I go back to the hospital on Tuesday and although I am keen to get my test results and see where I am at, I am also a little terrified. I really am hopeful that the Prednisone is still working or will work enough just for my levels to level out to something more stable. Although confident everything will work out fine I also need to prepare for the worst case scenario, reason being is when your levels get too low you have to make split decisions in regards to the treatment you wish to choose. No time to think it over, its go time.
This is why I try to point out that treatment for this condition is re-active, you go to the hospital, your levels get checked and if your levels are too low you are fed a bucket load of information about treatment options and you have to process all this information and make a call. Please note treatment options are either putting horrible stuff in your body or taking important stuff out of your body (eg. spleen). So it’s clearly not a fun decision to make – you have to choose your poison wisely.
My doctor has brought up on various occasions the drug Rituximab as a form of treatment. Generally I have only used Prednisone as the plan was that I would like to keep my options open in regards to having another baby (it’s extremely important not to be pregnant or get pregnant whilst receiving or at least 6 months after receiving rituximab). However it seems “having another baby” is not quite working out (long very emotional story for another day). Therefor I’m becoming a little more open minded about trying this drug.
My doctor has advised me that she believes this drug may be able to give me a bit of relief (apparently some patients have had months if not years of relief from taking this drug). From my observation in regards to reading other people’s results with Rituximab it seems this drug has offered some people relief, it also however has only offered others grief. So I thought to myself ok let’s check the stats on this and so far what I have found is that Rituximab has offered approx. 20% of patient’s relief of at least 3 years however approx. 80% of patients have not responded to this drug or have slightly responded but relapsed and required further treatment.
Therefore it seems good case scenario I may get a few years, bad case scenario it won't work at all and in between it may only give me a bit of small relief. My main concern with taking this drug is what it is going to do to my body, my doctor has advised me that basically what this drug is designed to do is to attack the immune system – therefor it will reboot my whole immune system however in order to reboot something you generally have to shut it down and restart. Meaning I leave my body with a very limited defence system leaving me open to viruses and infection (basically it can take up to 9 months for the immune system to be back in working order). This in itself sounds like it’s going to make life a little harder not to mention the side effects are not something I really want to sign up for.
Most common side effects of Rituximab
nausea
headaches
muscle aches
a cough
sore throat
feeling cold
fatigue
night sweats
skin rashes
low blood pressure
hair loss
runny nose
shortness of breath
vomiting
So I guess you are starting to see my reservations in regards to this treatment and why I’m not jumping head first into signing myself up for Rituximab. However based off my observations and trying to prepare for Tuesday’s appointment I have decided that if the Prednisone does not work or cant at least give me a decent result then I’m going to have to give this Rituximab a test run.
If you have tried Rituximab please comments your results below I'd love to hear from you
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