I'm on my second infusion of Rituximab and I had flu like symptoms, sore throat and a terrible muscle pain in my joints and all over? Is this normal... Please somebody answer me... Desperate..
Did anyone experience severe joints and muscle pain after Rituximab?
Question posted by Baneza on 9 Feb 2015
Last updated on 25 January 2022
9 Answers
Purple1111
24 Feb 2019
I have lymphoma stage 4. since 2012. this is a risk. Dr said, not many studies. all of chemotherapy is a risk. very many choose not to. it is very personal and at times, I have felt bullied.
I am not feeling well. walking once was a real joy. now I ache
10824
26 Jan 2022
I too feel bullied sometimes but I stand up to them letting them know that I won't have it
Purple1111
23 Feb 2019
Hello, I have had rotoxin maintenance and regret doing it. it has been two years and no matter what exercise I do or for any duration, 3 times a week. My legs and arms ache. Tylenol, I am now allergic to it. I had brain fog horribly. they said it does not happen. everything I have said, this does not happen.
frankly, I am not doing either chemo or rotoxin again.
I have done rchop
cisplatin, I believe and rotoxin
then 6 months rotoxin
kevinsoucy
18 Jan 2019
I had 4 treatments of Rituxan in late 2012 and another 4 treatments a few weeks ago ending in mid October. I have CLL and ITP (platelet counts single digits) and have used it to moderate my white blood counts and to attempt to increase platelets. The first round of treatment I got good effects on both counts, the second time I have only gotten limited results white WBC numbers down some but little to no affect on platelet counts.
I seem to have had three major areas of side effects both times that I have had this and they have gone on for a few to several months after. First, I have had tremendous pain in my hands and hips, radiating down the legs to the feet, which have had some significant effects of tingling sensation, loss of feeling, etc. For some time after treatment my right foot would go to sleep completely and I would have to stop driving.
I have had to change nearly every pair of shoes that I own to provide extra room because at times they also feel slightly swollen. Today, the pain is most significant in my hips, which is almost like a Bursa/bursitis pain, which it could be, if the drug has aggravated that condition.
Second, after both sets of treatments I have had a resulting serious infection of some sort which required surgery or some other treatment. After the first round in 2012, three months after I was hospitalized with a huge infected cyst on my spine which required emergency surgery while on vacation in Florida. In the second instance, I ended up with a very similar scrotal cyst which caused some serious blood and discharge at urination, etc.
Thirdly, I am troubled by a deep dry cough and a very deep sinus infection which I am just getting around now, about 10 weeks after treatments were completed. The cough is clearly due to pharyngitis and is somewhat caused by the treatments and exacerbated by the serious amount of discharge into my esophagus and windpipe from the deep sinus infection. We have done multiple tests for reflux, asthma, allergy and other causes of this, but it can only be related to the Rituxan.
I have had a serious cough on and off since my earlier Rituxan treatment and also during and after a clinical trial in which I was treated with Idealisib and Ofatumumab. Those drugs nearly killed me with several serious side effects in multiple bouts of pneumonitis, colitis, kidney infection, and serious liver issues which caused AST/ALT numbers to go from 20s to 1000/2000, which required hospitalization at the Brigham liver transplant ward.
So, while I have found some drugs which caused worse symptoms than Rituxan, what I say today is that I have never, ever found myself at risk of such serious side effects and complications from drugs, almost to the point that I would rather roll the dice without the treatment. My oncologists have suggested that I start taking Imbruvica, at a cost of $38k per quarter for 90 days of pills, but it is so closely related to Idealisib I am scared to take it for fear of damage to lungs, liver and intestines. So, I will try and tolerate Rituxan as many times as I can while not venturing into other cytotoxic or newer biologic treatments. I hate my Rituxan side effects, but I am comfortable dealing with gamma globulin types treatments like this and IVIG to moderate my problems.
Sorry for the length of this, but anyone feel free to contact me directly if you have questions.
Klbest09
9 Jan 2019
Hello I’m experiencing joint pain and sometimes chest problems like heartburn feeling . The very first time I got the treatment nothing happened but the second go round I experience my first joint pain which was in the hands .. I couldn’t open things like a door knob or grasp anything because it hurt so bad . I’m on my second infusion this coming up Thursday (which is tomorrow) and hoping it doesn’t get worse . I already feel that it’s at the worst . Sunday it started with my hands and by Tuesday it was my whole body (legs, hands, neck,arms) this is the first my whole body was hit . I’m glad I’m not alone but sad that we all have to go through this .
Beatthis
7 Nov 2018
I just had my second round of ritoximab.. I do it over 2 days.yesterday I got so nauseous and threw up a few times today after treatment I can barely lift my right arm and my hand.My legs hurt to walk.. Tylenol didn't even help.
10824
26 Jan 2022
I'm about to go into the 2nd round. Gosh i dont need any more problems than the condition for the treatment of the rituximab/bandamustine. It would help to know if your treatment was in my state of NY where I will be treated
10824
26 Jan 2022
I'm about to go into the 2nd round. Gosh i dont need any more problems than the condition for the treatment of the rituximab/bandamustine. It would help to know if your treatment was in my state of NY where I will be treated
10824
26 Jan 2022
I'm about to go into the 2nd round. Gosh i dont need any more problems than the condition for the treatment of the rituximab/bandamustine. It would help to know if your treatment was in my state of NY where I will be treated
Mothermac39
30 June 2018
I had my first infusion last week. Terrible muscle and joint pain, severe backache, Extreme fatigue Due for another infusion next week. Should I have it? I feel terrible.
Sotiredofcancer
13 Feb 2015
This is an answer to a question for Baneza. I hope this helps.
I completed 6 rounds of VCHOP chemotherapy in June 2013 for Follicular Non-Hodgkins Lymphoma. After VCHOP I was put on Rituximab infusions and have completed 4 so far and have 8 more to go for a total of 12 in 2 years. My side effects include:
SEVERE bone and joint pain, stabbing pains in my head like an ice pick, blurry vision (and sometimes blind in right eye), chest pain which feels like a heart attack, stabbing abdominal pain, SEVERE cough, chemo brain/fogginess, swelling/loss of movement in my hands, extreme fatigue all the time, numbness/pins and needles in my skin and/or feeling like my skin is "crawling", labored breathing, severe night sweats (sweat which takes the color out of my clothes and sheets like they have been bleached), sore throat and gums, pain in jaws/teeth, depression.
I hope this helps and I apologize for the length. Please let me know if you have any questions. Keep fighting!!
psbg
9 Feb 2015
Baneza hang in there it gets better. I too hurt like that when I get my infusions. It will pass. You may think it won't I know I did. But it will. It took me about 4 weeks to start feeling a lot better. I hate to say that because I don't want you to get discouraged it may not take that long for you. If you have any other questions I'll be glad to tell you what I've been through. I had all of those symptoms. I had to go up on my prednisone to get some help with the pain. Hugs to ya. Peggy
Baneza
9 Feb 2015
Hi Peggy.. Thank you for sharing your experience, I'm really desperate and so worry with this pain. I have Rituximab in Oct 2013 first time and I did no have any of this side effects.
Could you please tell me about your muscle and joint pain so I can be more relaxed and calm.. My pain is very bad, terrible, awful I can't hardly move walk or hold nothing with my hands now even my neck and shoulders are in pain..
psbg
9 Feb 2015
Hey Baneza my second infusion was worse for me as well. I had my second one in december of 2014. I am now feeling so much better. I dont know if the second infusion was like that for anyone else but I did meet a lady in the infusion room with me that told me it was like that for her as well. Overall this is the best medication I have had other than those side effects after the second infusion. I also got nauseated about 2 weeks after the infusion and they call me in some zofran for the nausea. Only lasted about 2 weeks then it was gone. I started my infusion in may of 2014 and I was also very shaky and weak. That too passed. I hope that this helps you and like I said my doctor had to increase my prednisone for a bit to help with the pain. I am on hydrocodone 3 a day but I had to have an increase in the prednisone to help even with that. Back down on my usual dosage of prednisone now. I hope I have answered some of your questions and that I have help you.
If you have any other questions please feel free to ask. I completely understand your concerns. I can tell you that you just have to be patient and let the meds work. That was not easy for me as I love to do things and get out of the house. I stayed close to the bed for quite sometime. hugs
peggy
psbg
9 Feb 2015
sorry the muscle and joint pain was awful while I was getting the infusion and for several weeks afterward. Like I said just hang in there it does get better...
balbanese
9 Feb 2015
That and more, check this out:
Related topics
influenza, idiopathic (immune) thrombocytopenic purpura, pain, tonsillitis/pharyngitis, muscle pain, rituximab, muscle, throat, symptom, infusion
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