ITP Update

Hi Again,

It's been a while since I've found the time to post about my status so I thought I'd provide an update and seek some advice on my next steps.

My original post can be found at pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/28189-diagnosed-with-itp-last-week.html

Since then I'd been doing quite well and my consultant had me continue to taper my pred dosage. I was hovering around the 80-90 counts and my consultant was hoping I'd levelled off. For the last 2 week2 we were down to 15mg of pred and I had my last blood test on Monday. Unfortunately my count had halved down to 35.

I met with the nurse yesterday and she explained that my consultant is keen to look at Rituximab as my next option. They've bumped my steroids to 30mg but don't see that as a good long term option at my age. I talked through the treatment and now need to make a decision if it's right for me. I've suggested waiting a week to see what my count is this coming Monday as I don't want to jump at another treatment if I don't have to but it does seem to be the option they prefer. Their view is the increased steroids may bump me up but they expect that as soon as we taper again they could then drop. I'm of the view that I'd like to see if that happens this first time or not.

I'd love to hear from those who've had this treatment about it's effects and whether it might be right for me.

Thanks
Steve

Steve:

Many people here have had Rituxan and had a good result. The average time for remission is about a year for people do do respond. I had Rituxan in 2003 and 2004. The first time lasted about 13 months and I have been in remission since having the treatment in 2004.

The infusions are mostly uneventful. They give pre-meds and I slept through the treatments. I took a book but kept reading the same sentences over and over. Some people have a reaction in the middle of the first infusion and that is controlled quickly by slowing the drip and possibly more meds such as Benedryl.

It does not com without risks though, so reading the manufacurer's long list of side effects can be a good idea. Most people do just fine though.

I did four weekly treatments of Rituxan - last treatment was about four weeks ago. I've had no response...yet. I felt very fortunate that I wasn't hit with any side effects apart from a slightly sore throat the first infusion I got. Like Sandi, I ended up sleeping through most of the infusions - the Benedryl does knock you out pretty good. Once they got the IV in me, I put on a pair of headphones, fired up an audio book and usually woke up about two-thirds of the way through the treatment.

Hi Steven, was actually wondering how you were doing as we didnt see any posts from you.

I think I am in the same boat or dingy as you! Altho I have to say I have had better counts... I shot up to 229 even tho I was tapering and was on 7.5 mg, (originally on 90mg), however today I had a count done and on 4mg its dropped to 109.(in two weeks) I am the opposite to you I want to start something now, but my consultant is saying they need to see if with no drugs you stabilise. They dont want to give me drugs if I dont need them, which makes sense, so I have to wait and see.....
I have a 'thing' about transfusions or drips etc, I would prefer a tablet every day, but thats just me.

I guess you can tell your consultant what you want to try but perhaps always adhere to his advice, I guess it depends on your history or how quick you drop and by how much.

Keep us updated!

Steve,

I just completed my last treatment with Rituximab yesterday and wanted to say my experience was the same as others have posted. Other than being tired the day of the treatment, I didn't seem to experience any other negative side effects.

Mike

Hey Steve,
I am back to the pdsa website as my 3.5 year remission from Rituxan comes to an end. Before that, and the first time I had Rituxan, my remission lasted 4.5 years. Good times. I had no side effects except a flu like condition that lasted 24 hours about 2 or 3 weeks into the 4 week treatment. Happened both times.

Nice to see everyone here again. (Or maybe not, if you are all still struggling, hope it gets better for everyone.) Been a rolly coaster ride the last couple days..... I think I will post my latest adventure in another Topic. :S

Rituxan is historically one of the most common ITP treatments. It has helped many ITP'ers over the years. All drugs have side effects; Rituxan is no exception and the FDA requires the patient to read a so-called "black box" warning before administration. The current warning includes information about immuno-supression in general and HVB in particular, but no longer includes some of the more dire language that was in the warning ~10 years ago.

I have had Rituxan a bunch and other than feeling tired and a little cranky for a day or two, no issues. Some choose to pre-treat with steroids, but I think that has become rare.

Take a book, the infusion gets boring.

Steve (Gort)! So nice to hear from you! We missed you around here!

Thanks to you all for your advice and sharing your experiences. Last weeks count had dropped again down to 22 so for me that was a decision made as it feels like time to try this next step. I'm actually due in the hospital in just over an hour to start my first treatment. I'll let you all know how it goes over the coming days/weeks.

I've been pretty exhausted over the last few weeks which could be the increased steroids or just work which is pretty hectic right now. I get to about 2pm and seem to hit a wall. I feel kind of zoned out and loose concentration. By about 7pm I feel ready for bed most nights.

Hi Steve, wishing you good luck and better blood counts! Hope it goes ok today, let us know how you got on and hoping your counts go up!

All went well yesterday so round 1 done! Felt exhausted when I got home but had a reasonable sleep to get caught up. Hoping the others go as smoothly.

Hello everyone. I wanted to drop by and update you on my current status. I'm pleased to say that as of last week I hit normal (166) counts for the first time since being diagnosed. It was a slow climb after the Rituximab treatments but eventually we got there. During that time I was tampered off of the steroids also so now I'm no longer on any drugs.

Besides headaches I didn't have too many bad effects from the Rituximab. I did have some chest pains when breathing and a fast heartbeat a few days after the first dose. I was checked out and had various tests (Xrays, ECG and blood tests) to rule out heart problems or a clot. It seemed to sort itself out after a few days.

I feel a whole lot better since the doses reduced. I suffered from a bad run of daily headaches over Christmas which was a shame but otherwise it wasn't too bad during the taper. I now sleep more regularly and don't hit walls of tiredness during the day.

The consultant has okayed me to stop my blood tests for 4 months and just monitor myself for symptoms. Finger's are crossed I'm over it for a long while. At least it seems I do slowly respond to Rituximab so I have an option if things take a turn for the worse.

Thanks to everyone who responded to my posts with advise and support. It did help greatly having knowledgeable people with personal experience of ITP to turn to.

Steve - great news! Thanks for the update. One more story that shows that things generally will turn around in time. I'm happy for you.