Patient leaflets and SmPCs, drug interaction checker, official dosages and NHS pharmacy opening hours — all in one place.
Patient leaflets and SmPCs, drug interaction checker, official dosages and NHS pharmacy opening hours — all in one place.
The electronic medicines compendium (emc) no longer publishes a Summary of Product Characteristics for this product, which usually means it is no longer marketed in the UK. The patient leaflet below is kept for reference, but the product may not be available.
If you were prescribed this medicine, other products containing Tofersen may still be available. Do not stop your treatment — ask your pharmacist or GP what to use instead.
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Qalsody contains the active substance tofersen which belongs to a group of medicines known as antisense oligonucleotides. This medicine is used in adults to treat a type of amyotrophic lateral sclerosis (ALS) caused by mutations (changes) in a gene called SOD1. ALS caused by mutations in the SOD1 gene is a rare type of motor neuron disease that affects the nerve cells in the brain and spinal cord. Mutations in the SOD1 gene cause a build-up of a toxic form of the SOD1 protein. This causes destruction of motor neurons (the nerve cells responsible for sending instructions to the muscle), leading to weakness and wasting in the muscles, including those used for breathing and swallowing. Qalsody works by reducing the build-up of SOD1 protein. This helps to prevent the destruction of motor neurons and may slow the loss of muscle strength.
2.
Qalsody
Qalsody must not be given if you are allergic to tofersen or any of the other ingredients of this medicine (listed in section 6). Talk to your doctor or nurse before you start treatment if this applies to you. Warnings and precautions There is a risk of side effects occurring after Qalsody is given by lumbar puncture procedure (see section 3). This can include headaches, back pain and infection.
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There have been a small number of reports of patients developing inflammation of the spinal cord (myelitis) or irritation or injury to the nerve roots (radiculitis) after Qalsody is given. You need to know about the symptoms of this while you are on this medicine. See Serious side effects in section 4 of this leaflet. There have been a small number of reports of patients developing swelling of the optic nerve in the eye (papilloedema) and/or an increase in the pressure around the brain (increased intracranial pressure) in patients treated with Qalsody. See Serious side effects in section 4 of this leaflet. Tests before treatment You may have a urine test (to check your kidneys) and a blood test (to check that your blood clots properly) before you start treatment. This is because other medicines in the same group as Qalsody can affect the kidneys and the cells in the blood which help clotting. These tests may not be needed every time you are given Qalsody. Children and adolescents This medicine should not be given to children and adolescents under 18 years of age. The use of this medicine in patients under age of 18 has not been studied. Other medicines and Qalsody Tell your doctor if you are taking, have recently taken or might take any other medicines. Pregnancy and breast-feeding If you are pregnant or breast-feeding, think you may be pregnant or are planning to have a baby, ask your doctor for advice before you are given this medicine. Pregnancy Qalsody is not recommended to be used during pregnancy and in women of childbearing potential not using contraception. Breast-feeding Your doctor will help you to decide whether you should continue breast-feeding or to start treatment with Qalsody. Your doctor will consider the possible benefits of treatment for you compared with the benefits of breast-feeding for your baby. Driving and using machines This medicine may affect your ability to drive or use machines. Do not drive or use machines if you notice a change in your vision with Qalsody. Qalsody contains sodium This medicine contains 52 mg sodium (main component of cooking/table salt) in each 15 ml. This is equivalent to 3% of the recommended maximum daily dietary intake of sodium for an adult. Qalsody contains potassium This medicine contains less than 1 mmol (39 mg) potassium per 15 ml dose, i.e. essentially 'potassium-free'.
3.
How Qalsody is given
The recommended dose is 100 mg tofersen. The first three doses will be given at 14-day intervals on day 1, day 15 and day 29 of treatment. Qalsody will then be given every 28 days.
2
This medicine is given by intrathecal (into the fluid surrounding the spinal cord) injection into the lower back by a lumbar puncture. This is done by inserting a needle into the space around the spinal cord. This will be done by a doctor experienced in doing lumbar punctures.
for Your doctor will discuss with you how long you will need to receive Qalsody. Do not stop treatment with Qalsody without talking to your doctor. If you miss a Qalsody injection If you miss a dose of Qalsody, speak to your doctor so that it can be given as soon as possible. If you have any further questions on the use of this medicine, ask your doctor, pharmacist or nurse.
4.
Possible side effects
Like all medicines, this medicine can cause side effects, although not everybody gets them. Side effects related to the lumbar puncture may occur while Qalsody is being given or afterwards. The
can include headache, back pain and infection. Serious side effects The most serious side effects seen in patients receiving Qalsody have been inflammation of the spinal cord (myelitis) or irritation and injury of nerve roots (radiculitis). Common symptoms may include:
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Common (may affect up to 1 in 10 people)
5.
Qalsody
Keep this medicine out of the sight and reach of children. Do not use this medicine after the expiry date which is stated on the carton after EXP. The expiry date refers to the last day of that month. Do not use this medicine if you notice particles in the solution or if the liquid in the vial is not clear and colourless. Store in a refrigerator (2°C – 8°C). Do not freeze. Keep the vial in the outer carton in order to protect from light. The vial of Qalsody in its original carton can be stored for up to 14 days at room temperature (store below 30°C). Unopened vials of Qalsody can be removed from and returned to the refrigerator, if necessary. Unopened vials can be removed from the original carton for not more than 6 hours per day at room temperature for a maximum of 6 days.
6.
What Qalsody contains The active substance is tofersen –
Each 15 ml vial contains 100 mg of tofersen.
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Each ml contains 6.7 mg of tofersen.
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The other ingredients are disodium phosphate, potassium chloride, calcium chloride dihydrate, magnesium chloride hexahydrate, sodium chloride, sodium dihydrogen phosphate dihydrate, water for injections.
What Qalsody looks like and contents of the pack Qalsody is a clear, colourless to slightly yellow solution for injection. Each carton of Qalsody contains one vial. Marketing Authorisation Holder and Manufacturer Biogen Netherlands B.V. Prins Mauritslaan 13 1171 LP Badhoevedorp The Netherlands 4
For information about this medicine, please contact the local representative of the Marketing Authorisation Holder: United Kingdom Bioge Idec Ltd Tel: +44 (0)1628 501000 This medicine has been authorised under 'exceptional circumstances'. This means that because of the rarity of this disease it has been impossible to get complete information on this medicine. The Medicines and Healthcare products Regulatory Agency (MHRA) will review any new information on this medicine every year and this leaflet will be updated as necessary.' This leaflet was last revised in May 2025 Other sources of information
For information in large print, CD or Braille please contact 0800 008 7401.
5
Qalsody 100 mg Solution for injection comes as injection containing 100mg. Always follow the dose your doctor or pharmacist has given you, and read the leaflet that comes with the medicine.
The active substance in Qalsody 100 mg Solution for injection is tofersen.
This leaflet reproduces the patient information leaflet approved for Qalsody 100 mg Solution for injection, as published on the electronic medicines compendium (emc). The version printed inside your medicine’s packaging is the one that applies to you.
Whether a medicine is available over the counter or on prescription only depends on its licence. Check the leaflet, or ask your pharmacist — they can tell you straight away.
The text above reproduces the patient information leaflet approved for this medicine, restructured for easier reading.
Qalsody is indicated for the treatment of adults with amyotrophic lateral sclerosis (ALS), associated with a mutation in the superoxide dismutase 1 (SOD1) gene.
Treatment with tofersen should only be initiated by a physician with experience in the management of ALS.
Qalsody should be administered by, or under the direction of, healthcare professionals experienced in performing lumbar punctures.
Posology
The recommended dose is 100 mg of tofersen per treatment.
Tofersen treatment should be initiated with 3 loading doses administered at 14-day intervals.
A maintenance dose should be administered once every 28 days thereafter.
Missed or delayed doses
If the second loading dose is delayed or missed, tofersen should be administered as soon as possible, and the third loading dose should be administered 14 days later.
If the third loading dose is delayed or missed, tofersen should be administered as soon as possible, and the first maintenance dose should be administered 28 days later.
If a maintenance dose is delayed or missed, tofersen should be administered as soon as possible. Subsequent maintenance doses should be administered every 28 days from the last dose.
Duration of treatment
The need for continuation of therapy should be reviewed regularly and considered on an individual basis depending on the patient's clinical presentation and response to the therapy.
Special populations
Elderly
Experience with the use of tofersen in the elderly is limited. However, from the clinical data available, the efficacy and safety of tofersen are expected to be similar to that of other age groups studied.
There is no evidence for special dose considerations based on age when tofersen is administered.
Renal impairment
Tofersen has not been studied in patients with renal impairment.
Hepatic impairment
Tofersen has not been studied in patients with hepatic impairment.
Paediatric population
The safety and efficacy of Qalsody in paediatric patients below the age of 18 years has not been established. No data are available.
Method of administration
Qalsody is for intrathecal use by lumbar puncture.
• It is recommended to ensure intrathecal access prior to removing the plastic cap from the vial and drawing up the tofersen dose.
• Just prior to administration, the plastic cap should be removed from the vial and a nonspinal anesthesia needle attached to the syringe for the purpose of withdrawing tofersen from the vial. The syringe needle is inserted into the vial through the center of the overseal to withdraw the required dose of 15 ml (equivalent to 100 mg) from the vial.
– Qalsody must not be diluted.
– External filters, including bacterial or particulate filters, are not required.
• It is recommended that approximately 10 ml of cerebrospinal spinal fluid (CSF) is removed using a lumbar puncture needle prior to administration of tofersen.
• Tofersen is administered as an intrathecal bolus injection using a lumbar puncture needle over 1 to 3 minutes.
Procedural preparation instruction:
• If indicated by the clinical condition of the patient, sedation can be considered.
• If indicated by the clinical condition of the patient, imaging to guide intrathecal administration of tofersen can be considered.
• Prior to removing the vial's cap on the aluminium overseal, readiness of the patient should be confirmed. An unopened vial can be returned to the refrigerator; for total time permitted, see section 6.3.
• Patients should be evaluated prior to and after intrathecal injection for the presence of potential conditions related to lumbar puncture to avoid serious procedural complications.
Following injection, standard post-lumbar-puncture care is recommended.
Hypersensitivity to the active substance or to any of the excipients listed in section 6.1.
Lumbar puncture procedure
There is a risk of adverse reactions occurring as part of the lumbar puncture procedure (e.g. headache, back pain, post lumbar puncture syndrome, infection).
Myelitis and/or radiculitis
Serious cases of myelitis and radiculitis have been reported in patients treated with tofersen. If symptoms consistent with these adverse reactions develop, diagnostic evaluation and treatment should be initiated according to the standard of care.
Increased intracranial pressure and/or papilloedema
Serious cases of increased intracranial pressure and/or papilloedema have been reported in patients treated with tofersen. If symptoms consistent with these adverse reactions develop, diagnostic evaluation and treatment should be initiated according to the standard of care.
Thrombocytopenia and coagulation abnormalities
Thrombocytopenia and coagulation abnormalities, including acute severe thrombocytopenia, have been observed after administration of subcutaneously or intravenously administered antisense oligonucleotides. If clinically indicated, platelet and coagulation laboratory testing is recommended prior to administration of tofersen.
Renal toxicity
Renal toxicity has been observed after administration of subcutaneously and intravenously administered antisense oligonucleotides. If clinically indicated, urine protein testing (preferably using a first morning urine specimen) is recommended. For persistent elevated urinary protein, further evaluation should be considered.
Excipients
Sodium
This medicinal product contains 52 mg sodium in each 15 ml, equivalent to 3% of the WHO recommended maximum daily dietary intake of 2 g sodium for an adult.
Potassium
This medicinal product contains potassium, less than 1 mmol (39 mg) per 15 ml dose, i.e., essentially 'potassium-free'.
No interaction studies have been performed.
The co-administration of other intrathecal medicinal products with tofersen has not been evaluated and the safety of these combinations is not known.
Tofersen is not an inducer or inhibitor of CYP450-mediated oxidative metabolism; therefore, it should not interfere with other medicinal products that interact with these metabolic pathways.
Pregnancy
There are no data from the use of tofersen in pregnant women. Studies in animals in which tofersen is not pharmacologically active do not indicate direct or indirect harmful effects with respect to reproductive toxicity (see section 5.3).
Tofersen is not recommended during pregnancy and in women of childbearing potential not using contraception.
Breast-feeding
There are no data on the use of tofersen during breast-feeding in humans. Available pharmacodynamic data in animals have shown excretion of tofersen in milk (see section 5.3). A risk to the newborn/infants cannot be excluded.
A decision must be made whether to discontinue breast-feeding or to discontinue/abstain from tofersen therapy taking into account the benefit of breast-feeding for the child and the benefit of therapy for the woman.
Fertility
There are no data available on the potential effects on fertility in humans. Toxicity studies in animals have indicated that tofersen would not appear to have harmful effects on male or female fertility (see section 5.3).
Tofersen has minor influence on the ability to drive and use machines. Patients who develop visual disturbance under tofersen should be cautioned to avoid driving or operating machinery.
Summary of safety profile
The serious adverse reactions in tofersen-treated participants were myelitis (2.7%), increase intracranial pressure and/or papilloedema (2.7%), radiculitis (1.4%) and aseptic meningitis (1.4%). The most common adverse reactions reported in tofersen-treated participants were pain (66%), arthralgia (34%), fatigue (28.6%), CSF white blood cell increased (26.5%), CSF protein increased (26.5%), myalgia (19%) and pyrexia (18.4%).
Tabulated list of adverse reactions
The adverse reactions are listed by system organ class and frequency using the following convention: Very Common (≥1/10); Common (≥1/100 to <1/10); Uncommon (≥1/1 000 to <1/100); Rare (≥1/10 000 to <1/1 000); Very Rare (<1/10 000); not known (cannot be estimated from the available data).
Table 1: Adverse reactions with Qalsody-treated participants in Study 101 and Study 102
System Organ Class (SOC)
Adverse reaction
Frequency
Nervous system disorders
CSF white blood cell increased*
Very common
CSF protein increased
Very common
Papilloedema‡
Common
Neuralgia
Common
Aseptic meningitis††
Common
Radiculitis†
Common
Myelitis§
Common
Musculoskeletal and connective tissue disorders
Arthralgia
Very common
Myalgia
Very common
Musculoskeletal stiffness
Common
General disorders and administration site conditions
Pain‡‡
Very common
Fatigue
Very common
Pyrexia
Very common
* CSF white blood cell increased includes preferred terms of CSF white blood cell increased and pleocytosis.
† Radiculitis includes preferred terms of radiculopathy and lumbar radiculopathy.
‡ Papilloedema includes preferred terms of papilloedema and intracranial pressure increased. See discussion in Description of selected adverse reactions (ARs).
§ Myelitis includes preferred terms of myelitis, myelitis transverse, and neurosarcoidosis. See discussion in Description of selected adverse reactions.
†† Aseptic meningitis includes preferred terms of meningitis chemical and meningitis aseptic. See discussion in Description of selected adverse reactions.
‡‡ Pain includes preferred terms of pain, back pain, and pain in extremity.
Description of selected adverse reactions
Lumbar puncture procedure
Adverse reactions associated with the administration of tofersen by lumbar puncture have been observed. The adverse reactions commonly associated with lumbar puncture are headache, back pain, post lumbar puncture syndrome, infection. The incidence and severity of these events were consistent with events expected to occur with lumbar puncture.
Myelitis and/or radiculitis
In the clinical studies, 4 participants receiving tofersen 100 mg reported serious reactions of myelitis (2.7%). The number of tofersen doses received before the onset of myelitis ranged from 5 to 15 doses. Two participants were symptomatic and 2 participants were asymptomatic. All 4 participants had abnormal magnetic resonance imaging (MRI) findings related to the event. Two participants discontinued treatment, and the event resolved. In the remaining 2 participants, the event did not lead to discontinuation of treatment (see section 4.4).
Two participants receiving tofersen 100 mg reported serious reactions of radiculitis (1.4%). The number of tofersen doses received before the onset of radiculitis ranged from 1 to 24 doses. Both reactions were symptomatic. One participant had abnormal MRI findings related to the event and one participant had a normal MRI. No participants discontinued treatment, and the reactions resolved with sequelae in one and without sequalae in the second participant (see section 4.4).
Increased intracranial pressure and/or papilloedema
Four participants receiving tofersen 100 mg reported serious reactions of increased intracranial pressure and/or papilloedema (2.7%). The number of tofersen doses received before the onset of increased intracranial pressure and/or papilloedema ranged from 7 to 18 doses. All 4 reactions of increased intracranial pressure and/or papilloedema were symptomatic. Four participants had an MRI with no findings pertinent to the event. One reaction finally led to permanent discontinuation of tofersen, one reaction led to interruption of tofersen treatment. All reactions were manageable with standard of care (see section 4.4).
Aseptic or chemical meningitis
Two participants receiving tofersen 100 mg reported serious reactions of aseptic or chemical meningitis (1.4%). The number of tofersen doses received before the onset of aseptic or chemical meningitis ranged from 5 to 7 doses. Both reactions of aseptic or chemical meningitis were symptomatic. One participant had an MRI with no findings pertinent to the event. One participant discontinued tofersen, and the other participant did not.
Reporting of suspected adverse reactions
Reporting suspected adverse reactions after authorisation of the medicinal product is important. It allows continued monitoring of the benefit/risk balance of the medicinal product. Healthcare professionals are asked to report any suspected adverse reactions via the Yellow Card Scheme.
Website: www.mhra.gov.uk/yellowcard or search for MHRA Yellow Card in the Google Play or Apple App Store.
No cases of overdose associated with tofersen were reported in clinical studies.
In the event of an overdose, supportive medical care should be provided including consulting with a healthcare professional and close observation of the clinical status of the patient.
Medicines sold in Romania with the same active substance: Cunoscut în România ca
Same active substance. The strength, the form and whether you need a prescription can differ. Always ask a pharmacist before you switch. Romanian medicines in the UK →
Medicines sold in Poland with the same active substance: W Polsce znany jako
Same active substance. The strength, the form and whether you need a prescription can differ. Always ask a pharmacist before you switch. Polish medicines in the UK →
Ask anything about Qalsody 100 mg Solution for injection. The assistant answers only from this leaflet — if the leaflet does not cover it, it will say so. It does not give medical advice.
Answers come from the patient leaflet published on the electronic medicines compendium (emc). They are not medical advice. Ask a pharmacist or your GP if you are unsure. For urgent help call NHS 111, or 999 in an emergency.
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