Our ITP journey began 2 months ago. About 4 weeks after the first Covid vaccination (Moderna) my husband developed ITP symptoms. It started with petechiae on the legs, which a few days later spread over his whole body. As he got blood blisters in his mouth, we rushed to a hematologist. The result of the blood analysis was quite shocking: his patelet count was 0.
He received platelet transfusion immediately, but the next day his patelet count was only at 6. Then the doctor refered him to the hospital. He stayed there for almost 2 weeks and received 2 dexamethasone pulses (1 in 1 week) and high-dose intravenous immunoglobulin, but his counts never rose above 39. They did a bone marrow biopsy but found nothing. They also noticed that his spleen was enlarged (15cm).
A few days after he was discharged from the hospital, his patelet count crashed again to 10. The hematologist gave him immunoglobulin plus my husband startet using eltrombopag (revolade/promacta) 50mg and his count increased a bit. The following week his patelet count crashed again to 7, so he received another dose of immunglobulin, which rose his patelet count to 54. But his spleen has grown larger (16,5cm) and the doctor already talked about removing it.
One week after his patelet count was at 54 it crashed to 5. The hematologist send him to the hospital again, where they gave him immunoglobulin and took a bigger piece of bone marrow. But they did not find anything in the second bone marrow biopsy either. In that days eltrombopag was increased to 75mg.
After that his counts were pretty good for four weeks (around 69 – 105), but now he is at 10 again. He is already receiving immunoglobulin for 2 days, but this time his counts aren’t responding. The doctor is about to send him to hospital a third time because his count is so low, but he hasn't developed any symptoms yet. So we don't think that's necessary. Did you stay at home with counts that low?
Has anyone ever experienced that Ivig suddenly aren’t working anymore?And can anybody tell if a enlarged spleen can shrink again? We don’t think that one should remove the spleen 2 months after the ITP diagnosis, like the doctor said.I have read that people experienced similar patelet count drops after the first Covid vaccination, but was the effect only temporary? If so, how long did it take?Is it okay for the platelet count to drop back to 10 even though 75mg eltrombopag has been taken for several weeks or is it just not working? Has anyone of you switched from eltrombopag to Nplate and it got better?
As you can see we have many questions and hope for your answers and your experiences.
In answer to the question about having counts of 10 and staying out of the hospital-
I've had ITP for 12 years. During that time my counts have been below 10 many times and I have gone to work, driven my car and gone about my business. I've had counts of 1 and 2 which are basically the same as zero. And I have never been in the hospital. Its because my hematologist (San Francisco area) looks at symptoms rather than just counts and I usually don't have anything more than petechiae and bruising. If my counts are below 10, I take some prednisone. It sounds like your doctors are doing the right things and using the up-to-date treatments. With ITP a person has to get to know their own body to figure out if they are okay with counts of 10. Its a risk to have low counts but the treatments are risky too.
Nplate (romiplostin) is similar to Eltrombopag but not the same. Sometimes Nplate will work when Promacta (eltrombopag) does not work and the other way around. It sounds like a good option. I have been on Nplate weekly injections for 5 years. It seems to have no side effects for me. It keeps my counts around 20-40. This is safe for me though not for everyone. Sometimes my counts drop down below 10 and I take a bit of prednisone and they come back up the next week. I can't answer any other questions, good luck in finding your answers.
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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I was admitted to hospital overnight when I was diagnosed 7 years ago with a count of 12 and sent home the next morning.
Since then I've had counts in single figures many times and have never been readmitted.
I worked as a front tine nurse with counts as low as 2.
IVIg only produces a transient response. It is classed as a rescue remedy.
Thank you both for your replies.
I feel like in the last two months I've read hundrets of studies and guidelines regarding ITP, but we all know: knowledge is power. Thank you mrsb04, I didn't know this guide yet.
Our hematologist is always worried, when the count is below 20. Especially when the weekend is approaching and he is not there to check the counts. I think we will pay attention to symptoms before going to the hospital again.
The hematologist also said he doesn't like giving Nplate, but we don't know why. I also think it's worth a try, nobody knows if it's going to work or not.
Just to keep you updated: we did not go to the hospital that weekend and that was the right choice. My husband was asymptomatic and a few days later the counts went up to 35.
But today we had a heavy throwback as his count crashed again to 1. He went to the hospital voluntarily. The doctor there said maybe it's time to try other medication like Rituximab/Rituxan, Avatrombopag, Fostamatinib, Nplate, ... we don't know exactly what to expect from those medications, but we'll see. I've read many studies about the other drugs so I'm confident. It can't stay the way it is now. Like every 10 days Immunoglobulin and counts in the single digits.
It's wise to try another treatment. IVIG shouldn't be considered a permanent solution; it's only a "rescue".
I can tell you I've been taking NPlate for 7 years without any side effects. I've finally found the dose that keeps my count in a low but safe place. During the first few years, I experienced frustratingly wild swings in count; but I'm satisfied with what it does for me now.
The very worst thing about ITP is the unpredictability of disease and response to treatment for it. There is no "best" fix for everyone. It takes hopeful patience to find what works best for each. I'm sorry this has happened to your husband and hope his case is temporary and will remiss soon.
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