Starting treatment with Rituxan

I was diagnosed with ITP in 1999 and have been treated with Prednisone a few times over the past 15 years. My platelets were holding between 80-120, but recently tumbled to 16. I spent six days in the hospital and received mega steroids and IVIG. Platelets were 179 when I left the hospital and 140 a week later at Doctor's visit. My hematologist is recommending Rituxan, but I'm a little nervous about it. My Doc said it could help keep my platelets up for a longer term and also benefit my connective tissue disorder. I did consent and will start treatment on Friday. I would like to hear from someone with a similar experience and also learn more about the experience with the Ritiuxan treatments.

In 15 years you have only needed steroids a few times. Now your platelets have responded again to treatment. (Btw, did the steroids not work making the IVIG necessary, or did they treat with both from the start?). Most people on Rituxan don't get more than four or five years remission, if that, so what does your hematologist hope to gain?

A count of 16 does not seem serious enough to hospitalize... unless you were having symptoms of bleeding.

You did not give enough detail for us to help you factor in your connective tissue disorder. Is Rituxan considered an effective treatment for that disorder? If your symptoms are serious enough, that could tip the scales toward treatment.

Is there a chance that your counts could just settle back to where they were? If so, I'd consider holding off on Rituxan. It doesn't always work and the average time that it lasts is a year, although some people have had four or five years.

It's a pretty heavy duty treatment. Most people have no side effects though and usually sleep through the infusions. The one thing that I have noticed over the years is that people who have Lupus or other inflammatory disorders tend to get serum sickness (side effect) from Rituxan much more often than people who do not. I did get serum sickness due to Rituxan (8 years ago) and in my case it triggered Lupus and inflammation that never went away. This may not happen to you, but you should be aware of the possibility. I sound like Chicken Little, but it's better to be aware of possible side effects. Serum sickness usually occurs 14 to 21 days after the first infusion.

My platelets dropped to 14 after steroids were started so the IVIG was recommended. Platelets had never taken a dive like that before. Dropped from 60 to 16 in a month. So my Doc was concerned they would continue to drop. Signs of bruising but no bleeding. After being diagnosed with ITP, I developed a severe joint aches and was told I had a high inflammation rate. Was never diagnosed with RA, but with mixed connective tissue disorder. Have since developed frozen shoulders and swollen joints in my hands. Doc says Rituxan could also help with these issues. It sounds worth trying if it can possibly help both conditions. It's been a roller coaster ride over the past two weeks, but I'm ready to give this a try.

Bgshy,

I was diagnosed with ITP back in 1998 and was stable in the 80-90 range as well until August 2013. I started treatment with Prednisone at that time which helped initially, but I couldn't taper below 20 mgs daily without a drop in my counts. After much discussion, I had 4 Rituxan infusions over the month of October 2013. As Sandi mentioned in her post, I am one of those people with an autoimmune inflammatory disorder (Lupus) and had a serious reaction after my 2nd Rituxan infusion. I did a Dex Pulse, my symptoms got better, and I did complete all 4 infusions. It took a good 6 weeks for the Rituxan to "kick in" and my platelets have now stabilized in the 110-120 range. I am now down to 5 mgs daily of Prednisone (hoping to taper off completely soon).

I have had some residual issues following my reaction (which I think was serum sickness) such as joint pain, fatigue, and rashes and I'm currently trying to find a treatment for this. I started a thread about a month ago regarding Rituxan reactions as my rheumatologist believes my residual joint pain, etc. is directly related to the Rituxan while my hematologist believes the Rituxan brought on a Lupus flare (my inflammation level is very high). Regardless of the reason why, since having the Rituxan infusions, I've had some residual issues.

I don't want to discourage you from doing Rituxan - I tolerated the infusions fine except for a mild headache and low grade fever after each one - and it did help my platelet count. But if you have a connective tissue disease, you may just want to consider the possibility that Rituxan could cause other unwanted side effects.

~Lauren

I should mention that serious eaction/serum sickness after my 2nd Rituxan infusion did not happen immediately. It occurred 4 days post infusion. That is why I mention that I tolerated the infusions well (had them first thing in the morning and by evening had a slight headache and low grade fever which was gone by the next day).

Right, serum sickness does not occur during the infusion. I had it twice, and both times woke up in the middle of the night unable to move due to the joint pain. I'm pretty tough, had 3 children with no meds at all, and this was worse than that was. I never got back to my pre-Rituxan health and have just continued to go down hill since.