When does this END!

Had first rituximab treatment yesterday. Started to have blood in urine this morning. My son never had blood like this in his urine it looked like cranberry juice. I almost had a heart attack to see that. Hemo said its not from drug but low platelets. Now going back on steroids even though they don't raise his numbers they must at least help with the bleeding. I hope doctor is right and it's not from rituximab. Staying in the hospital for a few more days. I feel like I'm in a nightmare and want to wake up already. It kills me to see my son go through this. I feel for all children and parents dealing with ITP.

Oh Val! Sorry to hear you are going through this. It IS scary at first, especially as most of us are unfamiliar with such things. Read on here as much as you can. Many of the people here are more knowledgeable than the doctors. For many hematologists, their speciaty is in oncology, and they may see very few ITP patients.

I am not sure if Rituxan can cause the red urine or not, but it may be possible. I am sure that someone will soon chime in. I know with my daughter's first treatment, WinRho, that was a side effect that they never warned me about. She was peeing cola colored urine and vomiting what looked like coffee grounds (whichis a sign of bleeding in the upper GI tract. If you read through this thread, Ann is very helpful in explaining the reason for it, and I wonder if the Rituxin might have a similar action. It wouldn't be the first time a doctor didn't know the full effects of their treatments--you will hear it on here all the time.

www.pdsa.org/forum/13-general-discussion-for-parents/26805-not-responding-a-active-bleeding.html?limitstart=0

im pretty sure rituxin doesnt cause that, low platelets definately does. itp more then anything is stresful, annoying, repetative, just try to rememeber it is manageable you will find that one thing that works patience is key or you will drive yourself nuts, just always remember it could be worse. rituxin could still work. if steroids dont cause a rise i would try to avoid them they did a number on me over the years i was happy when they stopped working. Good luck

A quick google check reveals that blood in the urine is a common side effectof Rituxan. This is from the Mayo Clinic website, a fairly reliable source:


Rituximab (Intravenous Route)

Side Effects

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor or nurse immediately if any of the following side effects occur:

More common

* Abdominal or stomach pain
* Black, tarry stools
* Bleeding gums
* Bloating or swelling of the face, arms, hands, lower legs, or feet
* Blood in the urine or stools
* Blurred vision
* Body aches or pain
* Chest pain
* Confusion
* Convulsions
* Cough or hoarseness
* Difficulty with breathing
* Dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
* Drowsiness
* Dry mouth
* Ear congestion
* Fever and chills
* Flushed, dry skin
* Fruit-like breath odor
* Headache
* Hives or welts
* Increased hunger
* Increased thirst
* Increased urination
* Itching
* Large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
* Lower back or side pain
* Nausea
* Nervousness
* Noisy breathing
* Pain or tenderness around the eyes and cheekbones
* Painful or difficult urination
* Pale skin
* Pinpoint red spots on the skin
* Pounding in the ears
* Shortness of breath
* Skin rash
* Slow or fast heartbeat
* Sneezing
* Sore throat
* Sores, ulcers, or white spots in the mouth or on the lips
* Stuffy or runny nose
* Sweating
* Swelling of the tongue or throat
* Swollen glands
* Tightness of the chest
* Tingling of the hands or feet
* Troubled breathing with exertion
* Unusual bleeding or bruising
* Unusual tiredness or weakness
* Unusual weight gain or loss
* Vomiting

Less common

* Blistering, peeling, or loosening of the skin
* Blisters in the mouth
* Blisters on the trunk, scalp, or other areas
* Burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feeling
* Burning, tingling, numbness or pain in the hands, arms, feet, or legs
* Decreased frequency and amount of urination
* Diarrhea
* Difficulty with moving
* Discouragement
* Feeling sad or empty
* Irregular heartbeat
* Irritability
* Joint or muscle pain
* Loss of appetite
* Loss of interest or pleasure
* Muscle cramps
* Muscle pain or stiffness
* Numbness or tingling in the hands, feet, or lips
* Pain at the injection site
* Pain, swelling, or redness in the joints
* Red skin lesions, often with a purple center
* Red, itchy lining of the eye
* Redness of the face, neck, arms, and occasionally, upper chest
* Stabbing pain
* Trouble concentrating
* Trouble sleeping

Incidence not known

* Abdominal or stomach cramps
* Blue-yellow color blindness
* Blurred vision or other change in vision
* Burning or stinging of the skin
* Decreased vision
* Dilated neck veins
* Dry cough
* Extreme fatigue
* Eye pain, tearing
* Feeling of discomfort, illness, or weakness
* Irregular breathing
* Nosebleed
* Painful cold sores or blisters on the lips, nose, eyes, or genitals
* Sensitivity of the eye to light
* Severe abdominal or stomach pain
* Severe vomiting, sometimes with blood
* Sores, welting, or blisters
* Swelling, stiffness, redness, or warmth around many joints
* Swollen and inflamed joints
* Swollen lymph glands
* Vision loss

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
More common

* Fear
* Increased cough
* Lack or loss of strength
* Night sweats
* Throat irritation

Less common

* Agitation or anxiety
* Change in taste
* Dry eyes
* Excessive muscle tone
* Feeling of constant movement of self or surroundings
* Heartburn
* Increase in body movements
* Lightheadedness
* Muscle tension
* Pain or redness at the injection site
* Sensation of spinning
* Sleepiness
* Swelling of the stomach

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

Thanks very much for the replys. I have found this board very helpful They want him to do a second course of rituximab in a few weeks and now I'm scared to death to do it with him having bloody urine after the first

I think that the usual protocol for rituximab is four doses over four weeks. There is an argument that you need less than this - two doses over two weeks. I don't think I've ever heard of people having the doses a couple of weeks apart. Maybe you could ask the doctor why they are suggesting this break in between the doses.

I'm going to speak to his hemo about the next dose of rituximab. I really feel the med had something to do with the blood in his urine. He has had blood in his urine for over 12 hrs now. It has gotton somewhat lighter. It went from cranberry juice color to a pink lemonade kind if color. Another scary symptom added to a bunch of other scary symptoms.

Hello My name is Rebecca my son and I live in Australia he was diagnosed with ITP 6 weeks ago and is about to start a course of steriods - does anyone no what his chances are of his platelets remaining at a high amonunt - I am very knew to this

It may be that they say blood in the urine is a side effect with rituxan when really the actual side effect is low platelets which then causes blood in the urine. That's often the case with these lists of side effects.