Diagnosed 2 months ago and now pancreatitis

My son is 21 and we are fairly new to the diagnosis of ITP...Started prednisone in Feb. (80 mg/day) and slowly weaned to 10 mg when symptoms appeared again. Never got great numbers (highest was 107) but from reading we had done felt that was a "liveable" number. Over the weekend my son started having bloody stools again and abdominal pain. Seen in the ER and platelets had dropped to 36 and lipase was quite high so they admitted him to the hospital. Back on 80 mg. prednisone and pain meds and now they say he may have autoimmune pancreatitis. Has anyone else experienced this and do they typically go together? !
Once platelets are at least 50 they want to do a sigmoidoscopy and then bone marrow biopsy. Also, next line of treatment for platelets...whether to do the rituxan or splenectomy. We would appreciate hearing your experiences so we can make a wise choice.
Grateful for this group....it's been helpful for us to this point.
Thanks
dak

Hi. I'm sorry to hear about the problems your son is having.

Although ITP and autoimmune pancreatitis together is rare, it is not rare to have more than one autoimmune disorder. If a person has one autoimmune diagnosis, it's not all that surprising to end up with another one. Many people on this Forum have two or three autoimmune disorders to juggle.

Your son does have safe counts. Anything over 20k to 30k is considered safe. As long as he can maintain that, he is doing well. I understand that he will need to get them up for his procedures. Rituxan is a good option, although it can take between 4 to 12 weeks after the last infusion to see results if he is responsive.

Splenectomies do not always work and can fail at any point, even if it seems initially successful. It is becoming a less popular option as time goes on because of the long term problems it can cause.

I would take time to research all the options for treatments. If you take the surgical option it is final can not be undone. I would be getting a definite answer as to whether the pancreatitis is actually being cause by the immune system. itis just means inflammation and many things can cause that.


Most importantly do Research Research Research and remember it is ok to say to the doctor are you 100% positive? Can you garentee? Is there another option? What about this type (insert name) treatment? Can I have a second opinion?

Doctors are great at healing people but ultimately the patient has final say!

Thank you so much for your responses. My son had a sigmoidoscopy today to make sure there isn't anything going on there...he has had bloody stools since first diagnosed. They took a couple of biopsies but thought it looked like a colitis which didn't seem severe (but he is on 80 mg of predinisone right now) Next step is the bone marrow biopsy and then a discussion about Rituxan. He is a full time University student on scholarship right now and an athlete who is sidelined at present. Sports and excercise have been his way to cope with stress of school, work and student life. How do others deal with the stress...I feel this is going to be key in his dealing with everything. Last time his platelets got into the 80s his hematologist okayd him to get back in the gym. Of course, every athlete is concerned with weight and body strength so any tips on controlling the weight gain are appreciated. He is currently following the food regime recommended on this site and trying to limit his salt intake to reduce bloating, but anything else? GI doctor will order autoimmune tests once the prednisone is reduced again.

Anyone out there a 21 yr. male, sports-aholic, with ITP. I'd like to hear your experiences !
dak:) Thanks again for your support...this site has been a God send for us

I have wondered about whether or not to write this...but if one person can learn something from our experience I guess it's worth it.
My son was diagnosed with ITP Feb.13,2013. He passed away May 8,2013 of a cerebral venous thrombosis and subsequent bleed. He was in the hospital 3 times in less than 3 months. Once with acute pancreatic and the last time taken by ambulance with a headache and vomiting. We never dreamed this would be a fatal disease for him. Now I wonder how common is this? Is there anything we could have done that would have prevented this outcome? He complained of a "weird headache" on Thursday evening and was in a coma by Saturday afternoon. They gave him heparin to dissolve the clot which resulted in the bleeding and then performed a craniotomy to relieve the pressure but it did not work. He was an organ donor but some of his organs were not "usable" because of the autoimmune issues he was having. We received results from a biopsy of the colon while he was in the hospital and he probably had Crohn's disease as well. The pancreatitis he had a week before had gone down a little, but they say his liver was showing signs of inflammation during the organ transplant surgery and they did a biopsy there and decided he could not donate to another person.
Does this story sound at all familiar to anyone out there? We are so shocked still at how quickly a seemingly healthy active and extremely bright 21 year old University student can be diagnosed with something so benign and yet die in less than 3 months!
Would love to hear any feedback,
Mike's Mom

I am so sorry to hear of the loss of your son. I can't imagine what a shock this has been to your family. No, there is nothing you could have done. Unfortunately, blood clots can occur at any age and are usually not detected. Do you know if your son was ever tested for any clotting disorders? Sometimes they can go along with ITP.

Just so we don't scare some members, I'd like to point out that it seems as though this was caused by a blood clot and not a spontaneous brain hemorrhage due to low counts. I'm sure ITP complicated matters, but clots can and do occur even with low counts.

Thank you for sharing. I know how hard this must have been for you. He was way too young to have so many problems. My heart goes out to you and your family.

I am so sorry to hear of this. It is particularly unfair when someone so young is taken from us. Your family will be in my thoughts.

Lily