Katie Meloy

Hey, how are you doing?

Hi Sandi,

Thanks for checking in! I'm still in hospital and taking eltrombopag daily as well as my weekly dose of rituximab which is due tomorrow. My count yesterday had gone to 5 so hopefully it's on the rise now.

I had a bad gushing nose bleed on Monday that wouldn't stop so had to have my nose cauterised. The doctors want to keep me in still until my platelets have gone up more. I still haven't seen my regular hemo although she's back Monday so hopefully I'll see her then.

I'm a little concerned about being on the eltrombopag aswell as the rituximab. I'm only in hospital due to being 'symptomatic', now I have no symptoms at all I was hoping I could go home. But the hemos are insisting I stay in hospital and on the eltrombopag to keep my count up (even though I'm not sure what's caused my count to go up). It's all just become very confusing and id rather keep it simplistic by staying on one drug at a time to see how well I respond to them.

Id voiced my concerns to the hemos but they have just said they are more concerned about getting my count higher faster so I'm at a safer level. I think I'm just over thinking things and my brain is turning to mush being in hospital for so long. I was just wondering what your thoughts were?

Thank you for checking in. Really appreciate it

Katie

Just got my count for today!!! 12!!!!! Yipeeee!!!

Although they still aren't sending me home... Maybe tomorrow

Katie:

I'm relieved that you are where you are. A few more days won't hurt. It's okay to do both of those treatments. You need to get to a safe level at this point. Better safe than sorry!

I'm glad you checked in. I was worried.

Sorry i didn't check in any sooner! Didn't mean to worry you, although thank you for the concern

Oh goody, it's nice to have your opinion and advice, I just start overthinking things haha! I forgot how much this forum puts my mind at ease! Wish I'd have checked in sooner!!! I'll keep you updated!

Many, many, MANY thanks!

I hope your counts go up soon and you can stop thinking about all of this. Agree, don't over-think! You'll drive yourself crazy.

Hey Sandi!

My counts went up to 30 yesterday so I've been discharged from hospital!!!!! I've got an appointment Monday and Friday to make sure my count isn't going crazy high too fast with all my treatments but things are defiantly looking more positive! Thought id check in and let you know! Thank you for all your support, advice and help!

Good news, Katie! Keep us posted.

Hello!

Thought id pop by and give you a update. So far so good, the immunoglobulin seems to have kicked in and my counts are up to 416 as of last Friday. I've had my final rituximab and I've been tapered of the eltrombopag. So I'm currently drug free hopefully the counts will take there time to come down until the rituximab starts to work. I have another appointment this Friday so I'll keep you updated.

I'm really hoping the counts are in a 'normal' range still because I'm booked in for a tattoo on the 11th! It may seem a little crazy but I wanted to take advantage of being a 'normal' person haha!

Hope your well, it's been interesting to read over some of the more recent topics too, it's always very educational. Thank you for all of the support and advice

Good news, Katie! Maybe Rituxan kicked in and you will be good for a long time. Keep us posted and don't be a stranger!

Hi Sandi!

My counts have been promising since we last spoke and on my last appointment a week ago my counts were at 226 (very happy)!

Over the last couple of days I've had a sore throat and cough, I also feel exhausted and have been very shaky! Could my exhaustion be a sign of dropping platelets?

My next count is in two weeks. Do you think it would be a good idea to ring my hemo and get a count sooner? Or wait it out and ring if I get any low count symptoms?

Many thanks,
Katie

Katie:

If you have a sore throat and cough, you could feel tired due to a cold or virus. Give it a few days and see how you feel if you don't have any ITP symptoms.

Hi Sandi,

I wasn't entirely sure where abouts to message so though it might be easier here. I've had very good stable counts at around 230 for last 7 months since having Rituxian and immunoglobulin. I'm not sure you will remember or not. When I had the immunoglobulin I had a bad reaction. The doctors were unsure if it was maybe a small bleed on the brain that resolved itself or chemical menginitis/ a severe reaction to the medication.

Yesterday I had a very similar experience. I started having tingling sensations in my hands and face, was finding it difficult to speak and starting vomiting with a severe headache. My parents paniced and rang the hospital who told them to bring me straight in. They presumed my counts had dropped. I recovered after about 8 hours and found my counts were fine. The doctor thinks it may be migraines and it was I suffered from when I had my immunoglobulin.

I was just wondering if this is something I should maybe be concerned about or should start researching further into? Is there any links between ITP and migraines? If so, would these links possibly apply to me despite having high stable counts? It happened very out of the blue. I'm back at the doctors in a couple of days.

I hope you are well. Sorry I haven't been back in a while. I've been checking in from a far. It's sad that this is my first port of call when given negative news!

Thanks, Katie

Hi Katie! Yes, I remember you! I'm glad that your counts are holding up.

Yes, I think I would follow up on your symptoms yesterday. Those kinds of symptoms can be related to several things; low platelets being only one of them. Did they do an MRI or CT scan on your head? If not, I think you need to see someone who would schedule that for you, soon.

It sounds like a TIA or some sort of clotting event. I know this seems strange, but ITP is sometimes connected with clotting disorders, one of them is called Antiphospholipid Syndrome (APS). ITP can actually be a symptom of that. It can be diagnosed with a blood test. Does your Hemo know about this? If not, you should call him. It's possible that you could be just fine, but this is not something to take lightly even though you seem fine now. I'd take it as a warning. I do not think it is related to IVIG at all.

www.apsfa.org/aps.htm#13

Please check back and give me updates, ok?

My daughter had an episode like that, actually she had it twice. Nothing abnormal showed on MRI and they said it was a sort of migrainous side effect of the contraceptive pill. She had to stop taking it and hasn't had a problem since. Any drugs or supplements that you are taking that could have caused it?

Wow, Ann - scary! I'm glad to know that those things can happen and nothing is wrong. That is reassuring. Still, I would get it checked out. I often hear stories on the news that sound just like that, and they were TIA's/mini-strokes. Hopefully, it's nothing!

I've not been on any medication including birth control for at least 3 months now Ann. I don't even take paracetamol anymore.

I didn't have any tests done yesterday Sandi. Although I had a CT scan last time it happened to see if there was a small bleed. They said it came back clear. I'm not seeing my hemo until Nov 24th. I'm seeing my GP on Thursday and will defiantly bring it up to him! Is there a chance that it is just coincidental?

I'll do some research over the next few days and see what the doctor says. Is it worth pushing for the blood test to be on the safe side?

Thank you for your help!

Here is a good case scenario:


www.youtube.com/watch?v=4-QTS739cQw

Not so good scenario:

Despite the prothrombotic nature of APS, thrombocytopenia is present in a proportion of patients. which can complicate management and limit the use of antithrombotic therapy. The mechanism of APS-associated thrombocytopenia is multifactorial and its relation to thrombotic risk poorly characterized. However, the presence of thrombocytopenia does not appear to reduce thrombotic risk in patients with APS, who can develop thromboembolic complications necessitating antithrombotic treatment. In these cases, treatment of the thrombocytopenia may be necessary to facilitate administration of antithrombotic agents.

The most common presentation of arterial disease in APS is ischemic stroke, observed in 13%, and transient ischemic attack in 7% of patients meeting consensus diagnostic criteria. Population-based case control studies suggest that the presence of LA or aCL is associated with a 2-fold increase in first time ischemic stroke and anti-β2-GP1 antibodies may be associated with a 2-fold increase in myocardial infarction. However, the risk of recurrent arterial thromboembolism in patients with APS is not well defined.

asheducationbook.hematologylibrary.org/content/2009/1/233.full

Yes, I'd push for the labs to be on the safe side. Years ago, my Hemo insisted that I could not and did not have APS. He wouldn't test me. A few years later, my Rheumatologist did and I had the antibodies. I'm on daily aspirin as a preventative measure. If I began to have symptoms such as yours, I would definitely have labs to see if the antibody levels were elevated (they can come and go). It's nothing to play around with, especially since ITP can be a factor in this.

In my opinion everyone with ITP should push for an APS test although the latest international guidelines don't recommend it which to me seems odd especially when they say that 40% of ITP patients will have antiphospholipid antibodies. I have twice asked to be tested and been negative both times.

www.bloodjournal.org/content/115/2/168.full?sso-checked=true

Agree!

Oh wow! That's exactly what it was like! My hands and face and speech. Then obviously vomiting and really horrible sensitivity to light and sound and headache. That's really interesting. I will make sure to push it at the doctors. If not I'll ask my hemo to do a test.

Are the antibodies something that can fluctuate over time? I can't believe how much better I'm feeling today. If anything I just feel tired, achy and hungover. It's very bizarre to think it could be something like that. I'll be very interested to see the results! Thank you for your help!!!!!

... [Serene Branson] learned from doctors that her condition had been caused by a "migraine with aura." Dr. Neil Martin, chief of neurosurgery at Ronald Reagan UCLA Medical Center, said the symptoms resemble those of a stroke and can include weakness, loss of vision, difficulty speaking and headache. - LA Times

Katie, all of your symptoms can indicate migraine, just like with Serene Branson. That is the "good case" scenario that Sandi was writing about. But the outcome could have been stroke. It can be hard to tell the difference until the damage is done. APS testing should be done for anyone with ITP.

Yes, the antibodies can fluctuate and even go away, but probably not within days of an event. Usually with APS, testing should be done twice, at least 6 weeks apart.

GOOD NEWS!

My GP agreed to do the test, I didn't even have to persuade him. He tested all sorts: thyroid, kidneys, iron, iron stores, loads, he even retested my platelets! I swear they took about half a pint of blood out of my arm!

All of the results look fine, although he's asked that I start keeping a day to day diary about how I am feeling, my diet, exercise, and overall lifestyle. He's hoping that if anything happens in the future we might be able to find a cause, or at least a pattern.

So for now we think its just Migraines thank god! I'm counting my lucky stars right now! Thank you yet again for all of your help. You guys truly are the best!

Great news! I'm glad everything is good!

The stroke like symptoms with the nausea and severe headache. Sure sounds like a migraine variant.

First time it happened to me I truly thought I was having a stroke. When all the tests for a stroke came back clear that is when the doctor mentioned migraine. I said I've had migraines before but nothing like this. He proceeded to explained all the different types. In the end he diagnosed me as having a Migraine variant.

Sometimes I get an aura before and sometimes just a twinge. You know it is a migraine by the nausea and the sensitivity to everything. Over the years I've had a few different types of migraines.

Migraine with aura
Migraine without aura
Migraine with aura and without pain (this is the creepy type you feel all spacey)
Migraine variant
Ocular migraine - can be with just pain or without pain and a loss of sight. (luckily never lost my vision)

I once had a migraine that lasted 3 weeks.

Here's hoping you do not have too many more of them. They can be annoying!