Hi my name is Jazman, Im 27 years old &I've been living with lupus & ITP for 10 years. At rhe beginning my ITP wasn't bad but now ive gotten as low as 8k. The retuxin did well with my platelets last year but I had an allergic reaction to it this year so my doctor switched me to IVIG Immunoglobulin which didn't work at all. So the next step was the splenectomy. My surgery is scheduled for tomorrow but I'm thinking about rescheduling because I'm confused on wether I'm making the right decision or not. Can someone help me please!!??
Welcome Jazman. Only you can answer if surgery is the right choice for you, but it sounds like you haven't really evaluated all of the options that are out there for ITP treatment. Lots of old school hematologists push patients into splenectomies without offering all of the options available. Good hematologists don't use splenectomy as a treatment option after trying a lot more things than just Rituxan or IVIg. Rituxan is a good treatment for lots of people, and it sounds like it worked well for you the first time around and gave you a year of remission. Others can talk about allergic reactions and how they manage those... I think someone is managing an allergic reaction of hives by doing a very slow infusion with allergy medications. You can search and read about that in another thread.
Regarding IVIg, this is not really a "treatment" for ITP. Some people get an increased count from IVIg, but even those that do usually crash back down a few days to a few weeks after the infusion. It is not a maintenance treatment, and people use it as a rescue treatment when they need to get counts up for other reasons (upcoming procedures, stopping bleeding, other rescue measures).
The main modern ITP treatments are Promacta (Eltrombopag) and NPlate. It doesn't sound like your hematologist has even offered one of those. Some people can also get responses with steroids (how is your steroid response?).
I had a splenectomy done more than 30 years ago because we didn't have many ITP treatments available when I was a child. It didn't work for me and I have to manage my ITP as well as potential complications of splenectomy (need for Pneumonia immunizations, having to be ULTRA careful with any fevers because sepsis is a big risk, higher risk of thrombosis and clotting events, etc.).
Some people do okay with a splenectomy and can achieve a remission for varying amounts of time (months, sometimes years). For others it doesn't work at all and you just end up removing a healthy organ. There is never an urgent rush for a splenectomy, so don't let any doctor try to push you into it. You should take your time and read and be convinced that you would rather do a surgery than try some of the many other treatments available. If your doctor is pushing you that it is urgent, then you need a new doctor. By the fact that your doctor is doing this after only trying Rituxan, it sounds to me like he/she doesn't have a lot of experience with ITP and is not up to date on current treatment methods.
I hope you can reschedule/cancel the surgery until you can make a more informed decision!
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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Hi Jazman. I have both Lupus and ITP (in remission right now) and personally, I would not have a splenectomy having Lupus. For one thing, having Lupus causes the body to have a lot of inflammation and cells die much quicker (apoptosis). The spleen acts as a filter to clear all of that out which can help with inflammation. Secondly, the thought of using strong immunosuppessants while being asplenic always scared me. I've had to use CellCept, Imuran and Methotrexate over the years. I was glad that I had the extra protection of my spleen because those drugs really weakened my immune system.
You do have other options to try and I think a good next step would be to get a second opinion from a new Hematologist. It's your decision, but if you are having second thoughts, don't go through with it until you are sure that is what you want.
Jazman, I see time is of the essence here. Let me pile on and try to reinforce what others are saying, but adding another angle to it.
There are a number of folks here on PDSA who have a flat line IVIG response - counts go up for 2 or 3 days at best. Perhaps that is the case with you? Many of these folks have achieved remission after being on either Promacta or Nplate for a few months. Just a FYI....
Hi Jazzi~ good that you checked in here, there is a lot of up to date information and very smart people! I also have ITP (10 yrs) and now Lupus (diagnosed last year). I have my spleen, I don't know everything it does but I just feel its an important part of the immune system. You never know where Lupus will take you. I have refused splenectomy many times with several doctors. They don't always like saying NO to them but will get over it. There is no urgency to removing the spleen and like others have said- many other current options. People have gone into remission from the TPO drugs (Nplate, Promacta), they are drugs especially designed to treat ITP. I am currently taking Nplate weekly injections, it has no side effects for me and works well. Other people like Promacta which is a daily pill.
Do you have bleeding issues? Many people can live with low platelets. Mine have been down below 10K many times- as low as 1K and I have no bleeding problems. I prefer to have my counts above 20K to be safe, but its not a crisis when they drop down. Some people do have bleeding issues, so you have to get to know your own body. I have had many nurses react to my low counts as if it were a medical emergency, but my hematologist knows I am okay with low counts. By the way, he is my third hematologist and the very best! I was afraid to leave my first doctor, afraid he would be mad. hah Now I know better, you have to find a good fit. And you really have to stand up for yourself with ITP. I've never had to stand my ground with doctors so much in my life as I have since I've had ITP. But thats good, I'm more confident for it. Its YOUR spleen and your body, you can take as much time for your decision as you like. Also people cancel surgeries all the time. I once got in to surgery earlier because someone cancelled on Friday the 13th. Good luck with whatever you decide!
My ITP responds well to the Decadron but my doctors didn't want me on a high dose of steroids so that's why they suggested the surgery. I have an appt to see another hematologist to get a second opinion & I will mention the medicines you listed. Thank you!!
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