Friday, May 24, 2013

Update

Apologies to anybody who has been wondering how I was doing and if the Rituxan was working. I figure I owe an update. I had a very rough winter and was sick pretty much constantly. Either with colds, stomach bugs or then the actual flu in January. The flu really knocked me on my ass - haven't had the flu since I really don't remember. Luckily nobody else in my house had it but it caused a huge crash. Almost as bad as when I first became ill - was crawling across my house because standing was not an option. It really bummed me out because I felt like if the Rituxan was working I should not have been experiencing such a crash.  And really, by being sick for months it was very difficult for me to tell if the Rituxan was working as intended because I felt so horrible that I was not able to try and do anything to test my endurance or energy envelope.

I was supposed to get a 4th round of Rituxan in February but the night before I was slated to fly out my daughter became very ill and I had to cancel my trip. I was extremely stressed because my Dr. was leaving the country for a while and that meant I was going to have to wait until April. During the down time I had before April I really did some soul searching about this whole experience. I finally came to the conclusion that whatever benefits I was seeing (if any) were not worth the side effects and risks involved. So I have decided that my run with Rituxan is over. I've had 3 rounds and it's been 9 months since I started. And for me it seemed to cause much more problems than offer solutions. I may have had less orthostatic intolerance but I think it definitely contributed to me getting so sick over the winter and it also caused all sorts of pain for me.  I think I really struggled with deciding what to do because, as someone with an illness that is not going away, I wanted to do something. Just to feel like I was doing something about it. But again, for me, it was not worth the side effects nor the risks. 

I hope I'm just in the minority on this and that this pans out to help more people because God knows we all deserve some relief and another chance at the lives we left behind. I know that Enbrel is next on the Norwegian's list. Frankly I have no desire to be a guinea pig again right now even if I could persuade my dr. to prescribe it.

Do I regret trying Rituxan? No. If anything it's allowed me to come to grips with the fact that I have literally tried EVERYTHING I can and right now I'm just trying to settle into this illness and enjoy my life the best I can. That does not mean that I'm giving up but it does mean that I'm not lobbying my drs at the moment to try anything new and crazy. I think my body deserves a break after what it went through these last 9 months. It's frustrating as hell that everyday it's something new and at times it is overwhelming but I also know that there's not much I can do about it at the moment.  I can only pray that some answers are on the horizon for us all.

10 Comments:

At May 24, 2013 at 8:26 PM , Anonymous Anonymous said...

Hallo Dsdmom,

I am extremely thankful that you posted this last blog and have written an honest conclusion of experience with Rituxan.

It must be very disappointing for you, but at least you can say you have tried. I also think you made the right decision to stop.

The fact that you had an increase in infections tells me what I have researched and suspected: ME patients who are immune suppressed will have to deal with the re-activation or re-infections; most probably due to the fact that Treg cells are decreased with the treatment of Rituximab.

But it can be that you will still feel a positive effect later on, once the co-infections are decreased.

If you do, let us know !

Take care

Anushka

 
At May 24, 2013 at 10:37 PM , Anonymous Anonymous said...

Thank you so much for your bravery in trying a new drug and for the extra bravery of reporting how it went.

It adds insult to injury when we are so sick and something that is supposed to help us, instead leaves us sicker than before.

Really sorry to hear how you suffered over the Winter. Hope you feel better soon.

 
At May 25, 2013 at 1:14 AM , Anonymous Anonymous said...


"most probably due to the fact that Treg cells are decreased with the treatment of Rituximab."

Sorry, meant to say increased of regulatory T-cells(which are immune suppressive)

I also hope you feel better soon!

 
At May 25, 2013 at 10:16 AM , Anonymous Rachel said...

Thank you for telling us. I kept checking this blog over the months and wondering about you.
I think you made the right descision and for a lot of us who can not try the drug and don't know much you have helped in sharing information about how you felt. Best Wishes -Rachel

 
At May 25, 2013 at 3:45 PM , Blogger Dsdmom said...

Thank you everyone for your kind comments. I wish Rituxan was the answer for me, but I guess it just goes to prove, once again, that there is no one answer for all of us. Onward...

 
At May 27, 2013 at 4:21 PM , Blogger Lee said...

This comment has been removed by a blog administrator.

 
At May 27, 2013 at 4:23 PM , Blogger Lee said...

Thank you so very much. You are a braver soul than I. I've been considering Rituxan, as well as Ampligen, but it is rather daunting to be expected to pay large sums of money to be an experimental test subject along with all the attendant health risks.

Hemispherx flat out won't provide Ampligen without payment and Genentech may donate the Rituxan but requires that requests be initiated by the doctor. And the doctor in question won't deal directly with insurance companies, thus considerably complicating matters for his patients. I guess he prefers patients and charitable donors who show up with bags of cash.

Hope you are doing ok and thanks again.

 
At June 13, 2013 at 11:17 PM , Blogger Rachel said...

I got way worse from Rituxin too. I regret it mainly because I wound up hospitalized with a super rare infection and innumerable lung lesions, I now have severe nausea and irregular heartbeats since starting Rituxin a year and half ago. I'm pretty bummed too. Good luck with everything.

-Rach

 
At June 13, 2013 at 11:58 PM , Blogger Dsdmom said...

@rachel, so sorry to hear you did worse with rituxan. How many treatments did you have? When was your last treatment? And are the lung lesions related to the infection? Sorry for all the questions....

 
At June 14, 2013 at 8:57 AM , Blogger Lee said...

Rachel,

I'm so sorry to hear this. The more I learn from the experience of others, the more I am convinced that I should curb my desperation-driven enthusiasm and wait for results from current clinical trials. It may be small comfort, but your courage and willingness to share your experience is of great service to others. Thank you, and please get well.

 

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