Hi all, I thought I'd offer an update to my earlier post. All advice has been appreciated.
To recap, 2 weeks after a stent insertion I stopped my beta blocker, ace inhibitor and statin due to increasing and crippling nerve pain. I remained on aspirin and clopidogrel. At first I was advised not to do this, but have since been told it is okay, but I do need to consider statins. Just over 4 weeks in and the nerve pain is increasing to intolerable levels.
On Friday I spoke with my GP who was more interested on getting me back on the beta blockers and statins than dealing with the problem I'm having with the essential blood thinners. His answer was 'speak with the hospital'. My point of contact is the rehab team, however we weren't able to contact them all day. Finally we spoke to a cardiac nurse who ensured rehab would contact us on Monday. She urged me to continue the two drugs if at all possible.
Having taken no drugs yesterday up until that point, I finally took the clopidogrel in the evening out of fear (I had been taking it in the morning). This resulted in a night of pain, but not as bad as it has been. This morning I have taken the aspirin and within an hour I can feel the nerves in my arms being damaged, but again, not the worst it had been.
Maybe separating the time when I take the meds will reduce the toxic load and hence the nerve damage. It is not a solution, but it does seem to have reduced the pain and rate of damage a bit. I'll try to stick with this regime.
As an aside, I've checked my make of stent which has CE approval for stopping DAPT after 1 month for those with problems (presumably bleeding). Maybe there is an intermediate solution where my dose of clopidogrel is reduced and see if that reduces the nerve damage. Maybe if I can get to 3 months before stopping I can reduce the risk of an adverse outcome.
It is difficult to judge, because from previous experience with nerve damage I know the pain does not go when the medication is stopped, it takes a number of months for the nerves to heal, possibly longer depending upon the extent of the damage. It can be difficult to assess the immediate impact of small changes.