Your Healthcare

Can I remain fit and well now I’m living with HIV?

The short answer to this question is yes, absolutely! It can sometimes feel that our health will never be the same and living with HIV is going to make things more complicated. In this section we look at the role your HIV clinic team play in your health and wellbeing, together with your wider healthcare needs, including those provided by your GP, dentist, optician and hospital inpatient services.

Your regular clinic visits

Regular clinic visits are an essential part of living well with HIV and provide an opportunity for you and your clinic team to discuss your treatment and care, together with your wider physical and emotional wellbeing. We are all different in our approach to living with a long-term health condition and discussing your individual needs is a key part of the ongoing care you receive.

How often should I be going to my clinic?

Once everything has settled down the majority of people usually attend clinic at 6 monthly intervals. It’s important that your individual circumstances are taken into account and if you’d like to be seen at more frequently for a period of time discuss this with your clinic team. Where possible it’s useful to have bloods taken a couple of weeks prior to your review so the most up to date results are available to discuss with your Dr. or other members of your clinic team.

Considerations that may require more frequent visits

  • CD4 cell count below 350 or presentation of advanced HIV infection
  • Where treatment is used as a method of prevention
  • Return to detectable viral load above 50 whilst on treatment
  • Changes to medication or development of side effects
  • Other conditions such as viral hepatitis or tuberculosis
  • Pregnancy and postnatal care of mother and infant

What to expect at your regular clinic visits?

6-monthly clinic monitoring should include the following:

  • HIV viral load test
  • Liver and kidney function tests
  • Urine sample where treatment includes tenofovir
  • Bone profile
  • Symptom guided physical examination

Annual clinic monitoring should include the following:

  • HIV viral load test
  • Liver and kidney function tests
  • Urine sample
  • Bone profile
  • Full blood count
  • Cholesterol and triglycerides1
  • Cardiovascular risk assessment2
  • Hepatitis A and B immunity check
  • Hepatitis B and C antibody screening3
  • Syphilis blood test4
  • Check annual flu vaccination
  • Check Hep B vaccine course or boosters if relevant
  • Check completion of HPV vaccination course if relevant
  • Check completion of annual cervical smear if relevant
  • Symptom guided physical examination

1 required for all who smoke, have a BMI over 30, or over 40 years old.
2 required for all who smoke, have a BMI over 30, are diabetic, or over 40 years old.
3 based on exposure risk.
4 based on exposure risk, men who have sex with men every 6 months.

Telephone and e-clinics

Telephone and E-clinics are becoming more popular as a way to manage your treatment and care. When enrolled as a telephone or e-clinic patient, you’ll usually see your Dr in person once a year, although bloods are still requested at 6 monthly intervals. It’s worth asking your clinic if this option is available. Telephone and e-clinics are usually available to patients who have had stable results for a period of time.

Your CD4 and viral load monitoring

The British HIV Association (BHIVA) guidelines for the routine investigation and monitoring of adults living with HIV recommend routine CD4 cell monitoring as detailed below.

Where an individual is on treatment and has sustained undetectable viral load, the following is recommended:

  • CD4 count less than 200 check at 3 to 6 monthly intervals
  • CD4 count is between 200 and 350 check annually
  • CD4 count above 350 and stable over 2 occasions greater than a year apart there is no requirement for further CD4 cell count tests to be taken as long as viral load remains undetectable

Where an individual has decided to delay starting treatment, the following is recommended:

  • CD4 count less than 350 check every 3 months
  • CD4 count between 350 and 500 check every 6 months
  • CD4 cell count above 500 check annually

Local clinic and regional guidelines may differ as it’s recognised that some people will have concerns where CD4 count is no longer checked annually. It’s worth noting when viral load is consistently undetectable your CD4 count will find a natural set point, which doesn’t vary much over time.

Talk to your clinic team about the level of monitoring that works for you best. Most doctors and clinic teams will be happy to discuss changes in monitoring and providing a more individual approach where this is thought to be beneficial.

Changes in your viral load

You can expect your viral load to remain at undetectable levels as long as you take your medications every day as prescribed. Occasionally some people find their viral load becomes detectable for no obvious reason. In most cases this is nothing to be concerned about and is often the result of a lab error. It’s important that any change is viral load is investigated by your clinic team promptly. If your viral load rises above 200 you cannot rely on treatment as a method of prevention, therefore additional precautions should be taken to prevent HIV being passed onto sexual partners.

Viral load blips

A blip is said to occur when a single viral load result is between 50 and 200 which then returns to undetectable upon re-test. A re-test should be completed between 2 to 6 weeks after the detectable result depending on the treatment regimen you’re taking.

It’s good practice for your doctor to ask about treatment adherence, if you’ve been prescribed any new medicines or recently taken any over the counter remedies. Sometimes illness with severe sickness or diarrhoea may reduce the absorption of your medication, so it’s important to tell your doctor about your general health or anything else you think might be relevant.

Viral load consistently above detectable levels

A small proportion of people sometimes find their viral load remains above 50 but below 200. The technical term for this is low level viraemia (LLV). Ideally when LLV is suspected, resistance testing should be attempted, although it may be difficult to get a result at lower levels of viral load.

A change in your treatment combination may be suggested whilst waiting for the results of a resistance test. It’s important that your doctor clearly explains that in most cases LLV isn’t anything to be concerned about and is often resolved by a change in one or more drug components in your treatment.

A small number of people never achieve a viral load below 50. This can be a source of anxiety and it can feel like a personal failure. Talk to your doctor about this and discuss what actions can be taken to improve things.

Changing treatment because of suspected drug resistance

If viral load continues to increase, changes to your treatment combination will be needed where treatment failure is suspected. Sometimes a change in treatment to include the boosted protease inhibitor darunavir or the integrase inhibitor dolutegravir will be considered whilst waiting for the results of the resistance test.

Once the resistance test results are available your doctor will usually discuss your case with a virtual treatment clinic to arrive at the best change in treatment for you. Some doctors add a further drug to an existing combination however this isn’t currently recommended by BHIVA.

Your GP and day to day health

The majority of specialist HIV outpatient clinics now have a clear focus on the treatment and management of HIV as a long-term health condition. Many clinics are no longer able to provide wider healthcare support and will often suggest you contact your GP for non-HIV related symptoms or conditions. GPs are often more experienced in the management of many day to day health conditions and provide a wide range of additional support services.

You don’t have to tell your GP or any other primary care health professional you’re living with HIV, it’s a personal choice. It can be beneficial to share this information with your GP to enable him/her to better manage your general health and wellbeing. Some of the advantages of telling your GP you’re living with HIV include:

  • Co-ordinating your overall health care, exchanging information between your HIV clinic (where this has been agreed) and other outpatient or inpatient services you may also attend
  • Arranging referrals to hospital-based services, sometimes referred to as secondary or tertiary services including specialist medical, surgical and psychiatric services
  • Administering routine vaccinations including the annual flu vaccination together with the pneumonia vaccination
  • Prescribing ongoing medications your HIV clinic has advised should be taken for other conditions, notably high cholesterol, blood pressure and pain management as examples
  • Smoking cessation, drug and alcohol support, counselling, and other lifestyle improvement and prevention services are often provided by larger GP practices

Confidentiality and privacy concerns

Many people living with HIV have concerns about privacy and confidentiality when it comes sharing information with their GP, dentist, optician or other healthcare professional.

There is no right or wrong answer here, but it’s important to understand everyone involved in your care has to comply with policies relating to patient confidentiality, privacy, data protection policies. Non-NHS organisations may provide some personal information to your employer if you have been referred as part of a company or corporate health care plan.

If you have concerns about privacy and confidentiality you may wish to discuss the following points with your clinic team, GP or other healthcare provider prior to sharing sensitive information about HIV.

  • Talk to the practice or clinic manager about the systems they have in place to protect your personal information and data
  • Ask which members of staff at the practice have access to sensitive information such as diagnosed conditions, medications prescribed and outpatient reports and letters
  • Ask how letters and reports are entered onto electronic systems and how hard copies are stored or if and how they’re destroyed
  • Discuss any concerns you have ‘off the record’ with your regular GP, dentist or optician about sharing HIV related information. Seek assurances this information is available only to the staff directly involved in your care and treatment
  • Discuss the information which is held on your GP practice Summary Care Record (SCR), and if you would like your HIV medication included in your SCR

National AIDS Trust have produced a document entitled ‘Confidentiality in the NHS: Your information, your rights’, which you may wish to read prior to sharing information relating to HIV with your GP or other primary care services.

Who to see? GP or clinic team for day to day health concerns?

Deciding if a health problem is HIV related can be difficult and a source of anxiety. As a general rule it’s probably appropriate to see your GP for common health conditions, those which you would visit your GP for prior to your HIV diagnosis.

More complex health conditions such as asthma, diabetes, high blood pressure, arthritis, respiratory conditions, skin disorders are usually best managed by your GP. They assess and treat many more cases on a daily basis than HIV specialist doctors, and therefore have more clinical experience of managing these conditions.

Any medications your GP prescribes need to be checked for possible interactions with your HIV medications. This is particularly the case if your combination contains a boosting agent such as cobicistat or ritonavir. Boosting agents can increase drug levels of other medications which can cause additional side effects and result in unexpected reactions and complications.

Some of the more common drug/drug interactions can occur in some of the following medication groups:

  • Statins
  • Steroids, including some asthma inhalers
  • Hormonal contraceptives
  • Some antibiotics
  • Blood pressure and heart medications
  • Some sedative or medications to aid sleep
  • Erectile dysfunction medications
  • St John’s Wort, herbal remedies and certain other over the counter remedies

The best advice is to check with your HIV clinics pharmacist or check the HIV Drug Interactions website. If in doubt always check it out!

Vaccinations provided by your GP and other community services

Many individuals living with a long-term health condition are advised to make sure their vaccination history is up to date and to have additional vaccinations to prevent avoidable illness.

BHIVA recommend people living with HIV have the seasonal flu jab every year and consider having the pneumonia vaccine. Both these vaccinations are usually provided by GPs, some community pharmacies, and midwife services.

Travel Vaccinations

The majority of travel vaccinations are safe for use with people living with HIV, although it’s helpful to discuss any travel plans with your clinic team well in advance of when you plan to travel if you require additional advice. Travel vaccinations are usually provided by GPs and should be administered in advance of travel to ensure good levels of immunity are achieved.

The exception to the above are vaccinations for the following:

  • Yellow fever – discuss with clinic team. The vaccine is age dependant (less than 60 years) and CD4 count needs to be above 200
  • Typhoid – discuss with clinic team as there are 2 vaccines available. Use of the oral live vaccine should be discussed with your clinic Dr and may not be available through your GP

If you’re unsure about your vaccination history or which vaccinations you require for travel, discuss this with your GP in the first instance. Should there be any concerns get further advice from your HIV clinic team.

Your wider healthcare needs

Planned hospital admission

People living with HIV who are admitted to hospital should expect to receive the same level of care and treatment as anyone else. Some people have concerns about maintaining confidentiality whilst in hospital, particularly where family members aren’t aware of their HIV status.

For planned admissions (day surgery or a longer inpatient stay) you may want to think about the following points, so you feel well prepared for going to hospital:

  • You may wish to contact your HIV clinic team prior to a planned admission if you have any concerns about the impact HIV may have on the procedure or in relation to your HIV medication
  • Explain to your hospital specialist you’re living with HIV and provide an overview of your most recent results. Ask how this information will be recorded and who will have access to it
  • Let the hospital team know what medications you take and that they need to be taken on a daily basis. This information is often asked for during a pre-admission or pre-operative assessment
  • Ask about any food and fluid restrictions you should observe prior to admission or on the day of the procedure. This is helpful to know if your medication has a food requirement
  • If you’ll be in hospital for a few days, ask the ward team if you can continue to take your HIV medications you’ve been prescribed by your HIV clinic. If not make sure you’re happy for the ward staff to prescribe and administer your medications, bearing in mind your confidentiality and privacy.

Emergency hospital admission

In the event of emergency admission some people worry about communicating their HIV status to the emergency team who are looking after them. As with any other hospital admissions people living with HIV should be treated in the same way as any other patient. Where possible it’s desirable to share information about HIV the emergency team looking after you and the medications you’re taking.

Sometimes it may not be possible to take your medications at the usual time which can be a source of anxiety. The best thing to do in this situation is to take your medication when you’ve been advised you can drink or have something to eat. It’s not a problem if you have to miss a dose, just take it at the usual time the next day if this is possible.

In the unlikely event you’re unable to take your HIV medication for several days try not to worry. When you’re well enough or able, talk to the ward staff and make arrangements for further advice to be provided by your HIV clinic team prior to restarting.

Dental and optical health

Ongoing HIV related oral and optical health problems aren’t frequently seen these days, although can be a concern at lower CD4 cell counts prior to starting treatment for HIV. Where your clinic team have any concerns, they will arrange the necessary referrals to specialist services for further investigations.

There is no legal requirement to share information about HIV with your dentist or optician and the decision to do so should remain a personal choice. If you receive dental or optical health through an occupational healthcare package, you may wish to discuss what information is provided to your employer to safeguard your privacy and confidentiality.

Some oral health conditions are observed more frequently in people living with HIV particularly where CD4 cell count is below 350. Having regular 6 monthly dental check-ups can ensure any problems are identified and treated promptly.

Mild oral thrush (candidiasis) is relatively common among people living with HIV particularly where CD4 count is around 500 or below. It can be easily treated with antifungal medication such as fluconazole or similar antifungal medication.

Some HIV medications can cause dry mouth which is associated with tooth decay, gum disease, oral thrush and other infections. If you have ongoing difficulties with dry mouth, discuss this with your clinic team as there may be treatment options which are less likely to cause dry mouth.

The human papilloma virus (HPV) can result in the development of abnormal cells in the mouth, which when left untreated can progress into pre-cancerous cells. The HPV vaccination is effective at reducing the risk of developing HPV related oral health problems.

HIV associated eye problems are rare, particularly when someone is taking HIV treatment and has a CD4 count above 200. If you have any concerns about a change in your vision you should discuss this with your GP, ophthalmologist or HIV clinic team if HIV involvement is suspected.

Where eye problems are identified by your GP or HIV team, they will usually arrange for referral to a specialist service, and work closely with ophthalmologist involved in your case. In most cases eye conditions respond very well to HIV treatment and resolve as CD4 cell count increases over time. Occasionally there is a need for additional treatment to ensure any changes in vision can be restored. As with anything else, if in doubt get it checked out!