The above title is the condition my 6 year old daughter is in. Her platelets have been dropping bit by bit from the 150k to 51k over the past year. Her doctors are suggesting it might come to a splenectomy, but her GI did also say that it's wholly possible to wait it out and go for a living donor (my wife) liver transplant.
I realize this isn't the usual case for those with PSC, but I'd just like to know if anyone else has had a similar experience?
Thanks in advance for your time!
Hi, I am a mother of a 20 year old son with PSC and UC. He was initially diagnosed with splenomegaly but has had no issues related to that. However his platelets have never been checked. Hmmmm
I hope your daughter is better as I see this post is from last April. Jean
Thanks Jean! As soon as she started Oral Vancomycin, her LFT results improved as did her bowel movements and her platelets. She's steadily improved a bit each bi-monthly blood test, unless she's had a flu, which seems to bring her down.We were told that as the liver experiences difficulty in doing its job, the spleen will compensate and enlarge, subsequently sucking up her platelets. We are going to have a scan done in the next couple months to see how much improvement there has been.
Fingers crossed!
Thanks for writing!
Hi. Wow I am excited to know that you have been prescribed oral vancomycin. How did you convince your daughters doctors to try oral vancomycin? Are you in Calgary? My son started Remicade in November. His doctor now wants to double his dose upto the maximum. Remicade can have serious side effects so I would love to get more information about the oral vancomycin. I hope you will share your story with me!!!
Was vanco generic or brand name?
What form?
Hi Ted, just happened to be cruising by and saw your post. though i would post an input. I had recurrent PSC after a transplant and am on Vancomycin which has dropped all LFT's back to normal. I am using Valeo (which is a generic) and it is in IV (powder) form. Comes in little 500 mg bottles, box of 10. I take it orally(which you can do). The reason for IV and not capsules is the IV form is covered and the capsules not.
Note there is another poster on this forum who has listed the generics that people have had success with. You can find him I'm sure with a search. Prasco was one, can't recall the others.
RJM
Yes, my partners Platlet count has dropped over the last few years from in the 200’s to under 90. It is called thrombocytopenia. Check it out online. His spleen is enlarged, has bleeding from the nose, bruises easily and sometimes has skin rashes and early espophogeal varicies due to portal hypertension. There is no talk at this point about a splenectomy , but his gastro said they don’t need to address the low Platlets until it gets more toward the 50 range. Sounds like you are there, but I was reading that there are other options besides taking out the spleen. Geeze, once it is gone, don’t you wonder about the consequespnces? How does that effect the new liver when she gets one? Sounds like they can do blood transfusions or use other medications before taking out an important organ. I’d research thrombocytopenia and PSC online a bit. Mayo clinic website is a good starting point.