It's been a long time. . . . .

Hi everyone,

I've been a long-time reader here. I was diagnosed with Lupus in January, 1995 and ITP in May, 1998. I also developed TTP in October, 1998 and was treated with plasmapheresis. I was in "remission" for 5 years with normal platelet, hemoglobin and RBC counts. Then, my platelets dropped, BUT, held steady in the 80-90 range and required follow-up but no treatment.

This past April, I had a CBC done for my rheumatologist and my platelets were 72. I posted here at that time because my rheumatologist felt strongly that I should start treatment to bring my platelets up. My hematologist has always maintained a "No treatment until you drop below 50" method which I 100% agree with. So, I respectfully declined and my rheumatologist understood. His concern was that my counts were on a downward trend.

Well, I guess, in retrospect, he was correct. I saw my hematologist yesterday for my routine, every 6 months appointment, and my platelet count is 28. I began to suspect something was up earlier this week - I had lab work on Monday for my iron studies (I'm iron-deficient, too) and bruised immediately. Also, I noticed my gums bled both Monday and Tuesday after brushing my teeth.

So, while I wasn't completely shocked when my doctor came in and said my count was 28, I was still really upset. It has been 15 years since my counts were that low and I neeedd treatment. I am so disappointed. My hematologist, who is wonderful, said how sorry he was, and at least that made me laugh. I told him he had nothing to apologize for - it is my crazy body that did this!

So, back on prednisone. My most loathed drug in the world. I have horrible side effects (as I'm sure you all do) from this drug and I really dread taking it. My hematologist does know how the prednisone affects me, so he is starting me on 40 mg daily to start. If my counts respond, that is great. If not, he said I am a perfect candidate for Rituxan especially considering my history with Lupus (apparently Rituxan has shown to help with other autoimmune diseases as well). He actually wanted to go the Rituxan route initially, but said the insurance companies are notorious for not approving that treatment unless you try something else first. Ahh, gotta love the insurance companies dictating your course of treatment.

Back in 1998, Rituxan was never mentioned to me (don't even think it was being used for ITP treatment back then) and I've googled it. I'm a little uneasy about the possibility of it, but will do what I have to do. I've noticed many of you have had a good outcome with treatment of Rituxan. Did you have many adverse side effects from the infusion?

Many thanks for listening.

~Lauren

Hi Lauren
Sorry you are back on the prednisone.
I had 4 1/2 year remission on rituxan. I was very anxious about it the first time, I was pre treated with benedryl, Zantac, and I was already on prednisone. I had some chest pains that were determined to be stomach/reflux related plus I think I was overly worried.
I did fine with the next 3 infusions. It was not too bad.

During my next round of rituxan after the 41/2 year remission, my worst problem was kindle failure so I would have had nothing to read during the long 5 hour infusion. Luckily a nurse called amazon and was able to fix the kindle

Lauren,
Hate to see you back, but you have come to the right place! We all know what you are going through! I was diagnosed in 2009 with ITP and underwent the wonderful rollercoaster of prednisone, the taper, the ups and downs, etc. My counts wouldn't stabilize on their own and I was totally dependent on the prednisone to keep my counts up. Like you, I had to look into other options because a life on prednisone was not gonna work for me! My hematologist agreed and we started looking into other options. I stayed on prednisone for a few months while undergoing the rituxan infusions. If there was ever a person on here to advocate for Rituxan, it would be me and Dru. Like Dru, I had a wonderful 5 year remission from the drug and was even given the elusive 6 month check in appointments! They were great! I just recently came out of my remission due to a viral infection. My platelets dropped to 97 and a preventative measure, like your hema, mine did not want to just sit by and watch them fall. So, I am back on the prednisone taper as of right now and checking weekly. My counts are responding great, so I a praying that they will stay high once I am weaned off...however, like all of us ITPers know...you just NEVER know! That's the worse part. If I get to the point where I need to seek further treatment, Rituxan would be, hands down, my first choice. It was a long infusion (5-7 hours), but I had zero side effects. Since I have joined this forum, the research just keeps pouring in about Rituxan. About 6 years ago when I first treated with it, there weren't too many people who had tried it. Now, it seems like that is one of the first lines of treatment if everything checks out ok and you are approved for it. As with all treatments for any disease, there are risks, but the research, results, and remissions, you just can't ignore.

I know how you feel about feeling devastated about coming out of your remission. 15 years is a long, long, long time! I was devastated over 5 years. But, you know what, who is to say that you won't go BACK into remission for another 15 years? That is the craziness of ITP and other autoimmune disorders. I think if we could all just relax, not worry, and have a magic 8 ball we would all be ok. But, alas, that just isn't the case! Keep your chin up and be positive about it. You'll be ok and you'll get through this again! You have us to turn to as well!

Hi Lauren,
I'm pretty new to this being as I was diagnosed last year. The first thing I tried which was Prednisone was a complete failure and then they tried Rituxan. I've been fine ever since with my platelets being in the normal range. I had no side effects. It was scary for me but made it through. I think my husbands insurance was the same way, I had to try steroids first before they would approve the Rituxan.

Dru, Natalie, and Kim,

Thank you all for your kind replies. I thought a lot about Rituxan over the weekend - especially since the Prednisone-induced insomnia has reared its ugly head - and I *almost/kinda/sorta*, hope that I don't respond fully to Prednisone and my hematologist can get the Rituxan approved. The more I read about it, the more I think it could be a great treatment option for me.

I'm already over the Prednisone - I just feel awful taking it. I didn't even feel awful last week before I found out my platelets were low! Between the insomnia, frequent urination, sweating, heart palpitations, and loss of taste (am I the only one who loses the sense of taste when taking Prednisone?), I am just miserable.

I'm so glad Rituxan worked wonders for all of you and I'm sorry, Natalie, that you have had a recent relapse as well. But I'm glad you are responding to the steriods and getting your counts up. I know that doesn't always happen for everyone!!

Lauren,

You might have to stay on prednisone for a little while, tapering slowly during the time you are doing the rituxan treatments. Rituxan can take a while to work..up to 12 weeks. But it is easier being on prednisone knowing you will be off soon.

I'm on 20 mg of pred now and having insomnia and it (or something) is bothering my stomach..bloated and uncomfortable.

LaurWinn wrote: (am I the only one who loses the sense of taste when taking Prednisone?)

I did too. I thought things tasted of cardboard. Although some savoury things tasted of salt and some sweet things of sugar. The only thing I enjoyed eating was melon and I ate loads of it. I lost weight while on steroids so afterwards I thought it wasn't really a bad thing in the end.

LaurWinn,
When the time comes, Rituxan will be my number one. I responded so well the first time, that it seems like a no-brainer. Hopefully it will be amazing the second time around for me, as well. I am laughing hysterically at the cardboard comment...I WISH EVERYTHING TASTED LIKE CARDBOARD TO ME! I want to eat the wallpaper off of the damn walls on this stuff! hahahahaha! I haven't gained weight though....YET! I'm sure that will change if I don't get these damn roids tapered off soon!

Just wanted to give an update:

After my first week of 40 mg Prednisone, my count jumped from 28 to 179. I was thrilled and my hematologist told me to taper to 20 mg Prednisone. Well, its been 6 weeks, and I haven't been able to taper any further. My counts are holding in the low 50's. After my count last week, the nurse told me to stay on the 20 mg of Prednisone, but it is time to consider Rituxan. I see my hematologist on Wednesday where we will discuss my treatment plan. The office staff were calling my insurance company last week to get approval for Rituxan. I, of course, am hesitant.

I've read about all the possible side effects, including the rare possibility of PML, an untreatable brain infection. I have Lupus and I wonder how Rituxan will affect that - if at all? I worry about the fact that Rituxan lowers the immune system - with fall and winter coming up and a 4 year old in preschool, I can only wonder what possible infections/viruses I might get. And I also read that I can't even get a flu shot while undergoing Rituxan treatment.

I know many of you have had Rituxan with little to no side effects, but quite frankly, I'm just really nervous. To complicate things, I have a planned vacation to Florida in 10 days, so I can't even begin Rituxan until I return. I hate having something like this looming over me. It will be on my mind during my entire vacation.

I had a feeling I might get to this point, but I'm still apprehensive about it. Wish me luck!

Laura:

I understand the apprehension about Rituxan. It is not a treatment to be taken lightly. Most people do very well with the infusions though and don't have any problems. There are studies that suggest that using a lower dose or only having one or two infusions may work just as well as the standard dose, so you could discuss that with your hemo.

www.haematologica.org/content/93/6/930.full

As far as how it would affect Lupus...some studies have shown that it can help Lupus symptoms and some studies have stated that it does very little. In either case, it hasn't been known to make things worse. I have noticed though, that some people with Lupus who have used Rituxan seem to have more problems with certain side effects, such as hives or serum sickness. That is not true of everyone, so you might be just fine.

As far as PML, that is a very scary illness, but it is a possibility with any immunosuppressant, including steroids. People are more prone to PML if they have a low immune system due to chemo or other strong immunosuppressants.

I didn't get sick any more often after Rituxan than I did before. You still have a pretty intact immune system even after Rituxan....it won't wipe you out completely. No, you shouldn't get a flu shot, but the vaccine only protects against a few strains of the flu anyway. A flu shot does not guarantee that you won't get the flu.

Try not to stress over it. People are monitored very carefully during the infusions and the pre-meds make you pretty sleepy. I slept through mine and thought they were pretty uneventful. Enjoy your vacation and try not to think about it!