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Symptomatic management of multiple sclerosis in primary care 

Rashid, Cox, Jackson, McFadden, Merriman, Vernon

This guideline was developed by a multidisciplinary expert panel: Rashid W et al with the support of a grant from both Bayer Healthcare and Novartis. The Multiple Sclerosis Society have endorsed this working party guideline. See bottom of page for full disclaimer.

Background

  • The cause of MS is currently unknown. The condition usually becomes apparent in early adult life, being diagnosed most often in people aged 20–40 years—in whom it is the most common cause of neurological disability—and only rarely in young children and adults aged >65 years
  • Multiple sclerosis affects both sexes, although women are three times as likely to develop the disease as men
  • There are four different patterns of MS—see full guideline for details

Diagnosis

  • Diagnosis of MS is difficult, as there is no simple diagnostic test, each patient has a different pattern of disease and symptoms, none of the symptoms occur only in patients with MS, and at least two episodes are needed before a definitive diagnosis of MS can be made (until then the patient might be said to have clinically isolated syndrome [CIS])
  • Early treatment can be beneficial for long-term prognosis, so it is important for primary care HCPs to identify patients with symptoms suspicious or indicative of MS
  • Bear in mind the typical patient profile for MS but do not limit suspicion to such patients:
    • Female
    • Young (20–50 years)
    • No other significant comorbidity/medications
    • Post-partum (or no children in the presence of urinary dysfunction)
  • The following symptoms indicate the need for immediate referral to a specialist neurologist:
    • Optic neuritis
    • Transverse myelitis (motor weakness, sensory disturbance, sphincter disturbance)
  • The following symptoms indicate the need for referral on a less urgent basis, depending on rate of accumulation and severity of symptoms (usually within 6 weeks):
    • Evolving sensory problems
    • Brainstem/cerebellar symptoms
    • Sphincter problems without other cause (e.g. post-partum)
    • Evolving neurological problems (particularly ataxia and spastic paraparesis)
  • For patients with the following symptoms, watch and wait for about 6 weeks with a suspicion of MS in mind (consider referral if symptoms are not resolving or new symptoms emerge):
  • Sensory problems excluding other causes
  • Vertigo (look out for evolution/other brainstem signs)
  • Facial pain
  • Pain in association with other neurological symptoms
  • The following symptoms when present in isolation are unlikely to result from MS:
    • Fatigue
    • Pain
    • Anxiety
    • Bowel disturbance in the absence of urinary dysfunction
    • Dizziness
    • Trigeminal neuralgia (except in atypical context; refer to NICE CG 96)
    • Cognitive deficits
  • Almost every patient with a recent diagnosis of MS will see their GP soon after diagnosis and will often have many questions:
    • Patients do not always want to know everything, especially in the early stages when they may feel overwhelmed, so give them essential information including points of contact, information leaflets, and details of patient support organisations
    • Ask them to notify you if they develop any new symptoms, have any questions or concerns, or if they feel that they need additional support
  • Ensure patients with a confirmed diagnosis of MS are referred to secondary care for appropriate therapy, rehabilitation, and specialist assessment

Treatment options for the major symptoms in MS

  • Once MS has been confirmed by a neurologist, continue to exclude other possible causes of symptoms before treatment

Pain

  • Pain is common, occurring in 30–90% of patients with MS; it often evolves over time
  • Patients often describe ‘the MS hug’—a feeling of tightness around the trunk that is associated with transverse myelitis
  • Non-pharmacological options can be useful:
    • Light and loose clothing, e.g. silk, can help with allodynia
    • Changes to footwear can help with foot pain
    • Identify and avoid trigger factors, where possible
    • Pain is often secondary to other symptoms, such as fatigue, gait problems, and lifestyle issues
    • Transcutaneous electrical nerve stimulation (TENS)
  • Topical and oral pharmacological agents may be used to manage pain in MS:
    • Topical treatments are used first-line for focal pain and as adjuncts to pharmacological agents:
      • Lidocaine plasters
      • Capsaicin—make patients aware of the potential associated discomfort and advise patients to check for skin abrasions and to wear gloves when applying
      • Some patients report benefits with topical rubefacient heat rubs
    • Oral drugs are the main approach for pain:
      • Basic analgesics can be useful for relief of general pain, including neuropathic pain and pain after beta-interferon injections, using (in order of escalation) paracetamol, ibuprofen, cocodamol, and tramadol
      • Tricyclic antidepressants are particularly useful for patients with sleep problems and neuropathic pain. Low doses should be used initially, with slow uptitration as needed and patients should be advised why these drugs are being prescribed
      • Duloxetine, which is indicated for neuropathic pain in patients with diabetes, is a useful alternative
      • Anticonvulsant (antiepileptic) medications are reported to be useful, although clinical evidence is weak:
        • Gabapentin is the traditional first choice, but NICE recommends first-line pregabalin
        • Minimise side-effects with a low starting dose (100 mg gabapentin or 50 mg pregabalin three times daily) and slow uptitration (every 2 weeks in small increments, or more quickly for pregabalin if pain is severe)
        • Pregabalin does have abuse potential in comparison to gabapentin
        • No guidance is available on switching between gabapentin and pregabalin, so the working party group recommend concurrent downtitration/uptitration
        • Carbamazepine is the drug of choice for trigeminal neuralgia
        • Lamotrigine is well tolerated, has a mood-stabilising effect, and provides occasional benefit, although there is no firm evidence in neuropathic pain
      • Opiates can be helpful for neuropathic pain but side-effects including constipation and sedation are a concern:
        • Fentanyl patches
        • Oral tramadol and oxycodone
        • Stronger opioids should be prescribed by the specialist pain team only

Referral

  • Refer to pain clinic if background or breakthrough pain is causing functional or social deficits, if adherence is poor due to side-effects, or for chronic pain syndrome
  • Refer to neurologist for facial pain, dermatomal pain, and distal lower leg pain due to possible nerve entrapment

Depression and anxiety

  • Clinical depression is more common in patients with MS than in patients with other chronic diseases:
    • Lifetime prevalence of major depressive disorder in patients with MS is 50%
    • Suicide is 7.5-fold more common in patients with MS than the general population
  • Depression affects carers as well as patients

Diagnosis and management

  • Manage depression as for any patient, while bearing in mind the high risk of severe depression and suicide in patients with MS:
    • MS nurses provide valuable support and can coordinate with GPs
    • Consider early referral to the community mental health team/psychological services
    • Non-pharmacological options:
      • Online and face-to-face cognitive behavioural therapy (CBT)
      • Talking therapy
      • Neurologists can provide additional expert support

Fatigue

  • Identify and manage modifiable causes, including sleep hygiene, depression, thyroid dysfunction, anaemia, infection, vitamin B12 and folate deficiency, vitamin D deficiency, lifestyle/work pattern, support, and drugs
  • Patients should be advised about self-management programmes, such as FACETS—if fatigue still persists, refer to other members of the MDT and liaise with the neurology team for further specialist advice

Spasticity

  • Look for and manage concurrent conditions that could be causing spasticity, including infection (particularly urinary tract infection [UTI]), constipation, skin integrity issues/pressure sores, and malnourishment
  • Assess lifestyle for helpful modifications
  • Pharmacological options:
    • The NICE guideline on MS provides useful advice on options for the management of spasticity, for example with baclofen, cannabis-based oromucusal spray, gabapentin, and tizanidine
    • Cannabis-based oromucusal spray is a licensed treatment for spasicity in patients with MS. However, it has not undergone a formal NICE technology appraisal
  • Refer the patient to the neurologist or MS rehabilitation team if two different agents fail to control spasticity

Motor function impairment

  • Rule out other causes of motor weakness, such as spinal cord injury and stroke
  • Non-pharmacological approaches include adapting the patient environment, e.g. using walking aids, lifestyle modifications, and functional electrical stimulation
  • Refer to local therapy services for specialist support
  • Refer to neurologist if patients experience rapid progression or acute onset of new symptoms, or fail to respond to non-pharmacological options

Cognitive function impairment

  • Cognitive dysfunction is common, affecting around 50% of patients, even those with early MS. It often presents as problems with executive function, organisational ability, and sequencing, but other symptoms can develop over time. It is not related to disease severity or progression
  • Check that the patient has true cognition problems rather than depression/anxiety
  • Have medication reviewed to minimise iatrogenic cognitive losses, look out for anti-cholinergics and sedating agents
  • Check thyroid function, vitamin B12 and folate levels, and treponemal serology
  • Rule out other causes of cognitive dysfunction, which can still develop in MS
  • Rule out UTI, which is a common cause of cognition problems
  • Liaise with the MS nurse
  • Refer to the neurologist or specialist MS team if the patient experiences:
    • Acute worsening of cognition in the absence of underlying causes, e.g. UTI
    • Rapid progression of cognitive dysfunction or signs of psychosis
    • Cognitive dysfunction in the early stages of MS

Bowel and bladder problems

  • Bladder problems are common in people with MS but can be effectively managed. Some people with MS will not experience any problems with the bowel, but constipation and bowel incontinence may affect people with MS at some stage
  • Urinary incontinence (UI) affects about 75% of people with MS:
    • May be related to bladder overactivity or incomplete bladder emptying:
      • Detrusor muscle instability is more common in early MS; as MS progresses, efficiency of bladder emptying reduces
    • Can be due to causes other than MS:
      • In men UI may result from prostatic disease
      • In women UI often follows childbirth
      • May develop due to medicines prescribed for fatigue, anxiety, and depression
  • Diagnosis:
    • Exclude UTI
    • Refer for post-void scan (via continence advisory service or MS specialist nurse)
  • Management varies depending on whether the patient has bladder overactivity or incomplete bladder emptying:
    • The NICE guideline on management of lower urinary tract dysfunction in neurological disease is a useful guide
    • Refer for neurological opinion if the patient has frequent UTIs or UI is resistant to treatment, or if UI is associated with loss of sensation
  • Most patients with MS experience constipation; diarrhoea also occurs but is often secondary to constipation:
    • Bowel dysfunction rarely develops before urinary problems in patients with MS
    • MS nurses can provide advice on lifestyle modifications including dietary modifications, exercise, and regarding fluid intake

Impact on sex, intimacy, and relationships

  • Sexual dysfunction is common, affecting 50–90% of men with MS and 40–80% of women

Managing relapses

  • A relapse is a new episode of symptoms or disability in the absence of fever or infection, which lasts at least 24 hours, is a neurological disturbance typical of MS, and occurs ≥30 days since the start of a previous episode:
    • Rule out infections and other reasons for worsening of symptoms
    • Patients may be on any of the medications listed below
  • Only certain forms of beta interferon may be used for secondary progressive MS with relapses, with other therapies used only for relapsing-remitting MS

Steroids

  • There is no role for long-term maintenance steroids, but short courses of high-dose steroids are used to hasten recovery from relapse
  • Seek advice from the neurology/MS team before prescribing steroids for MS relapses

Disease modifying therapies (DMTs)

  • DMTs reduce the frequency and severity of relapses:
    • ß-interferon
    • Fingolimod
    • Glatiramer acetate
    • Natalizumab
  • Only certain forms of ß-interferon may be used for secondary progressive MS with relapses, as per UK guidelines, with other therapies used only for relapsing-remitting MS
  • DMTs are prescribed by the hospital MS team—contact the specialist MS team and/or MS nurse for information about these drugs
  • None of these therapies are licenced for pregnancy

Stopping treatment

  • The decision to stop treatment will always be made by a member of the MS team; however, GPs can re-refer back to the team if you are concerned

Palliative care

  • Refer to palliative care if patients are not responding to usual symptom management and the following symptoms are progressing:
    • Reduced mobility
    • Speech and swallowing difficulties
    • Pneumonia
    • Aspiration
    • Hospital admissions
    • Reduction in function
    • Breathing difficulties
    • Pain
    • Spasms and spasticity
about this working party guideline…
sponsor— This guideline has been developed by MGP Ltd, the publishers of Guidelines, and the Working Party was convened by them. The guideline was developed by a multidisciplinary expert panel decided by the Chair. This working party guideline has been funded by both Bayer Healthcare and Novartis, but neither of the sponsors had any influence over the content of the guideline. Bayer Healthcare and Novartis were sent the scope and background reading documents for their information, however, final decisions rested with the Multiple Sclerosis Society and the Chair. The content is independent of any sponsorship, but has been reviewed and endorsed by the Multiple Sclerosis Society.
working party members— Waqar Rashid (Chair, Consultant Neurologist), Adrienne Cox (Multiple Sclerosis Nurse), Katy Jackson (Head of Prescribing and Medicines Commissioning), Estelle McFadden (GPwSI Neurology), Honor Merriman (General Practitioner), Karen Vernon (Multiple Sclerosis Nurse)
further information— call MGP Ltd (01442 876100) for a copy of the full guideline

 

First included: October 2013.