Side effects-Rituxan?

13

Comments

  • Johnvn
    Johnvn Member Posts: 4
    #42
    BAREFOOTEAGLE said:

    RITUXAN SIDE EFFECTS ANY ANSWERS?
    I was diagnosed with StaGe IV NHL, follicular B, in Jan 2005. My first treatment with chop and Rituxan I had an antiflactic reaction and stopped breathing. My treatment continued in the hospital then in the clinic. I received Rituxan and chop for 1-1/2 years then Rituxan as a prophylaxis for another two years. I have been cancer free for 2 years. The drugs have diminished my quality of life to the point that I am very depressed and cannot find answers to my symptoms/effects of the drugs. I have been taking supplements and vitamins, changed my ph from acidic to alkaline and read everything I can about these drugs. I ache all-over especially in my lower back and hips (where I previously had bursitis). I have extreme exhaustion all the time, even though I have no trouble sleeping and get 8-9 hours sleep nightly. I used to get along on six hours and was a type "A" with energy to spare. I also gained 50 pounds from the steroids and am too tired to do exercises although I am active in cleaning and maintaining our home and pets. If anyone knows what to do about the exhaustion or what causes it I would sure appreciate knowing about it. I am grateful to be alive but would like to lead an active, productive energetic life again...

    side effects
    As indicated elsewhere, side effects can be caused also by CHOP. I would advise to get psych-social assistance, not only for yourselves, but also for your spouse.
    If you consider devorce, be aware it is a common reaction to de chemo treatment. Also, as I was informed, more and more often the HEES (Hyper emotional estetical syndrom) is seen as result of chemotreatment.

    An additional problem is that family and friends might want to assist the patient whilst not showing respect for the bond between patient and spouse thus causing grave relation problems.
  • Johnvn
    Johnvn Member Posts: 4
    #43
    Evaline said:

    B Cell NHL
    It seems that everyone else has had Chop for NHL. I have only had the Rituxan, with steroid,
    and Tylenol. I had stage 3, one in my neck and one behind my stomach. After 4 treatments, the scan showed I was in remission. Will take my last 2 year maintenance treatment in June 2009. I didn't realize that Rituxan made joints hurt. I hurt in my knees. But it is better than knowing I have the Cancer. I also have arthritis in my hands, so I attriputed the pain in my knees to the arthritis. Has anyone else just had Rituxan for NHL or has everyone had Chop also? If so how long in remission? I sometimes tingle in my left had fingers. But, since I am doing my last treatment I guess I will have to go with it. Will have another scan in July -09.

    How long does remission usually last?

    B cell NHL
    all symptoms mentioned are caused by Rituxan
  • Daniel M
    Daniel M Member Posts: 1
    #44
    Your chronic pain
    My last treatment was 5 yrs ago, I have had to go thru chemo on three seperate occasions, rituxan on the last two. I have been screaming for help for my joint pain for eight hrs now! I have also prayed for God to end my pain, don't get me wrong, I love life, I just can't function with this pain. I am now going to a pain clinic, I am gotting morphean. That is not helping much I have an appt. Tue. I believe we will have to deal this rituxan side effect for the rest of our lifes! The bad part about this is I am only 44, I look healthy, no one understands how I feel.
  • plymouth
    plymouth Member Posts: 2
    #45
    Daniel M said:

    Your chronic pain
    My last treatment was 5 yrs ago, I have had to go thru chemo on three seperate occasions, rituxan on the last two. I have been screaming for help for my joint pain for eight hrs now! I have also prayed for God to end my pain, don't get me wrong, I love life, I just can't function with this pain. I am now going to a pain clinic, I am gotting morphean. That is not helping much I have an appt. Tue. I believe we will have to deal this rituxan side effect for the rest of our lifes! The bad part about this is I am only 44, I look healthy, no one understands how I feel.

    Chronic Pain
    This has been a very interesting discussion for me. I was first diagnosed with B-Cell in March, 2009 when I had a "tumor" removed from the silava gland on the left side of my neck. Because they were able to remove it all, we then took a wait-and-watch approch. In June,2009 I was again diagnosed from a tumor in my groin area. I underwent chemo that did include Rituxan. I had no bad side-effects, only fatigue and sleeplessness. I also had 4 maint. treatments of Rituxan with no serious side-effects. However, I have suffered greatly with joint pain, from my back, legs, shoulders, feet, etc. Because I also underwent 2 back surgeries in 2009, I had always assumed that my current pain is caused by the back problems I have. Now I am wondering if it is actually from the Rituxan. I wonder if there is anyway a doctor could tell me this.
    I also understand how you feel about looking so healthy and yet feeling so lousy - it is hard to explain to someone how you feel so bad, yet look so healthy.
  • ttait
    ttait Member Posts: 1
    #46
    plymouth said:

    Chronic Pain
    This has been a very interesting discussion for me. I was first diagnosed with B-Cell in March, 2009 when I had a "tumor" removed from the silava gland on the left side of my neck. Because they were able to remove it all, we then took a wait-and-watch approch. In June,2009 I was again diagnosed from a tumor in my groin area. I underwent chemo that did include Rituxan. I had no bad side-effects, only fatigue and sleeplessness. I also had 4 maint. treatments of Rituxan with no serious side-effects. However, I have suffered greatly with joint pain, from my back, legs, shoulders, feet, etc. Because I also underwent 2 back surgeries in 2009, I had always assumed that my current pain is caused by the back problems I have. Now I am wondering if it is actually from the Rituxan. I wonder if there is anyway a doctor could tell me this.
    I also understand how you feel about looking so healthy and yet feeling so lousy - it is hard to explain to someone how you feel so bad, yet look so healthy.

    rituxan and joint pain/swelling
    I have had one 4 dose treatment and 1 maintenance treatment, the original was in December 10. No side effects at all until after the maintenance dose. I am not on any other treatments, only rituxan to shrink what is diagnosed as one lymph node Castlemans disease which is not categorized as cancer. Now having hand and foot swelling, and significant pain in foot and hand joints, and it seems to be spreading to shoulders and maybe hips. Dr. put my on lasix to control swelling, which helped a little, but the pain continues to increase. It is probably only a 3 or 4 on the 10 scale, but getting to the point where I cant grip a bottle to open it for example. Got another does scheduled in about 5 weeks and starting to wonder if I should go ahead with it. The castlemans node has shrunk significantly, and the anemia associated with it has recovered to the point where my rbc is almost normal again. Mostly concerned about the joint pain at this point and whether it diminishes again after the treatments.
  • miss maggie
    miss maggie Member Posts: 929
    #47
    ttait said:

    rituxan and joint pain/swelling
    I have had one 4 dose treatment and 1 maintenance treatment, the original was in December 10. No side effects at all until after the maintenance dose. I am not on any other treatments, only rituxan to shrink what is diagnosed as one lymph node Castlemans disease which is not categorized as cancer. Now having hand and foot swelling, and significant pain in foot and hand joints, and it seems to be spreading to shoulders and maybe hips. Dr. put my on lasix to control swelling, which helped a little, but the pain continues to increase. It is probably only a 3 or 4 on the 10 scale, but getting to the point where I cant grip a bottle to open it for example. Got another does scheduled in about 5 weeks and starting to wonder if I should go ahead with it. The castlemans node has shrunk significantly, and the anemia associated with it has recovered to the point where my rbc is almost normal again. Mostly concerned about the joint pain at this point and whether it diminishes again after the treatments.

    Rituxan
    Hello,

    I had only one treatment of Rituxan in Dec 2009. Once weekly for 4 weeks. My small
    bowel perforated caused by NHL in Sept 2009. I had surgery to resect, and was told additional
    surrounding areas were removed. I was given Rituxan as a precaution. I had no side effects
    at all. I did have a BMB biopsy, which I believe caused
    my current problems with my right hip. I realize the BMB had to be done to see if there were
    any growth in my bone marrow.

    I am so sorry for the problems you are having. I would absolutely talk this over with your
    doctor. It is very hard for me to offer an opinion. I am not a doctor. But, in my opinion,
    the Rituxan seems to be doing some good. Perhaps in 5 weeks you will feel better.

    Keep us informed what your doctor tells you. Love Maggie
  • skuttlebug
    skuttlebug Member Posts: 45
    #48
    miss maggie said:

    Rituxan
    Hello,

    I had only one treatment of Rituxan in Dec 2009. Once weekly for 4 weeks. My small
    bowel perforated caused by NHL in Sept 2009. I had surgery to resect, and was told additional
    surrounding areas were removed. I was given Rituxan as a precaution. I had no side effects
    at all. I did have a BMB biopsy, which I believe caused
    my current problems with my right hip. I realize the BMB had to be done to see if there were
    any growth in my bone marrow.

    I am so sorry for the problems you are having. I would absolutely talk this over with your
    doctor. It is very hard for me to offer an opinion. I am not a doctor. But, in my opinion,
    the Rituxan seems to be doing some good. Perhaps in 5 weeks you will feel better.

    Keep us informed what your doctor tells you. Love Maggie

    Side effects
    I to have pain and sevre fatigue, lack of energy, and I am staying sick a lot. With me it sort of creeped upon me, at first the pain which I contributed to some something else, then came the fatigue,lack of energy, and now my immune system seems to have nothing in it. I seem to catch everything, recently thrush that took two months to get rid of, now sneezing and sore throat that keeps haging on, was gone for a day, came back the next. I am so missarble with the fatigue, i used to be the kind of person that never stopped and never got sick. I have nlh indolent grade2 typeb with bone marrow involement. I had treatment in late 2005-2006 withcvp-r came back 2007 had rchop for 6 months and maintence of rituxan for two years, finished everything in 2010, and the fatigue just got worse I stopped driving no energy=no fun, and now this i've searched for anwsers, now i think i have found one, despite the fact my onc keeps saying no. I will keep praying for strenth. bleesings Denise
  • Quissy103
    Quissy103 Member Posts: 3
    #49
    Rituxan side effects
    I know this post I am answering is old, but I also have side effects from Rituxan. I am receiving this drug for Lymphoma......and am surprised they give it to RA sufferers. The joint pain is so bad sometimes, I can't find a comfortable position in a chair or in bed. Also the fatigue is incredible. I am on a maintenance plan....once a week for 4 weeks, then off for 3 and back to that same schedule. The first one......I'm tired..... second one.....joint pain increases.......third one.......pain and fatigue starts.......fourth one........just miserable for 2 weeks.
  • Quissy103
    Quissy103 Member Posts: 3
    #50
    BAREFOOTEAGLE said:

    RITUXAN SIDE EFFECTS ANY ANSWERS?
    I was diagnosed with StaGe IV NHL, follicular B, in Jan 2005. My first treatment with chop and Rituxan I had an antiflactic reaction and stopped breathing. My treatment continued in the hospital then in the clinic. I received Rituxan and chop for 1-1/2 years then Rituxan as a prophylaxis for another two years. I have been cancer free for 2 years. The drugs have diminished my quality of life to the point that I am very depressed and cannot find answers to my symptoms/effects of the drugs. I have been taking supplements and vitamins, changed my ph from acidic to alkaline and read everything I can about these drugs. I ache all-over especially in my lower back and hips (where I previously had bursitis). I have extreme exhaustion all the time, even though I have no trouble sleeping and get 8-9 hours sleep nightly. I used to get along on six hours and was a type "A" with energy to spare. I also gained 50 pounds from the steroids and am too tired to do exercises although I am active in cleaning and maintaining our home and pets. If anyone knows what to do about the exhaustion or what causes it I would sure appreciate knowing about it. I am grateful to be alive but would like to lead an active, productive energetic life again...

    Rituxan Side Effects
    my first bout with Lymphoma was large B cell.....aggressive.......I almost made it to the 5 year mark when I was diagnosed with follicular and started Rituxan......the first infusion, I had reaction......so spent 8 hours at cancer center while they gave me a counteracting drug. Now I am on my 3 round (once a week for 4 weeks.....then off 2 months and start again) I am tired all the time, gained weight.......my ONC told me most people feel better....I'm shocked to hear that......when I asked the chemo nurse, she said most people feel fatigue and some do gain weight. I had energy to clean my 2500 sq. ft. house before, now I am just not able to. I'm afraid to travel and life stinks. I know how you feel....I miss my old life........but also am grateful to be alive. I don't think anyone believes me when I say I am exhausted and need to lie down. It's depressing.
  • JoanieP
    JoanieP Member Posts: 573
    #51
    Quissy103 said:

    Rituxan side effects
    I know this post I am answering is old, but I also have side effects from Rituxan. I am receiving this drug for Lymphoma......and am surprised they give it to RA sufferers. The joint pain is so bad sometimes, I can't find a comfortable position in a chair or in bed. Also the fatigue is incredible. I am on a maintenance plan....once a week for 4 weeks, then off for 3 and back to that same schedule. The first one......I'm tired..... second one.....joint pain increases.......third one.......pain and fatigue starts.......fourth one........just miserable for 2 weeks.

    Miserable
    I just finished my last (8) rituxin maintanence for Lymphoma , Follicular stage 3. I too have pain usually a couple weeks after the treatment. I drink Tart cherry joice which helps and try to stay active. I take hot showers and hope it will pass soon. I too look very healthy but my husband hears me complain a lot.
  • xlconsult
    xlconsult Member Posts: 18
    #52
    skuttlebug said:

    Side effects
    I to have pain and sevre fatigue, lack of energy, and I am staying sick a lot. With me it sort of creeped upon me, at first the pain which I contributed to some something else, then came the fatigue,lack of energy, and now my immune system seems to have nothing in it. I seem to catch everything, recently thrush that took two months to get rid of, now sneezing and sore throat that keeps haging on, was gone for a day, came back the next. I am so missarble with the fatigue, i used to be the kind of person that never stopped and never got sick. I have nlh indolent grade2 typeb with bone marrow involement. I had treatment in late 2005-2006 withcvp-r came back 2007 had rchop for 6 months and maintence of rituxan for two years, finished everything in 2010, and the fatigue just got worse I stopped driving no energy=no fun, and now this i've searched for anwsers, now i think i have found one, despite the fact my onc keeps saying no. I will keep praying for strenth. bleesings Denise

    Hi Denise,
    Sorry to know
    Hi Denise,
    Sorry to know about the side effects you have with Rituxin. Pl. read my posting "Side Effect for Rituximab Maintenance Therapy" dated 7/7/11 explaining my 1 year struggle with immune problems (recurring ulcers in throat, pain and depression) and how a wonder herb called "Ashwagandha" helped me to boost my Lymphocytes within a month.

    Good Luck,
    Hari
  • rclaxb
    rclaxb Member Posts: 13
    #53
    Pain with Rituxan
    I am on Rituxan now and have two more treatments. My only problems are pain in the legs at night, but I have had cramps like that throughtout my life. I have lower back pain problems. My primary doctor, since I have been diagnosised with Follicular Lymphoma, sees me every three months and after the first year of asking he finally decided I was depressed and started me on prozac. Within a month my back pains have left. I discussed this with him and he has heard of it and even said a new depression medication will be coming out sometime that is targeted to help with pain besides depression. He is on top of this issue with me and it has made a world of difference for me.
  • JoanieP
    JoanieP Member Posts: 573
    #54
    paulenarae
    I was in pain after my last treatment for Rituxin in July after 2 years maintenance. I have done several things and feel much better. I now take 1500mg of Glucosomine, drink dark cherry juice from the health food store. The directions are on the bottle, and bought a tempur pedic mattress. I don't know which helped but I do feel much better. The Dr. reccommended the glucosomine. Hope somethings helps so. Pain is not fun Joanie
  • JoanieP
    JoanieP Member Posts: 573
    #55
    paulenarae
    I was in pain after my last treatment for Rituxin in July after 2 years maintenance. I have done several things and feel much better. I now take 1500mg of Glucosomine, drink dark cherry juice from the health food store. The directions are on the bottle, and bought a tempur pedic mattress. I don't know which helped but I do feel much better. The Dr. reccommended the glucosomine. Hope something helps . Pain is not fun Joanie
  • joystk
    joystk Member Posts: 1
    #56
    Quissy103 said:

    Rituxan side effects
    I know this post I am answering is old, but I also have side effects from Rituxan. I am receiving this drug for Lymphoma......and am surprised they give it to RA sufferers. The joint pain is so bad sometimes, I can't find a comfortable position in a chair or in bed. Also the fatigue is incredible. I am on a maintenance plan....once a week for 4 weeks, then off for 3 and back to that same schedule. The first one......I'm tired..... second one.....joint pain increases.......third one.......pain and fatigue starts.......fourth one........just miserable for 2 weeks.

    itching after rituxin
    My husband has had 3 treatments of rituxin. No side effects as others have mentioned. But the last 2 months he has itched terrribly, no skin irration to be seen. Dr does not think it is rituxin. Has anyone out there had this problem? Nothing seems to help.
  • leon38
    leon38 Member Posts: 3
    #57
    lindaintn said:

    pain with rituxan
    Hello. I am new here. i am currently in my 3rd round of rituxin. my aches and pains come and go. A few days i feel like i have the flu, then a few good days. i do that for a few months and as time goes on it gets less and less. Sorry to hear your having such trouble with it on top of everything else

    rituxan
    I am on my 2nd treatment now with rituxan only my doctor said 4 treatments and then do a scan to see if it worked in 4 weeks and then do treatments every 3 months if it worked. How have you done with it since this was posted in 2009.
  • leon38
    leon38 Member Posts: 3
    #58
    jerry1342 said:

    My experience w/Rituxan
    I was diagnosed in Sept 2009 with grade 1, stage 3 (neck and abdomen). After a 3 month wait and see, it was suggested that I start treatment. Choices were more wait and see, Rituxan or CHOP. I chose Rituxan with Chop in reserve as plan B. 8 weeks of Rituxan, tynenol, benydrol and a steroid and a month wait, my tumors had shrunk more than 50%. I am now in a 4 week aditional treatment with the above. I have experienced no real side effects from the chemicals that I know of. I do know that I am tired alot and have sleep problems a couple of days after, but that may be just emotional effects. My Dr. is talking a mainyenance program of a Rituxan infusion every 2 or 3 months.

    How are you doing so far.
    How are you doing so far. Are you in remission now.
  • Dafna
    Dafna Member Posts: 1
    #59
    rituxan
    My experience with rituxan has been pretty crazy. In 2005, I was diagnosed with ITP, an autoimmune disease that affects my platelets. After many treatments and steroids which failed, I was given IV rituxan. During my first dose I reacted (even though they gave me benadryl), my throat closed, they gave me more benadryl and I was fine. I had a second dose of rituxan a week later. Within a day of that treatment I began having the flu like symptoms, high fever, aches and pains, and no appetite. My hematologist/oncologist said I probably just had the flu. Within 5 days I had lost the ability to walk, and was basically paralyzed. I was admitted to the er with 7,000 platelets and no feeling in my body up to my neck. If I was touched it felt like I was being stabbed. My veins collapse and they did not know what to do. The makers of rituxan claimed they had never had a reaction to their drug such as this and tested my antibodies. As a result of this reaction I have severe fybromialgia and constant joint and bone pain. Over the years , whenever I had a n accident or a long day, or was not feeling well, I would black out and my blood pressure would shoot up during the loss of consciousness. In 2010, I had a bad concussion, after the concussion I had gibberish speech, memory loss, and migraines. Within a month, I began experiencing seizure like activity, tremors, and passing out with my blood pressure shooting up during the loss of consciousness. I sought out help through my hematologist, who sent me to a neurologist who tried to blame the symptoms on stress. I had many EEG's, where I had these symptoms come up, but they gave me no help or answers. I started eastern medicine in May, 2011 (light touch therapy and acupuncture), which helped quite a bit with the seizure and blacking out issues. I am beginning to experience the seizure like or tremor symptoms again along with bone and heart pain that comes often. I believe all of the things that I am experiencing are due to rituxan. My doctor denies this emphatically, but everything I read makes me believe otherwise. As well, no one can help me or tell me why I am experiencing these things. One more thing is that I am anaphalactically allergic to all antibiotics and to many pain killers. They gave me dilaudin for the pain from the rituxan reaction when I was hospitalized, which I did not react to.
  • Jimbo T
    Jimbo T Member Posts: 1
    #60
    BradPelzek said:

    Rituxan treatment
    Hello,
    I had rituxan treatment for NHL large b-cell lymphoma and am in remission.
    My doctor continued to prescribe rituxan after remission and I decided to
    get a second and third opinion about this approach. The other two doctors
    both said that rituxan should not be used as a maintenance therapy if you
    are in remission, and that side effects are really not known for this drug.
    I had a severe reaction the first time I took rituxan and went into severe
    rigors so I did not especially enjoy taking it, but it obviously helped battle
    the cancer.
    So after my alternative opinions I told my oncologist that I would decline
    anymore rituxan since its benefits are not proven at all in long term maintenance.
    I don't know the details of your cancer but mine was a very aggressive type
    and my doctor was siding on the safe side with more rituxan.
    But back to your aches and pains-I had some of the same feelings with severe
    fatigue, joint soreness and just a lack of energy. That was one of the
    reasons I quit rituxan, but I really didn't know if rituxan caused those
    symptoms or if my body was just exhausted from heavy chemotherapy, radiation,
    mental and physical stress, etc.
    Everyones' case is different I guess in terms of what your doctors'
    reasons are. My doctor said I was depressed, which I was, and that depression
    is actually physically painful(joint pain, muscle ache).
    I don't know if your cancer is more indolent than aggressive which might explain
    the rituxan maintenance. I don't know if you have had a second opinion but it
    certainly helped to give me some options and perspective on treatment.

    Hopefully all goes well and I helped in some way.
    Take care and God bless.

    Brad Pelzek

    second opinion

    I have subcutaneous b cell lymphoma.  It is chronic.  I just had my fourth cancer discovered in three years.  I have done radiation twice, and rituxan once.  My doctor wants me to go back and try rituxan again (four sessions) with one session maintenance every three months for two years.  I am thinking that is a lot.  Even if it is chronic.  A second opinion sounds like something I should look into. I have the option of doing a shorter radiation treatment than last time, or just observe (as it is so slow growing). My oncologist sounds very confident about this format.  Should I look for a second opinion?  Because I am 67 years old I wonder about recovery being more difficult each time.

  • NANCYL1
    NANCYL1 Member Posts: 289
    #61
    RITUXAN

    Paulenare:

    I discovered that I had B Cell Lymphoma, Non-Hodgkins, stage 4 in early 2012.   I had Rituxan for about 2 years and finished last Nov. 2013.  I had a bad reaction to the first infusion, so steroids were added, and Benadryl.   Also 2 Tylenols.  Things went fairly smoothly, although I have been tired.  Have had some anxiety and depression.  Also had 2 heart surgeries:  one in 2008 and the other this year, 2014.  My oncologist left the cancer center and I started with a new onc. in October, who seems to be sharp.  I have had a lot of pain since I left the Rehab for my heart surgery.  I think that the rehab (on various machines) is to blame, aggravating the arthritis that I have had for years.  I need to do something about it.  Would it help you, do you think, to go to and Orthopedic Surgeron and/or a Physical Therapist?  I don't like feeling so much pain in my back.  It does improve as the day goes on; that is why I think it is arthritis.  I am off Rituxan and go to the Oncologist every 3 months.  My Platelets are somewhat low right now.  Nothing needs to be done about that at the moment.  No one should have to go through constant pain,   I have heard that some doctors are too conservative regarding pain.

    Nancy.

     

     

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