone also experienced sudden drop in blood count like this? I am just wondering if in fact she may be dealing with something other than just a bone marrow failure.

[Hopeful]

Hi,

I am sorry to hear about your wife's relapse. Did she take any new medications or supplements? Any changes to her diet or possible chemical exposure? Surgery or major illness? These could cause a sudden drop that can be reversible. Look back carefully at the past 2-3 months.

[clairekim]

Thank you for your response. I agree with you 100% that there is an external factor causing this issue.

There really is nothing that changed though. One thing I suspect is the fact that she's been taking Keppra for her seizures. She was on this medication for about a year when she was first diagnosed with SAA in Oct 2011. At that time, the doctors had a small suspicion that this may be related, but they didn't do anything knowing that it's only a very rare chance. At that time, her counts dropped in short period of time as well. Study does find that people taking Keppra have much higher risk of developing AA.

Exactly three years later, it's happening all over again. People may think I am crazy, but I believe her immune system gets compromised during this high allergy season (we live in Austin, TX), which combined with Keppra side affect is causing her bone marrow to shut down.

We are going to go talk to our Neurologist to see if we can move to another seizure medication next week. Wish us luck!

Thank you and good luck to all of you.

[curlygirl]

My son's decline into SAA was very rapid and had to do with him getting upper respiratory viruses (his only positive tests are rhinovirus/enterovirus). He was diagnosed in Apr 2013 with a nasty upper respiratory virus & SAA, started to recover on his own from the SAA in May, rapidly declined in June, and had ATG in Jul. Counts started to recover nicely then he got an upper respiratory infection with a fever in Dec that sent his numbers back down to where they were in April, but luckily he was on cyclosporine still and he recovered in a few days. So basically he had a relapse but his cyclosporine helped him recover from it. He's on a taper now and doesn't finish until Apr 2015. It makes me wonder what will happen when he gets his first enterovirus after he does. It also makes me think that he should perhaps be one of those people that should have a low dose of cyclosporine forever, but I guess we shall see. I would think they'd try increasing your wife's dose again and see if the platelets come back up? That works for some people.

[clairekim]

Hi Curlygirl,

Thank you for sharing that with us. What is causing his virus? Are you doing anything avoid the virus?

I spoke with our Neurologist, but he's quite adamant that Keppra is not what is causing this problem. His reasoning is that AA didn't happen the moment she started taking this medicine.

But I still think there is something to do with this medication. It may be that her bone marrow is reacting more sensitively to this medication in the presence of some other factor. Otherwise, I can't explain how her counts could drop like that within just matter of days.

Good luck to you all.

[Marlene]

When John was being treated at Johns Hopkins in 2002, there was a 16 year old girl getting a BMT for SAA caused by her epilepsy meds. Sorry I don't know what she was on, but to them, it was clear that it was the medicine that caused her SAA.

You can be on any med without problems for a long time and then all of sudden, you start having problems. And some things take longer to manifest.

I hope you can try other medications and get the SAA under control again.

[curlygirl]

Clairekim,

I'm sorry, I haven't logged on in a bit. There's nothing to really do to avoid enteroviruses, they're as common as the common cold (rhinoviruses). My son stayed out of school for 9 months but would sometimes catch them from his brother. Now his white blood cells are in the normal range and he is back in school. He's had 4 colds in 8 weeks, though. Just this last weekend my husband and I were worried about him because his color was different, like it is when he gets sick. It's not his hemoglobin going down - he had an appointment on Fri and it was steady (although his platelets were down by close to 30k but still at 100k) , but his look changes. Then on Monday afternoon he came home from school and *bam* he looked better. I looked at my husband and said, "he's better" and he said "yup". It's odd, you can actually see it. But luckily he's recovering from whatever it is, I guess, rather than it staying. But it's also a bummer because that process is still there, so we don't know what it will do when he weans off his cyclosporine. Please let us know what your wife's doctors decide to do. I've read various studies about relapsers responding to cyclosporine "monotherapy" (i.e., where the doctors start giving cyclosporine alone again hoping to bring counts back up rather than doing ATG again automatically) and the statistics seem to be between 40-60%. If I find a study I will post it for you.

Originally Posted by clairekim

Hi Curlygirl,

Thank you for sharing that with us. What is causing his virus? Are you doing anything avoid the virus?

I spoke with our Neurologist, but he's quite adamant that Keppra is not what is causing this problem. His reasoning is that AA didn't happen the moment she started taking this medicine.

But I still think there is something to do with this medication. It may be that her bone marrow is reacting more sensitively to this medication in the presence of some other factor. Otherwise, I can't explain how her counts could drop like that within just matter of days.

Good luck to you all.

[dfantle]

Clairekim, im so sorry to hear your wife's SAA appears to have returned. You mentioned her cyclosporine tapering, a couple of questions:

When was the last time she reduced the dose?

Has her hematologist increased her dose since you discovered the recent low platelet counts?

Has she had a flu shot or any other immunizations recently?

Have there been any vitamin changes or have they checked her current levels?

How are her other blood counts?

Best, Dena

[clairekim]

Hi all,

Thanks for your comments. My wife was admitted to MD Anderson couple of weeks ago for ATG treatment. We went with ATG-Horse again plus oral Promacta(Eltrombopeg). It's only been a week, so her counts are still rock bottom. Her platelet is in low single digits, so she gets tranfusion every other day now. Her ANC was 0.0 but now started to creep up, which I think is the Neulasta shot she received right after ATG. Her Hemo is at around 9.5 because she received some blood right before ATG.

By the way, our doctor gave my wife an IVIG transfusion hoping to see transfused platelets last a bit longer in her body. It seems like it worked for couple of weeks.

We are now in the waiting battle. Y'all know how that is. During the first treatment, it took us almost 2 months before her counts started to move.

When the counts stabilize, we are going to taper off of her Keppra. She's epileptic but her seizures have been well controlled lately. Hopefully, her spells don't come back even after the tapering.

Good luck to you all.

[Caregive]

Thanking of you. My husband's platelet count went down too and we aren't sure why. They are rebounding. I did look up lists of things that might affect the count. Heparin and Tylenol are on the top of the list of substances that may bring the numbers down. I do research things but sometimes get tired of doing that. So I'm between things right now. I hope you get some answers on this issue soon. Sue

[sues]

I am newly diagnosed with a plastic anemia and have not had any treatment yet. Living with low platelets is no fun. Need advice on treatments.