Treatment of peripheral neuropathy symptoms:
Medications that may help to alleviate neuropathic pain include gabapentin, pregabalin and duloxetine. Medical staff can give advice regarding appropriate foot care and footwear. This is important in order to prevent painless ulcers at pressure points and to protect areas of the foot that lack sensation.
Treatment of autonomic neuropathy symptoms:
If there is orthostatic hypotension (drops in blood pressure and faintness on standing up from sitting or lying positions), elastic stockings may be recommended. Patients may benefit from instruction in how to change position carefully from lying to sitting, sitting to standing and standing to walking. Drug treatment with midodrine or fludrocortisone may also be helpful to maintain blood pressure and allow higher diuretic doses. Care should be taken to avoid dehydration if there is vomiting and diarrhoea. Intravenous fluids and anti‑nausea drugs may be necessary, but it is important to avoid fluid overload if there is heart disease. There are drugs that can help to control diarrhoea and constipation, and others that can help to combat erectile dysfunction.
The place of new drugs in the treatment of ATTR amyloidosis is discussed here
Tips from an experienced patient
(Vince Nicholas, member of the UK Amyloidosis Advisory Group – diagnosed with hereditary ATTR amyloidosis, over 20 years ago, at age 35 )
Here are some tips for dealing with common symptoms:
Dealing with postural hypotension
1. After sitting down for more than 1/2 hour always stand for about 30 seconds before moving off.
2. If feeling light headed or you have ringing in your ears when walking, stand still for a few moments until it passes. Sometimes you can walk through it after some practice!
3. If it gets really bad always ask for help or sit down. I find it, in some cases good to hold onto my wife’s arm when walking distances.
4. I find that when I get a cold or virus the postural hypotension can get worse. I find it helps by taking the standard doses of paracetamol.
5. When getting up from bed in the morning I always sit on the side for a few moments before walking off.
6. Never run and always pace yourself.
7. Always allow more time than you think you need!
Dealing with painful neuropathy symptoms
1. I find doing weekly muscle build-up and light exercise at the gym helps a lot.
2. I find having a regular leg and feet massage eases my leg pains and stiffness.
3. Keep your legs and feet always moisturised.
4. Carry out daily hand exercise to keep them working.
Over the last 6 years since having my liver transplant I have found that by adjusting my diet my bowel problems have reduced:
1. By reducing the amount of wheat has helped a lot. I very rarely eat sandwiches, cakes and eat very little pastry.
2. I try not to have processed foods and have cooked food at lunchtime and in the evenings.
3. I have cut out sugar as much as I can. (Chocolate seems to still be good!!!)
4. I have cut out all beer and lager and tend to drink water, wine and some spirits.
5. I restrict to only having mild curries.