Alport Syndrome

Medication for Alport Syndrome

Most of the people interviewed talked about taking medication. A few people like Jayne, Katie and Sarah were not on any medication for Alport Syndrome. People were put on medication at different times; Karen, Debra and Alison started blood pressure medication in their 20s, Patrick said taking medication was a normal part of his routine since he was a child and Mariam remembers her mum giving medicines to her when she was little. Both Michelle’s children were on medication as was Amanda’s son. Kevin says he was fortunate not to take any medication until his 20s. Medication usually increased and changed when someone went on dialysis and also after a transplant. Michael Y talked about possibly taking part in a trial for new medication.
The most common type of medication that people spoke about was blood pressure medication or “ACE inhibitors”. Most of these medications have names that end in “pril” such as Enalapril, Ramipril and Lisinopril. These types of medicines work by widening and relaxing blood vessels which lower blood pressure. Specifically, ACE inhibitors reduce blood flow into the tiny kidney filters. This has the effect of reducing protein leakage from the filters. Protein leakage from the kidney filters is damaging for the kidneys and if it can be reduced then this can prolong the life of kidneys. It is now recommended to start ACE inhibitors when protein in the urine develops.
People said they sometimes continued blood pressure medication during dialysis and after a kidney transplant to control high blood pressure (not protein in the urine). Steve said it was to “slow the progress of damage to the kidney” while Alison said it would “reduce protein leak” from the kidneys. Jayne said that her sons won’t go on ACE inhibitors until they reach a “certain level” of protein leak. Patrick said that his dosage of Enalapril had increased to “match” his slowly failing kidneys.
Sometimes people said they were not quite sure how the blood pressure medication worked. Angela was at first confused as to why she was being put on blood pressure medication. People spoke about trusting or having faith in their doctors prescribing particular medication. Michelle said that when she first started collecting her son’s prescriptions, the pharmacist thought he was too young to be on blood pressure medication and refused to give her the medication. He checked this with her son’s doctor. People also said they sometimes forgot to take their blood pressure tablets at times. Patrick felt that he was at the stage where forgetting to take some tablets would not affect him physically. Debra said she forgot her medication the odd time especially if she was away from home and out of her usual routine. Diane said her memory was “appalling” but now double checks and keeps her medication in special pots after her transplant. Mary and Philip said their son Anthony always remembered to take his medication.
Angela says that she was started on preventative blood pressure tablets even though she didn’t have high blood pressure. Several people said that when they started blood pressure medication that they had “good blood pressure” or sometimes even low or below average blood pressure. Robin says that at different times he had both very high and very low blood pressure: after his first transplant he had very high blood pressure. Lucy says that her blood pressure was “creeping up” a bit before her first pregnancy and it was then that medication was discussed. Sometimes people experienced dizziness or feeling light-headed taking blood pressure medication – some people took their tablets before bedtime to try and avoid these side effects.
After a transplant, people spoke about taking immunosuppressant medication or anti-rejection drugs and steroids. Richard Y said he was put on an “anti-rejection cocktail” of drugs whilst Alison said she was put on three different types of medication which was around twenty tablets a day. Alan said that he took eighteen tablets a day morning and night after his transplant, “I rattled”.
People spoke frequently about side effects of medication particularly from high doses of steroids and immunosuppressants. Kevin, Diane and Mariam all mentioned increased hairiness from Ciclosporin which is now not used as often. Richard Y mentioned “vivid daydreams” and “aggression”. Other side effects mentioned included getting a “kidney face” from steroid medication, a cough and tiredness. Alison said she experienced hair loss after taking immunosuppressants which she found very upsetting. Mary and Philip said they noticed a change in their son Anthony’s behaviour when he started taking steroid medication after his transplant (see Side effects of medication and treatment). 

Paul who has had three transplants and Robin who has had two, both noticed the changes and improvements in medication over the years. Robin said they had improved a lot. People expressed different feelings about taking regular medication but mostly people felt the benefits outweighed the risks. Alison said her hair loss was a “small price to pay”. Some people talked about taking blood pressure medication as an inconvenience while others treated it as part of a daily routine and said it was completely normal. Debra said, “my Dad used to have a kitchen cupboard dedicated to all the drugs that he took, so I'm not gonna complain about taking Ramipril”. At the same time people like Angela spoke about wanting to reduce some of her medication and not wanting to take more unless she knew what it was for.
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Many people spoke about taking other types of medication for other problems. Sometimes these were directly related to side effects from current medication or treatment such as from steroid medication after transplant or side effects from dialysis. People mentioned taking medication for stomach issues or ulcers; for heartburn; for anaemia; for constipation; for underactive thyroid as well as bladder control medication. Kevin, Robin and Dee spoke about taking “a phosphate binder” to keep phosphate levels low during dialysis. Calcium carbonate and calcium acetate are used as phosphate binders; they are taken with food and prevent phosphate absorption from the gastrointestinal tract. People spoke about having side effects from high levels of calcium in their blood such as “deposits” in their joints or stomach problems. Kevin had had a shoulder operation for this while Robin said it caused his tendons to rupture. At the same time people described experiencing symptoms (and taking medication for this) that might have been for an unrelated condition. For example Michelle said her daughter was put on the pill because she was “constantly bleeding” between periods.
People talked about going on internet forums and groups to discuss medication with others and sometimes seek advice (see Alport Syndrome: getting information). Karen said she looked up her medication online to find out about side effects while others had joined Patient View to monitor and see their own results (see Resources). People also spoke about travelling or going away and taking medication. Deborah took a doctor’s letter with her when going on trips over a month, while Patrick said he took all his medication and hearing aids in an airtight bag. Alison said she kept medication at her partner’s place so that she always had some when she stayed over. People also spoke about how they arranged dialysis abroad or on holiday (see Alport Syndrome - family life, hobbies and interests).

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