Chair: Dr Simon Hincks
Speakers: Dr Rita Browne, Chelsea and Westminster hospital, Dr Jyoti Dhar, University Hospitals of Leicester, Dr Ed Wilkins, Manchester Royal Infirmary
Rapporteur: Peter Noble, NLTSG
This informal question and answer session was attended by 25 people. Participants got the opportunity to have discussions with HIV doctors about the following:
Working full-time was difficult when experiencing tiredness. HIV medication can cause this but there could be other reasons for tiredness so it is important to check iron and testosterone levels, along with other blood tests.
Chronic fatigue could be related to HIV drugs, post viral fatigue or other problems, even those relating to post traumatic stress syndrome.
It is important to check whether there would be any reactions with HIV medication before embarking on any alternative therapies.
Some people may want to stop medication, perhaps to take Hepatitis C (HCV) treatment or just to have a break. The increased chance of resistance means that it may not be a good idea to stop and start treatment. HIV replicates in the lymphatic system, in brain and spinal fluid and this increases the chance of drug resistant strains of HIV developing. There is not enough information available to recommend stopping HIV treatment to take HCV treatment and it would have to be an individual decision.
Several people mentioned having problems with side effects, in particular with Sustiva. These included depression, disturbed sleep and nightmares. Some side effects had continued even after finishing the drug several months/years earlier. Despite this, the HIV doctors present agreed that Combivir/Sustiva are the drugs of choice for patients and in general are safer.
Ritonavir has to be taken with a full-fat meal and there was discussion about what this means. It could be a traditional cooked breakfast or full-fat dairy products like yoghurt, cheese or a milk drink.
There was a discussion about what to do about medication when travelling across different time zones. It is important to plan this in advance. Some centres have an adherence nurse who would be able to help with this prior to travelling, otherwise discuss with your HIV doctor.
Some participants who were too shy to ask their questions within the session were able to speak to the doctors at other times during the conference. The doctors present were more than happy to help and contribute, as Dr Jyoti Dhar highlighted:
“ It was wonderful to see how empowering patients can only be good for the management of their health.”
Participants welcomed the opportunity to ask questions and discuss issues with doctors
Clearer guidance is needed about taking medication with food and what this may mean
There should be more opportunities to ‘ask the expert’, particularly online
This workshop was evaluated by 25 people. There was a wide age range, the youngest participant being 24 and oldest 62. The average age was 42.
Gender
12 male, 11 female, 2 not stated
Ethnicity
12 white, 8 black African, 4 not stated, 1 other non-white
Sexuality
15 heterosexual, 7 gay, 3 not stated
Usefulness
Very useful |
Useful |
Not useful |
76%(19) |
16% (4) |
8% (2) |
13 people set themselves action points.
The majority (60%) said they would talk to their doctor again and ask more questions
Make sure my doctor is more involved
Will ask the doctor about my fears
Ask doctors more about medication
The rest set themselves other goals
Be a friend to my GP
Probably stay on treatment, change one drug
Continue my treatment
Demand my personal needs to be met
Open up more
Move on to Relationships