Rituxan/ immuran

[nancylee]

( thanks for the help finding New Topic)

So, I am starting Rituxan again tomorrow. the immuran didnt do what it was suppose to do. This is my second set of infusions with this, however i will not be on high steriods and plasmapherisi. ( plasma transfusions)  Has anyone just had Rituxan with nothing else/ and how did you react? How is your success? and labs?

Nancylee

[Sha]

Hi Nancylee~

I don't take either, but wanted to see if someone might be able to help answer this!

Sha

[gurs]

Hi Nancylee,

Ive had several infusions of Rituxan over the years, but always been on daily prednisone (10mg) and now some medrol in the last year.
Ive had different types of reactions with each infusion over the years. I know the pre-meds are extremely important, as well
as doubling my infusion time...9 hours I think was the last. Its well worth the wait believe me. I also make sure the doc gives me
plenty of saline throughout the entire infusion for extra hydration. I really didnt seem to feel any better and my labs didnt change, but
now that its been along time since my last, May 2010) im having flare after flare and think it may have helped with those. Im debating what to do now.
My t-cells and immune system is so low, dont really want to chance this, and my docs want me to do plasmapharesis, which scares me to death...
I tried a few rounds of IVIG and had horrible reactions to this too..... my hematologist told me that he has good luck doing Rituxan
in 4 lower dose weekly infusions, rather than the two-bi weekly ones...ohhhhh, wish i had some answers..such a crap shoot with all this.
Have you had plasmapharesis?

Let me know how it goes  and if you want to PM me too...good luck

Gursie

[nancylee]

Wow! tell me, why do they want to do plasmaphersis on you? You must be a mess!! ( from one who knows. ) Yes, I had plasmapheris. I was getting daily transfusions. They last about 4-5 hours depending on how fast they can replace your plasma. I was IN the hospital for 2 months then I went in as out paient for about 6 weeks for plasmaherisis. I was on HIGH HIGH doses of preginone 120 mg daily. I had 2 IVGG transfusions and had no reactions.  And rutuxan. I had a few reactions but nothing too horrible except fever, chills, bone leg pains ad some vomiting and feeling like I was GONE. I have always hoped it was the plasmaphersis and sterods that created such problems.  Monday I started anotehr round. They were not sure they would start the ruxitun as my WBC was 1.7 and platelets were 98,000. my sed rate was 80. and i was showing shattered red blood cells. ( systisites) sp.. as well as every other test being eitehr high or low.  FUNNY STORY.  everyone knows I get a copy of everything I do. So, after the blood test they come in and handed me my results. I looked at teh first 6 normal readings and handed it back and said THIS ISNT MINE. It wasnt....!!!  that night I had a high fever, chills and such bad aches..
If you do the plasmasphersis, they will install a central line in eitehr your neck or your groin. MAKE SURE THEY DO YOUR NECK or you will never be abe to shower and clean your junk. Make them give you verset to put you under. Its installed in your jugular. THEN seriously consider a pic line. they will be stabbing you every day at least 4 times a day. After a few days they finally gave me one. ( installed) and life because easier. The plasma pherisis process is.... how can i say this without scaring you... BARBARBIC!!!! they drain all your blood out, process and remove all your plasma and replace ever bit with other poples plasma. How can you NOT become a different person?? I asked if this ultered my DNA and they said no but I am not sure of this.
What else do you want to know... ? PS every single day before I go to work I stop at the hospital and they do a STAT CBC on me. I have a suitcase in the car with all my stuff. i have to wait 20 minutes to see if I go to work or get admitted.. Hopefully I will talk to you all later from my office.

[Linda196]

Nancylee, I'm so sorry you had to deal with such a rough treatment, but, as a former Plasmapheresis nurse, I can guarantee you that not all treatments are so barbaric.

The equipment we used was a continuous exchange loop, meaning that the blood was drawn continuously at a rate equalling the rate of return of plasma and the patients own red cells, so at any given time, only approximately 100-120 ml (depending on the type of tubing set used) was outside the patients own circulation.

In 8 years practice, having personally delivered over 500 treatments, trained 4 other nurses, and supervised many more treatments, our patients experienced only 4 serious reactions which required early termination of the treatment (2 were blood reactions, 2 were determined to have been caused by the patients underlying condition). There was a fairly regular presentation of chills and circumoral parathesis (tingling around the mouth) caused by shifts in Calcium levels, and we treated very proactively for that, many of our patients only experienced these with their first treatments and we learned enough about how they reacted to treat with Calcium aggressively before the next treatments.

Many of our patients were outpatients, and they napped or chatted in their recliner during the treatment, and walked out following it.

You do raise a very good point about the "plumbing" Our best arrangement was a triple lumen embedded catheter placed usually in the blood vessel under the collarbone, allowing the neck to remain free and the patient could completely cover the catheter with clothing. the third lumen allowed for blood sampling in the same way as your PIC line.

Just as a note, if our TTP patients didn't respond to Plasma exchange only, were treated aggressively until their platelets maintained a level greater than 60 for 3 days without treatment, and then they had a splenectomy. All of them responded well, and the TTP resolved completely.

[nancylee]

Linda, I am sure you were the BEST of the BEST and with all due respect , I was on the receiving end of the treatment and I can tell you that I shivered through most of the treatments, had a few reactions to the plasma, coded once and when I was done with every treatment, about 20 minutes after I was unhooked, I was worthless and a limp noodle and needed to sleep. You make it seem like it was a soft and gentle procedure. Its not. I dread every day I may have to be hooked back up on "the leash". The women who administered the treatment have all become pretty good friends.  (except one) nurse that was always trying to rush through the process and I was constantly telling her to slow it down.

I brough up removing my spleen many times. My hemp/ onc/ rhu were all against as THEY said (Cleveland clinic confirmed) with my autoimmune issues and IVGG and immunsupprants, they would be more concerned with infections and death.

I was treated aggressively. I went in with a platelet count of 4000 (and dropping) and a LDH of 2800. Along with all the other autoimmune issues. They tried IVIG, steroids, rutuxan and my platelets would not go over 11,000. They finally released me when I hit 120,000. ( figured this was MY normal for now on) I haven't hit 150,000 in 2 years.

with all this being said... I probably shouldn't try to scare this poor woman. I lived through it.  Alot of positive things came from it. ( friends) and I will do it again if I have to.

You know, they have a TTP site on Yahoo. You could really be an asset. I stay away from it because it scares me. There are a lot of chronic relapser's.  VERY few of them have had their spleen removed. But you will learn fron this site that NO ONE is the same after this treatment. It changes you physically and emotionally. I know it changed me.  They need to do a long term follow up study on the behavior and physical conditions of the people who had this treatment.

I use to be nice.

[nancylee]

Hey Linda. I re-read my post and I think it came off as sounding pretty rude. That was NOT my intentions at all. You have been the sweetest and most welcoming person to me.

You can tell me off if you want. I will happily take that. ( Do I need to answer the question if I need medication?)

[Linda196]

No problem at all, Nancylee....this site is all about sharing experiences, good and bad. I just wanted to show the flip side, and yes, I was speaking from the other side, not having personally experienced the treatments.

As far as long term follow up goes, I can only speak from personal relationship with our patients, and I haven't worked since 2003, but I'm still in touch with several of my patients, one in particular who had 67 treatments during the summer of 1998, and she, and most of the others (some of whom are still receiving treatment on a weekly or monthly basis, mostly for neurological conditions), are all feeling stable and improved over their conditions that lead them to Plasma exchange.

Granted we have experienced losses, but considering that many of our patients were seriously ill when they came to us, that is unfortunately to be expected.

When I started training for Plasma exchange, I had an ulterior motive.....I've had autoimmune diseases since I was 20, and at the time was being diagnosed for dermatomyositis. I had hopes that the treatments I was learning about would be of benefit to me in the long run, and have asked my various doctors about it several times, but Canadian Apheresis Standards council hasn't approved the treatment for any of the conditions I've been diagnosed with. Because I am naturally at risk for ITP (similar to TTP but totally autoimmune ) the option is there for treatment if I need it, and my hematologist has told me that, if my gammaglobulinopathy advances to the point that my medications do not provide adequate control and kidney protection, he will apply for a research project for an experimental treatment.

[nancylee]

You are in Canada? I have always wondered about health care in Canada for this issue. I have been a resident of Quebec City, Edmonton, and Vernon BC. I love Canada. My oldest son was born in Quebec.

[gurs]

Thank you both....for giving me some insight. Everyone seems to have different experiences with everything dont we? amazing.....you really have to find people that know what they are doing. I know from having different infusions at different hospitals...the outcomes are all different. Some nurses can be the sweetest things, but still not know quite what they
are doing, or perhaps they were trained differently.

I'm learning to trust my gut and go with the flow I guess. Like I said in many of my posts, we dont have many options when we are severly ill and nothing else seems
to be working.  I got super sick a month after my last rituxan and still not sure if it was the cause, because I never was THAT sick before and Im still not doing much better
and it has been around 8 months. I need to do something quick. I lost so much weight, hair and my neuro issues are getting worse day by day. Its very scary.

Im still afraid of the plasmapharesis..but, will talk with my docs more about it too.  My docs say it can be life-saving. Wonder if it cleans infections, yeast in the blood as well?

Nancylee...sounds like you have been through the ringer and then some-wow girl!!!! Linda-thanks for all your info as well.

Gursie

[nancylee]

Gursie, I am so sorry I scared you about the plasmapheris. That was so stupid of me. I will do it again in a second if I needed to. And everyday its a possibility. I dont know if the blood exchange can clear an infection.  Your doctor will know what you need and there is a reason for the decision to do plasmaphersis.  this proceedure has to be approved as a viable life saving decision. You probably wont hear this from me again, but I was WRONG!! ps if any pof you tell my husband I said that I will be so mad..!!!

tell me what happened to you with the rutuxan? how were you sick??

[gurs]

No worries Nancylee, I appreciate you telling me your experience.  Like many of us, my body doesnt seem to want to tolerate anything. Any of these treatments are a gamble,
even IVIG, etc.  We need postings here with the positive and negative too!!!

My last Rituxan infusion I did ok..actually, felt good right after, prob because of all the medrol I had running through me. About a month later, I felt like I was having a SS/Lupus
flare..but kept getting worse. My entire left side was numb, and I had killer headaches, couldnt walk, talk, just hard to me..stomach pains, no appetite, etc.  I thought
I might have had a stroke..went to ER and they did all the testing, MRI's-cardiac, etc and nothing!!!! I thought for sure something was wrong. My neuro came in and I told
him I was scared about having the PML virus thats associated with Rituxan, lupus/SS, and I also have hardly any T-cells..he said No, from the MRI, no indication of this and he
said I would be able to move. Anyways, this went on for at least 3 months and Im still not feeling good. My other docs I talked to dont think it was from the Rituxan, but
rather my autoimmune taking over my body??? who knows...2 years ago last May I had my 2 infusions, and felt pretty good after?
My docs dont really want me to do the Rituxan because of my immune system, but not sure what else is left? I would like to do the 4 weekly, lower dose infusions to see how this works. My hematologist uses it alot and said its more effective this way?

Im also having a hard time dealing with hormones and menopause. I never had any issues until after my hysterectomy 4.5 years ago.  I think my low dose estrogen
might be a problem as well.....anyways, thanks everyone

Gursie

[nancylee]

My Hemo felt the exact same way about the smaller 700/ 4 week infusions instead of the 1000 2 week they do for lupus.  For one thing; you get more. And for another thing, its easier on your body I would think. Who know since I have never had the 1000 x2.

I think I am through menopause. This roll around my middle is proof of that!