Anyone else have problems with Rituxan like me?

Sparkyz
Sparkyz Member Posts: 17
I have completed Treanda+R in June and am now on Maint. every 3 months for 2-4 years. I have had terrible reactions to Rituxan. Ever since the first session I get terrible hives, flushed and back pain. I know for many this is normal the first 1-2 sessions but my reactions have never gone away. By the 3rd session I went into A-Fib and was hospitalized and now on heart meds. Even now on maintenance I get the back pain, flushed, hives and heart palps, flutters. My doctor wants to stop Rituxan and he is loking into alternatives. I trust him he's one of the very best but it's very frustrating because Rituxan can keep away longer and other alternatives have same side effects so I may be done on maintenance.

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    Not so far...
    Hi Sparkyz,
    First off.."Welcome to the group"! I just finished my second round of chemo (r-cvp), and so far I haven't experienced anything from the Rituxan, at least that I know of. I'm scheduled to have 2 years of Rituxan maintenance, after treatment is finished, so any information shared on Rituxan will be greatly appreciated. I experience flushed red face, heart palps, and shortness of breath after each round, but just associated this with the 60mg of prednisone I have to take the day of chemo and following 4 days after. Once the pred is finished all of this stuff subsides, so I doubt the Rituxan is the culprit for me. Keep us posted on what you find out. Take care...Sue
  • onlytoday
    onlytoday Member Posts: 609 Member
    allmost60 said:

    Not so far...
    Hi Sparkyz,
    First off.."Welcome to the group"! I just finished my second round of chemo (r-cvp), and so far I haven't experienced anything from the Rituxan, at least that I know of. I'm scheduled to have 2 years of Rituxan maintenance, after treatment is finished, so any information shared on Rituxan will be greatly appreciated. I experience flushed red face, heart palps, and shortness of breath after each round, but just associated this with the 60mg of prednisone I have to take the day of chemo and following 4 days after. Once the pred is finished all of this stuff subsides, so I doubt the Rituxan is the culprit for me. Keep us posted on what you find out. Take care...Sue

    rituxan
    I was treated with 4 weeks of Rituxan for low grade Marginal Zone stage 4. The first infusion was awful- hives, rigors and low bp. The second gave me a temp the following week. The third was heartburn rash and a temp. The fourth sent me to the ER that night. Throat was closing, temp, body ache,rash - profound allergic reaction. My doc said no more for me and she does have an alternative for me. Will see her on Tuesday and will let you all know what that alternative is.

    It seems that most people have a reaction of some sort the first time, even with premeds but most do not have this kind of reaction.

    She said that although I am allergic she believes that it still did it's job. Will find out on Tuesday when she shares my levels etc. Hope it did work!! She took the less agressive approach of Rituxan to spare me the harshness Chemo. Kind of ironic seeing how the Rituxan almost did me in! LOL

    Love and best wishes to you all! Nice to have you guys to share with.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    onlytoday said:

    rituxan
    I was treated with 4 weeks of Rituxan for low grade Marginal Zone stage 4. The first infusion was awful- hives, rigors and low bp. The second gave me a temp the following week. The third was heartburn rash and a temp. The fourth sent me to the ER that night. Throat was closing, temp, body ache,rash - profound allergic reaction. My doc said no more for me and she does have an alternative for me. Will see her on Tuesday and will let you all know what that alternative is.

    It seems that most people have a reaction of some sort the first time, even with premeds but most do not have this kind of reaction.

    She said that although I am allergic she believes that it still did it's job. Will find out on Tuesday when she shares my levels etc. Hope it did work!! She took the less agressive approach of Rituxan to spare me the harshness Chemo. Kind of ironic seeing how the Rituxan almost did me in! LOL

    Love and best wishes to you all! Nice to have you guys to share with.

    Rituxin
    The only reaction that I know of that I had was the burning in the nose during the infusion. They slowed it down for a few minutes and it went away. John
  • Sparkyz
    Sparkyz Member Posts: 17
    onlytoday said:

    rituxan
    I was treated with 4 weeks of Rituxan for low grade Marginal Zone stage 4. The first infusion was awful- hives, rigors and low bp. The second gave me a temp the following week. The third was heartburn rash and a temp. The fourth sent me to the ER that night. Throat was closing, temp, body ache,rash - profound allergic reaction. My doc said no more for me and she does have an alternative for me. Will see her on Tuesday and will let you all know what that alternative is.

    It seems that most people have a reaction of some sort the first time, even with premeds but most do not have this kind of reaction.

    She said that although I am allergic she believes that it still did it's job. Will find out on Tuesday when she shares my levels etc. Hope it did work!! She took the less agressive approach of Rituxan to spare me the harshness Chemo. Kind of ironic seeing how the Rituxan almost did me in! LOL

    Love and best wishes to you all! Nice to have you guys to share with.

    Wow
    Good to know. I look forward to hearing what the alternative is going to be? Hopefully something you and I can both take and will work.
    :)

    Thanks again and good to meet new friends on this board!
  • TGP
    TGP Member Posts: 5
    Sparkyz said:

    Wow
    Good to know. I look forward to hearing what the alternative is going to be? Hopefully something you and I can both take and will work.
    :)

    Thanks again and good to meet new friends on this board!

    Rituxan
    I have been on Rituxan maintenance for approx. eleven years. I have been experiencing severe skin itching and rash for the past eight months. My oncologist has discontinued the Rituxan maintenence treatments. As I understand it, there are no conclusive completed studies on the potential long term side effets of Rituxan. I am thinking my itching and rash may be side effects. I would be interested in knowing if anyone else has been on Rituxan for an extented period of time and if they have experienced any side affects.
    It is really good to have this ability to communicate with each other.
  • UKKaz41
    UKKaz41 Member Posts: 3
    TGP said:

    Rituxan
    I have been on Rituxan maintenance for approx. eleven years. I have been experiencing severe skin itching and rash for the past eight months. My oncologist has discontinued the Rituxan maintenence treatments. As I understand it, there are no conclusive completed studies on the potential long term side effets of Rituxan. I am thinking my itching and rash may be side effects. I would be interested in knowing if anyone else has been on Rituxan for an extented period of time and if they have experienced any side affects.
    It is really good to have this ability to communicate with each other.

    Rituxan (Rituximab in UK)
    Hi Everyone

    What an interesting topic - I'll throw in what I know for now if that's ok?

    In the UK we're told generally that Rituxan / Rituximab has no side effects except for during the actual infusion process. These effects include flushing, closing of the throat or tight chest sensations, chills, palps and feelings of fever. Also BP can go up or down.

    Generally if they slow down the infusion these problems go away. My infusion used to take 6 to 8 hours each time! (everyone else was about 1 - 2 hours)

    We're told that there should be no after effects other than maybe an elevated Uric Acid level as the Rituxan kills off the bad cells and the body trys to flush them out - we're usually given an Anti-Gout medication here (allopurinol) to counter act those effects.

    Its interesting that you all speak of a 'rash and itching sensation' as I had that really badly twice in the last year BUT have been off Rituxan for over 2 years! My GP said it was an allergic reaction to something and since a new HRT is the only drug I was taking we had to assume it was that. However the rash came back some months after I stopped the HRT. Strange

    I wonder if it is anything else any of us are taking or is it our immune systems being rather over sensitive after what they have been through? So im saying should we look beyond the Rituxan - is it something else? Interesting..

    All the best to you all
    Karen
    x
  • onlytoday
    onlytoday Member Posts: 609 Member
    Sparkyz said:

    Wow
    Good to know. I look forward to hearing what the alternative is going to be? Hopefully something you and I can both take and will work.
    :)

    Thanks again and good to meet new friends on this board!

    Alternative to Rituxan
    The alternative that my doc said she has in mind is ofatumumab (trade marked as Azerra). So when I got home I of course immediately looked it up and I can only find it being approved for CLL not lymphoma. ??!! So, I just don't know. We are doing some watchful waiting until November and when I see her I will clarify. Maybe there is a trial or maybe the web isn't up to date (very likely). I will keep you posted. The best to you!
  • ktjc129
    ktjc129 Member Posts: 6
    rituxan effects
    Hi, I was on rituxan and several other chemo. drugs when I was diagnosed three years ago, and then just the rituxan maintenance program for the past two years. I experienced chills during the infusion process, but just about every three months I would be in the hospital with small bowel obstructions, including Easter, and Christmas days. I was assured that this was a side effect that very few people experienced. Yeah, Me! How would they like a N/G tube and fluid IV's for three days? I couldn't wait for dessert another bag of iv fluids.
  • ktjc129
    ktjc129 Member Posts: 6
    rituxan effects
    Hi, I was on rituxan and several other chemo. drugs when I was diagnosed three years ago, and then just the rituxan maintenance program for the past two years. I experienced chills during the infusion process, but just about every three months I would be in the hospital with small bowel obstructions, including Easter, and Christmas days. I was assured that this was a side effect that very few people experienced. Yeah, Me! How would they like a N/G tube and fluid IV's for three days? I couldn't wait for dessert another bag of iv fluids.
  • onlytoday
    onlytoday Member Posts: 609 Member
    ktjc129 said:

    rituxan effects
    Hi, I was on rituxan and several other chemo. drugs when I was diagnosed three years ago, and then just the rituxan maintenance program for the past two years. I experienced chills during the infusion process, but just about every three months I would be in the hospital with small bowel obstructions, including Easter, and Christmas days. I was assured that this was a side effect that very few people experienced. Yeah, Me! How would they like a N/G tube and fluid IV's for three days? I couldn't wait for dessert another bag of iv fluids.

    Rituxan
    Had my follow up visit last week and my onc said blood work in a month. I am allergic to Rituxan so that is off the table for me. It's still in my system so we're just watching what my levels do. There are alternatives for me other than chemo but my doc did admit that what she is looking at is not yet FDA approved. So... if I have a reoccurance that requires treatment in the near future I'm sure that we'll be doing chemo. Hope we can keep it at bay for awhile until the other antibody she wants to try is approved. I trust her judgement and am just taking it one day at a time...
  • TGP said:

    Rituxan
    I have been on Rituxan maintenance for approx. eleven years. I have been experiencing severe skin itching and rash for the past eight months. My oncologist has discontinued the Rituxan maintenence treatments. As I understand it, there are no conclusive completed studies on the potential long term side effets of Rituxan. I am thinking my itching and rash may be side effects. I would be interested in knowing if anyone else has been on Rituxan for an extented period of time and if they have experienced any side affects.
    It is really good to have this ability to communicate with each other.

    itch
    Yes I had 6 treatments my hair has grown back but my scalpe now itches all the time and have a rash going down the back of my neck.
    Its been 2 months since I had my last treatment.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member

    itch
    Yes I had 6 treatments my hair has grown back but my scalpe now itches all the time and have a rash going down the back of my neck.
    Its been 2 months since I had my last treatment.

    Last treatment??
    Mike,
    What do you mean by last treatment? Last treatment of chemo or rituxin? I know for me rituxin is a 2 year thing after chemo. John(FNHL-1-4A-5/10)
  • mmg0302
    mmg0302 Member Posts: 2
    My dad is currently in his

    My dad is currently in his second round of Chemo,  He completed his first round last mth....first day was the Rituxin and the 2nd and 3rd day he has the Treanda.  He has minor symptoms afer his first round.   The 2nd round sent him to the ER.  We postponed treatment for 2 weeks and he started up again yesterday.  About 1/2 way thru his treament of the Rituxin, he broke out in severe hives and we had to end the session.

  • NANCYL1
    NANCYL1 Member Posts: 289
    mmg0302 said:

    My dad is currently in his

    My dad is currently in his second round of Chemo,  He completed his first round last mth....first day was the Rituxin and the 2nd and 3rd day he has the Treanda.  He has minor symptoms afer his first round.   The 2nd round sent him to the ER.  We postponed treatment for 2 weeks and he started up again yesterday.  About 1/2 way thru his treament of the Rituxin, he broke out in severe hives and we had to end the session.

    RITUXAN

    The first time I had a Rituxan infusion, I had a very bad reaction.  The doctor added steroids to the Rituxan and I continued with the infusion that day.    It was OK.  No more reaction.  

    In the mix now is Tylenol, Benydryl, along with the steroids.  It goes along smoothly.

    I do not like the after effects of the steroids, however.    I get nervous, and a fast pulse off and on for a day or so.  I checked with my cardiologist and he said it was ok.

    I had two sets of infusions last year, and have two more sets this year.  Then we will see. 

    Rituxan has helped me:  White blood cells, red blood cells and platelets are now normal.

    Some tiredness is also an after effect.

         Nancy

     

     

     

     

     

  • caoimhe
    caoimhe Member Posts: 1
    ktjc129 said:

    rituxan effects
    Hi, I was on rituxan and several other chemo. drugs when I was diagnosed three years ago, and then just the rituxan maintenance program for the past two years. I experienced chills during the infusion process, but just about every three months I would be in the hospital with small bowel obstructions, including Easter, and Christmas days. I was assured that this was a side effect that very few people experienced. Yeah, Me! How would they like a N/G tube and fluid IV's for three days? I couldn't wait for dessert another bag of iv fluids.

    rituxin bowel problems

    Hi KTJC 129

     

    So good to hear soneone else has experienced the bowel problems. Did your bowel problems conntinue or did tgey just go away agter some time?

    Thank you so much 

  • nellellen8052
    nellellen8052 Member Posts: 2
    TGP said:

    Rituxan
    I have been on Rituxan maintenance for approx. eleven years. I have been experiencing severe skin itching and rash for the past eight months. My oncologist has discontinued the Rituxan maintenence treatments. As I understand it, there are no conclusive completed studies on the potential long term side effets of Rituxan. I am thinking my itching and rash may be side effects. I would be interested in knowing if anyone else has been on Rituxan for an extented period of time and if they have experienced any side affects.
    It is really good to have this ability to communicate with each other.

    Long term Rituxan maintenance therapy

    Hi TGP,

    I realize it has been almost five years since you posted, but I'm hoping this post finds you well and still engged in this forum. I was diagnosed with NMZL stage 2 in 2007. At that time the protocol was CVPR with maintenance Rituxan. For over seven years I felt Rituxan was a miracle drug. In the early part of 2014 I developed what I later learned was microscopic colitis. This is controllable with a prescription called budesonide, very expensive in US so I buy from Canada. During the undiagnosed period of MC I had pneumonia twice. My onc took me off Rituxan and put me on IVIG once a month...until last month. Now, I have IVIG every other month and NO Rituxan. When I had Rituxan, the infusion days were gone days! It appears I overreact to the Benadryl and am in a zone between asleep and awake. I do not have the symptoms you have described. However, my most recent gammaglobulin bloodwork is somewhat alarming. IG is high, but both IA and IM are low. Eleven years prior to NHL diagnosis I was diagnosed with Sjogren's Syndrome and Autoimmune Hepatitis. So, one of the deficiencies I believe comes from the autoimmune disorders, but not sure about the other. Any ideas?