Alport Syndrome

Side effects of medication and treatment for Alport Syndrome

People spoke about side effects from medication and from treatment for Alport Syndrome (e.g. dialysis) or operations that they had. It can sometimes be difficult to pin down exactly what medication or treatment is causing a side effect, particularly as the effects can differ over time. People described adjusting their medication to try to reduce the side effects (described by Paul as a “constant balancing act”). People said that they often had to take other medication to counteract side effects from their primary or original medication or treatment. Diane said that she took steroids and anti-rejection drugs after her transplant, and that everything else she took was “to counteract what the medication does”. 

A range of side effects were associated with dialysis including tiredness and exhaustion, blood pressure increases and decreases, renal bone disease, insomnia, parathyroid issues and cramping. Dee said that not being able to drink much fluid on dialysis or eating much fibre, could cause constipation. People spoke about their bodies retaining fluid including getting ‘elephant feet’ which Steve said was very upsetting. Alan said that he felt light-headed when coming off dialysis, but this stabilised within ten or fifteen minutes. Dee and Karen both experienced arm and hand pain with carpal tunnel syndrome and issues with their calcium and phosphorous levels. Christine said that all the years that Paul had done dialysis in between transplants had taken its toll. Other people spoke about feeling better with dialysis saying that the side effects of renal failure were much worse than the side effects of dialysis.
People spoke about side effects from blood pressure medication including dizziness and light-headedness. Michelle said her son took his blood pressure medication before bed, but if he got up too quickly in the morning, he got dizzy. Debra also said she took her blood pressure medication before bed to try to reduce light headedness. Some people got a cough when taking blood pressure medication. Amanda said her son suffers from headaches and after doing some research on the internet and posting a message on a forum, she thought it might have been the brand of medication. 

People who had had a kidney transplant spoke about a variety of side effects from the medication that they needed to take afterwards. Often these were side effects from the steroids and immunosuppressant medication. Side effects including increased sweating, poor concentration, feeling sick, acute diarrhoea, ear infections, weight gain and metallic taste in the mouth. Increased hairiness was reported by several people who took older generation steroids like Ciclosporin. For Alison though, she had hair loss from her head which really upset her. 

Another side effect was the psychological and emotional effects of steroids and medication after a transplant. Richard X said he felt more moody with the steroids that he was on after his first transplant and like a “stroppy teenager”. Mariam said she had terrible hallucinations and Alison said she felt more emotional after her transplant. Other people said that they noticed a change in their behaviour. It was not always clear whether this was solely due to medication or a combination of this and going through a major life changing operation. Often having a transplant combined with taking medication triggered a lot of difficult emotions, sometimes prompting people to seek help and advice (see 'The emotional side of living with Alport Syndrome' and 'Alport Syndrome: getting information').
Many spoke about getting issues with their calcium and phosphorous levels, with people saying they had calcium deposits build up in their joints. Robin said he had experienced cardiac issues as a result of the calcification of his arteries. He had undergone advanced cardiovascular operations including a new pacemaker and heart valve. Other people spoke about having operations to remove their parathyroid glands, and to remove eye cataracts. Some people mentioned taking iron tablets to counteract anaemia. Several people mentioned having stomach issues ranging from indigestion to stomach ulcers as a side effect of taking medication.
People felt a range of different things regarding the side effects from their medication or treatment that they had undergone. Richard X talked about the medication that he took after his transplant and felt that it was not a big deal because it “keeps you alive”. Similarly, Kevin felt the adjustments made to his medication to lessen side effects were, “small potatoes” as overall he felt things were working quite well. Many people said they felt an immediate difference after a transplant, and saw side effects as a “small price to pay”. Debra said that she was not going to complain about just taking her one blood pressure medication. Michael Y said it was a just an inconvenience taking his blood pressure tablets. At the same time, others like Diane said she experienced horrific side effects. Angela felt there was really no choice whether to take post-transplant medication and tried to reduce some of the other medication she took.

Some people said that they didn’t feel the side effects from medication were too bad. Alison who was on steroids and immunosuppressants after her transplant, said overall she felt lucky as she didn’t get as many side effects as some people and her hair loss was nothing compared to possible kidney rejection. Michael Y who took blood pressure medication said he was “reacting fine” to his medication. People like Robin spoke about how medication had changed and improved over the years. Richard X said that “things have moved on a bit” when he thinks back to his first transplant medication. People also mentioned connecting with others online and checking whether the side effects they were experiencing were common.

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