@Marytres91 

Last reply

Marytres91

Ocrevus reactions

Hi guys , I had my first dose of ocrevus 5 weeks ago. I went in normal mobility and speech extra... an hour after receiving treatment my body went into shock and I had a number of fits and lost my speech . This went on for a couple of days and I was discharged with anti spasm meds .. However 5 weeks on and my spasms got uncontrollably and lasted for hours on Friday I had to get an ambulance to hospital, now it's not been verified whether these or spasms or fits or seizures. But my speech is very slow , it's like my brain knows what I want to say but I can't say it . To listen to me you would think I had a stroke.. the doctors aren't giving me much information and saying I will come normal in time.. Has this happened to anyone else ? I'm very frustrated. I was working and living on my own . I now can't work and living with my parents . I'm like a completely different person.. Any info would be grateful. Thanks
Donegal, Ireland
@Laure

I went through that symptoms in 2021 beginning of the desease, but I wasn’t taking ocrevus yet. But the only product I used was splina , it’s natural product, search online. It helps me for speech impairment, spasms, tremors, fatigue, tiredness, bladder distinctions, sex dis functional. Find the product and start using it and you will be fine. You might find it on Amazon, eBay,etc, it’s around 80$ cad

@Laure

This is all the side effects,it’s a document they gave before starting the infusion. Serious Side Effects Tell your nurse and/or doctor straight away or go to Emergency if you notice any of the following serious side effects: • yellowing of your skin or the whites of your eyes, darker urine than normal or unexplained nausea and vomiting - these may be signs of a liver problem and you will need a blood test  infection - this may include flu (fever or flulike symptoms); sinus or throat infection; urine infection (urinary tract infection or cystitis); infection of the airways or lungs (bronchitis or pneumonia); diarrhoea or being sick (signs of gastroenteritis); cold sores (oral herpes); tooth infection; laryngitis or fungal foot infection, or shingles (zoster)  Pancreatitis: severe pain in upper abdominal area which may spread to back, nausea, vomiting, fever  Severe skin reactions: any combination of itchy skin rash, redness, blistering, or peeling of the skin and/or the inside of the lips, eyes, mouth, nasal passages, or genitals. Very Common side effects (may affect more than 1 in 10 people)  Infusion reactions occur more frequently in the first three infusions and may include malaise, headache, chills nausea, fever. These can occur during the infusion or up to 24 hours after the infusion. Please let your physician or nurse know if you are experiencing any of these side effects. We try to reduce infusion reactions with pre-treating with steroids and antihistamines +/- acetaminophen.  Infusion reactions: itching, rash, shortness of breath, low blood pressure, fever, fatigue, headache, dizziness, nausea and heart palpitations (0.3% of infusion reactions were serious in the studies) Common side effects (may affect up to 1 in 10 people) • Decreased white blood cells: this can make you prone to infections, feeling unusually tired, fever, aches, pains, and flu like symptoms • Itching, sensation of throat swelling, rash Uncommon side effects (may affect up to 1 in 100 people) • Decrease in the number of blood platelets (thrombocytopenia) : bruising, bleeding, feeling unusually tired and weak • Increased feeling or sensitivity, especially in the skin; stabbing or throbbing pain along one or more nerves, problems in the nerves of the arms or legs (peripheral neuropathy) Very rare side effects (may affect up to 1 in 10,000 people) • Inflammation of the lung (interstitial lung disease). • Inflammation of the pancreas (pancreatitis). • Severe skin reactions. • An increased risk of malignancy with ocrelizumab is not proven but may exist. Patients are to follow standard breast cancer screening guidelines when on ocrelizumab. • Rare heart attacks have been reported in other drugs similar to ocrelizumab, but not in ocrelizumab itself. The signs of heart attack include shortness of breath, chest pain or heaviness, feeling a rapid heart beat, light-headedness, sweatiness Common side effects, which may show up in your blood or urine tests • Low levels of white blood cells (lymphopenia, leucopenia) in the blood. Reduced white blood cells could mean your body is less able to fight an infection. • Increase in levels of liver enzymes (ALT, AST) in the blood. If you get any side effects, talk to your nurse or neurologist. Who should not take Ocrelizumab Do not use Ocrelizumab, if you have had an allergic reaction (such as welts, hives, swelling of the face, lips, mouth or tongue, or difficulty breathing) to Ocrelizumab Do not use Ocrelizumab if you have active hepatitis B infection or immune system problems or if taking other immune suppressant drugs. Before taking and while you take Ocrelizumab, • Issues with your liver/ liver enzymes • Had / have tuberculosis • HIV + tell your doctor if you have or have had: • High blood pressure • History of Hepatitis B Tell your doctor if you are pregnant or plan to become pregnant after stopping treatment with Ocrelizumab or while using Ocrelizumab. Treatment should be discontinued when trying to conceive, and during gestation and breastfeeding. Consult your neurologist if you are trying to conceive or have become pregnant. Contraception You must use an effective method of contraception