New to ITP

Hi Everyone.

Im not sure where to start. I found this web site out of desperation a few weeks ago and I guess i am looking for support.

My husband was diagnosed with ITP approx 5 weeks ago. Since then he has had three hospitalizations. It all started with a few little blisters in his mouth and a rash on his leg. He went to see his family doctor who did a CBC and it was discovered that he has a count of 6. I drove Zac to emergency where his count dropped to 2 by the end of the night. The doctors gave him the IVIG and Prednizone (100mg) in three days he was back to "healthy" counts and discharged and advised to continue on the prednizone until they tapered it off.

About two weeks later Zac noticed the blisters in his mouth again so we went back to the family doctor who again ordered a CBC the count was again 6. I drove him back to emergency where by the end of the night his count was at 0. They did the IVIG and prednizone for 5 days. during that time Zac's count went to 4, it then dropped again to 0. At that point he was given a platelet transfusion because he was passing a small amount of blood in his urine and a very small amount of blood in his nose. At this point we were desperate. They started Nplate, dexmethanzone and mabthera. It took a few days but the count went up to a healthy range again. Zac was discharged and sent home on prednizone and to have weekly n plate injections.

A few days ago we attended the clinic for the weekly cbc and n plate. Zac's count had dropped back to 1. We are devastated. They want to take his spleen out but have to get the count up first to operate and give him vaccinations. This could take weeks. I am really concerned that they are going to send him home again and his counts will drop again.

This illness has been so difficult to adjust to. Im trying to be reassuring to my husband, we have our faith and we pray every day.

Is anyone able to give me advice? What questions should i be asking the doctors?
Thanks
Rach

Hello Rach Glad your here. Well, not glad for Zac, but you know what I mean! What a roller coaster huh? In the long run, it's gonna be alright. It seems that the docs have tried quite a few things, and that's good! There are still a few things they can try before removing his spleen. I also have had a count of only 1. I had Rituxan and my counts have been in the "safe" range for more than 2 months now. Some have tried Promacta and it's working for them too. Sometimes it seems the docs are so quick to recommend taking the spleen and sometimes that doesn't work either! We're here for you and Zac. I'll be praying

Rach, I'm sure you'll find this site a blessing. There's a lot of ITP knowledge here and the experiences you'll find will hopefully be comforting. You've just started a new journey and everyone here is anxious to help you find your way. But know it might be a life long journey since there's no "cure" for ITP (I'm 10y and counting). However many live quite well, we'll happily tell you, with ITP.

The biggest point is everyone's ITP is different. What works or doesn't for one, might invoke a positive result in Zac - one size NEVER fits all regarding ITP. Also your decisions are personal, treat with x or y, treat or no treat, surgery or no surgery - you & Zac will live with them, we don't. If one size did fit all it would be simple - unfortunately ITP isn't simple. We can share knowledge and experiences (and they will be all over the place) to support informed decisions.

Post often, ask anything and everything, your new family is global. It perhaps doesn't feel like it right now, but your new life is your new normal and it will settle down and you will be in control again.

Praying peace and comfort surround you and Zac.

My first thought is that your husband is getting a lot of treatments at the same time. I know his counts were low, but you can't know what is working if they throw that many at him. How many Rituxan treatments did he have? Rituxan can take time to work....four to twelve weeks. Also, N-Plate is a maintenance drug and dropping after a week is normal.

Try not to rush into the splenectomy too fast. Give the treatments time to work. Splenectomy is not a cure, it's just another treatment that may or may not work.

It's okay to be home with low counts. Very few of us have been hospitalized with low counts, so don't be afraid of that. Look at the symptoms, not the counts.

I agree its different for everyone..i chose Rituximab for my daughter 1x treatment a week for four weeks after the third treatment 199,000..and she has been in remission for two years now..i would not agree to remove the spleen with no platlets..and she had 0 also we tried IVIG Steriods by IV then Rituximab....do yourself and your husband a favor have him checked for H=Pyloric my daughter had it also and was treated for it with the rituximab..ive heard of several cases of ITP patients having H-pyloric too...wont hurt to try Good luck to you and you husband

Hi Everyone,

Firstly, a big thankyou to all of your that have responded to my post so quickly. It was wonderful to read your messages not to mention very comforting and thankyou for the prayers.

Zac's count is 12000 today and God willing, it will be higher tomorrow and he will be able to be released.
He has also tested positive to the H-Pylori (sorry about the spelling). It was negative on the breath test, but positive on the blood test. He has had some antibiotics for it.

I will continue to post with his progress.

Thanks again.
Rach xo