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Husband just diagnosed- need advice 3 months 2 weeks ago #71599

  • dominiquegriffin
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Where do I start?

11 days ago my husband woke up feeling unwell with a rash over his body and having nosebleeds.
He was rushed to hospital and said his platelets were at 1. This was new to us. And they said it was probably ITP.
He was also feeling unwell with fevers.

They started him on steroids and IVIG for 3 days and it did nothing but push his platelets up to 4. Still staying in hospital.
They then did a bone marrow biopsy. Still waiting for results.

On Friday just gone they started him on rituximab and antibiotics for the fever. His platelets still at 1 yesterday- obviously I know it’s not going to work overnight.

He said he feels ok, no more bleeding either.
I’m just scared and worried every moment of the day and don’t know what to think. This is all so new to us and I am 30 weeks pregnant.

Before this he was a healthy guy with no medical problems at all. I am hoping an infection has caused this and soon as it’s gone his platelets will go up. His other bloods are all ok.

Anyone been in a similar position and everything has worked out well? Is there any other treatment I can ask he goes on as well?

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Husband just diagnosed- need advice 3 months 2 weeks ago #71602

  • CindyL
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Hi Dominique. I'm glad you found this page. I've been following your story on Facebook.
Take a deep breath and try to relax. Rituxan can take a while to work. I was lucky, it worked for me.
I'm sure someone will chime in and give you lots of advice.

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Husband just diagnosed- need advice 3 months 2 weeks ago #71606

  • MelA
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Hi Dominique - Know this is frightening for you, try to stay calm as being upset and anxious won't help either you or your husband, baby either. I've had ITP since 1989 and have never felt bad from it - some people complain of being very tired or exhausted though. I have not heard of ITP causing a fever or an ill feeling - so maybe you are correct about maybe an infection causing the low platelets. Rituxan does take a while to kick in, I have not had it but I believe it is at least 3 infusions of it [someone will correct me on the # of infusions]. There are other treatments however since he was just started on Rituxan if another treatment is introduced and his count goes up you wouldn't know which treatment was helping.

We are here for you! Hopefuly someone with more knowledge than me will get to you soon - weekends are usually slow. In the meantime think positive!! Keep us posted please!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Husband just diagnosed- need advice 3 months 2 weeks ago #71607

  • gozorakgogo
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Dominique. I was in the same situation this time last year. Healthy, active, energetic, never went to the Dr because I never had the need to go. Had never been a patient in a Hospital other than tonsil removal as a kid. Last June I began developing bruising all over my body, I felt incredibly fatigued and not well. Scheduled a Dr's appointment and the morning of that Appointment I awoke to see that rash(Petechiae) consuming both lower legs. It looked horrible. Blood test as Dr had my platelet level at 2 and I was told to go to the ER Immediately. COnsidering how I looked and felt I assumed that I was headed for my last round up for sure.

I spent 6 days in hospital. I was on Prednisone and multiple IVIG infusions which brought me up to a level of 42. I was released and tested every 3 days. 6 days out of hospital my platelet level was back down to 3. The bruising, the petechiae, looked even worse and on top of it I developed those black blood blisters in me mouth as well as bleeding in the gums. I was back in hospital for 4 more days this time in the ICU where I received a platelet transfusion(which didnt work) The decision was then made to begin 4 weekly Rituximab infusions along with weekly Nplate injections. It took about 3 weeks for my platelet levels to respond positively to those treatments but respond they did.

I was out of work for 7 weeks but eventually my levels were well within normal range. I stopped the Nplate injections last November and my levels have been stable at 100 since that time.

So, I understand your concern. Believe me, the first month or so is nothing but confusion, stress, and concern especially when waiting for the next blood test result. It can be a bit devastating as your platelet levels appear to rise over multiple CBC's only to have the level drop. It happens. It took a few weeks for the Rituximab infusions to begin to register significant increases in my platelet levels but eventually it did.

This site is a great resource. Although there is a great deal of anxiety about ITP when the cause can not be determined there is a lot of helpful info here. The most helpful thing I have found however is that the vast majority of us who have ITP are still around. EVeryone is different and we have all pretty much had different combinations of treatments but here we are. Still alive and kicking. you and your husband will get through this. Its going to take time to adjust to what it all means and waiting for the treatments to kick in but they will.

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