strange feeling during infusion | Arthritis Information
question for my smart friends...
When I was receiving my infusion today, I got the craziest feeling. I can only equate it too the restless leg syndrome people get in their legs, but it was all over. I managed to hide it from the nurse(I know, I should have told her, I know, I know....) There are dividers between the "infusion suites" so when she was with someone else, I could stretch and move around. Has this happened to anyone before?
I know I should have said something. I am just so incredibly frustrated with the situation medically that I didn't want to add another problem. I have an appt. with my RD tomorrow, I'll say something then.
2 weeks from tomorrow: jaw surgery. I am really really stressed about this one. It has to work. I cannot have a jaw replacement at 33..NO NO NO
I have no advice for you on this, maybe I am not one of your "smart" friends. I just wanted to tell you that I know how bad this sucks. I had my third child 3 1/2 months ago, I am 32 and it is all coming back. I was hoping I would be one of those stats that go into "remission" after pregnancy. No such luck, I hope you find some answers and your jaw surgery goes well for you.Hi Becca,
Guess what? I had my infusion today also. I had the exact same sensation. I call it the heebie-jeebies. It only lasted for a short time. Maybe 15 minutes I think. It makes me squirm. I didn't feel like it was anything too important and I've had it before. The other sensation that I get is a tingling tongue tip. It kinda feels like the beginning of a numming shot that the dentists give. Both sensations left and I soon forgot about them. I think that I was more concerned with the tingling tongue, small worry about maybe it's the beginning of swollen tongue, a possible side affect. I wasn't worried about getting the swollen tongue, I was worried about getting a swollen tongue and them discontinuing my rituxin infusions because of a bad side affect. My infusion came none too soon. My last infusion was wearing off and every day brought more inflammation and pain and fatigue. Anyway, I lived through it and will have my second infusion of this set in two weeks. I will certainly keep you in my thoughts concerning your jaw surgery and will expect it to be successful.
LEV
Oooooops,
I forgot about you asking for your "smart friends" request. Hope you don't mind that I answered anyway.
LEV
Heebie Jeebies...good description. It lasted for about 2hrs.
I totally get what you mean about discontinuing a med-always a fear.
Awww Reggie...of course you are one of my smart friends!
Also wanted to add that my muscles are incredibly "tired" right now--like I have been running.You really needed to mention it to the nurse. They would have been able to monitor you but also coorelate it to the dose point of the rituxan. That heebie jeebie feeling could be nothing or it could have been the start of an allergic reaction. Hiding it from th nurse didn't so you any favors. Talk to the dr but without the information the nurses would have been able to provide him with his hands are tiedI know it was stupid not to say anything. I am usually really good about relaying info. I never have reactions to meds, I figured an allergic reaction would be more dramatic.Becca,
After thinking about it, I think that the heebie-jeebies arrived after the benadryl and tylonol coctail and prior to the rituxin infusion. I can be mistaken but i don't think that i am. Anyway, as usual, I woke up with a sinusitis thing that i seem to aquire after every infusion but none the less, dropped a mg of prednisone this morning. Not much pain at all. Now all I have to do is get up and get going again. I guess I will tomorrow for sure. We are supposed to have our first snowfall and I always enjoy shoveling the snow, especially after it's done.
LEV
Rebecca - best wishes with your jaw surgery. What a bummer.
I'll be talking with my RD in a couple of hours about possibly starting these infusions. Why the benadryl/tylenol cocktail? Is it normal to be in pain after an infusion? I'm scared, not just of the infusion but of the cost.
Very scared but also in a lot of pain.
I've had that same sensation while getting my infusions. The nurses said that it was caused because my IV medication was given to me too quickly. I was told to get Leg Cramp medication. It's sold over the counter and it says Leg Cramps, on the front. It worked wonders! The nurses slowed down my next infusions to prevent it from happening again. I hope this helps!
Renee
Tara,
It is quite a comfortable experience. We have large sleeper chairs. A refridgerator with milk, juice and water and coffee. We have crackers and cheese and peanut butter and a large jar of candy. We can unplug our infusion monitors and walk around or use the bathrooms. They have heated blankets and we can ask for freshly warm ones. There are two large screen t-vs and one for movies and one for cablew and there are remote headphones for everyone if wanted. the headphones also have a radio in them. There are probably one nurse per three patients and they are always there. Lunch is served at 11:30. I have never been in the infusion room when anyone has had a reaction. Every thirty minutes our vitals are taken. between those times they are always asking, "how are you felling"? The benedryl is almost like a sedative. Anyway, here is some information from the rituxin website. If you have fears or concerns, there is a number where you can call and talk to a rituxin nurse. They are very kind, considerate and knowledgable and i would strongly advise you to talk with them concerning your fears. None the less:
Understanding RITUXAN Infusion Reactions
RITUXAN® is given by infusion—through a needle placed in a vein. When side effects occur during the infusion, they are called infusion reactions. Common side effects during RITUXAN infusions include: fever, headache, chills and shakes, nausea, itching, hives, cough, sneezing, and throat irritation. RITUXAN can also cause serious side effects, some of which may be life-threatening. Be sure to read the Medication Guide and full Prescribing Information before each RITUXAN treatment.
Your doctor may prescribe medication before each infusion to reduce side effects. And if reactions occur, they can usually be managed with standard medical care.
This information does not take the place of talking to your doctor about your medical condition or your treatment. Talk with your doctor if you have any questions about your treatment with RITUXAN.
Why do infusion reactions happen?
When RITUXAN enters the body, it sticks to B-cells that are circulating in the blood by attaching to a marker (called CD20) on their surface. In doing this, the B-cells may clump together, break down, and release substances called cytokines. Cytokines are part of your body’s natural immune response. One of their jobs is to raise your body temperature. But when B-cells are broken down, they may release a large amount of cytokines, which can cause fever, chills, and shakes.
The first infusion of RITUXAN usually clears out the B-cells in the bloodstream that have the CD20 marker. And they will stay gone for many weeks. So during the second infusion, there aren’t as many B-cells in the blood to release cytokines. While reactions may still occur, the possibility of having them is lower.
What if infusion reactions occur?
It’s common to have side effects during infusions, especially the first infusion. For that reason, the first infusion of RITUXAN is given slowly. The first time, your infusion may take 4 to 6 hours or more. After your first treatment, you may experience fewer reactions. That means your treatments may take less time. But everyone is different, and some treatments may be shorter or longer.
It is common for you to be given acetaminophen (Tylenol®) and diphenhydramine HCl (Benadryl®) before the RITUXAN infusion to reduce side effects. If infusion reactions occur, they are usually manageable. But if there is a particularly worrisome reaction, it may be necessary to completely stop the infusion. Once the effects of the reaction have gone away, your doctor may decide to start the infusion again at a slower rate.
Watch Oliver Press, MD, discussing cytokines and their role in RITUXAN infusion reactions
This information does not take the place of talking with your doctor. Discuss with your doctor any questions you have about your medical condition or your treatment.
INDICATIONS and IMPORTANT SAFETY INFORMATION
RITUXAN® is indicated for the treatment of patients with:
- Relapsed or refractory, low-grade or follicular, CD20-positive, B-cell NHL as a single agent
- Previously untreated follicular, CD20-positive, B-cell NHL in combination with CVP chemotherapy
- Non-progressing (including stable disease), low-grade, CD20-positive, B-cell NHL, as a single agent, after first-line CVP chemotherapy
- Previously untreated diffuse large B-cell, CD20-positive NHL in combination with CHOP or other anthracycline-based chemotherapy regimens
Important Safety Information
RITUXAN® can cause serious side effects, some of which can be life-threatening, including: progressive multifocal leukoencephalopathy (PML), infusion reactions, tumor lysis syndrome (TLS), and severe skin reactions. Other serious and life-threatening side effects with RITUXAN include: hepatitis B virus reactivation, heart problems, infections, and stomach and bowel problems. Common side effects during RITUXAN infusions include: fever, headache, chills and shakes, nausea, itching, hives, cough, sneezing, and throat irritation or tightness.
Tell your doctor about any side effects that bother you or that do not go away. These are not all of the possible side effects with RITUXAN. Ask your doctor for more information.
Please read the Medication Guide in HTML or PDF versions and the full prescribing information for more information.
Thanks for all the GREAT info LevLarry! I am also facing my first infusion and I am a bit scared. I have had to cancel it 3 times now because of "things coming up". TUesday was cancelled because my son has swine flu. Not a big deal for him (30 yr old healthy guy) but could be deadly for us.
Larry, thank you so much for that information. It is a comfort to know that your infusions help you and especially thank you for the info on how it goes while you are in there.
Kathy - best wishes to you and also to your son, I hope he pulls out of the flu ASAP and all are OK.
Renee - that Leg Cramp info is gold to me. I get foot and leg cramps and already have that homeopathic med in my medicine chest!!!! if I start Rituxan will definately take prior to infusion.
Green~Tara2009-12-09 13:25:45I just had my first Rituxan infusion at the Mayo Clinic on Tuesday. I always got body aches after remicade but the Rituxan really hurt. I am sure a normally 90-2hr drive to the cities that went on for 4 because of the Blizzard did not help but that first night I wanted to die. Yesterday I had a headache, body aches, fatique, chills, hot flashes and hmm think that is it. This morning I feel like I am getting a sinus infection. I have heard great things about the Rituxan working. So I am trying to stay positive. Tuesday night I swore I was not going back in two weeks but today I just made the appt for my second infusion. The Mayo Clinic has a great set up. Private rooms, adjustable beds, tv with on demand movies, and those toasty warm blankets. I love going there for the remicade. I hate the Minnesota winters they are so unpredicatble and I am a baby for a snowflake. So the Rituxan sounds wonderful if it works and I can go six months or longer before a course.
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