I am new to this forum though not to health unlocked having previously been helped with my thyroid issues. I am hoping to be able to learn how to ensure my clotting issues are properly managed.
The first time I had Pulmonary Emboli the cause was a DVT ( I had previous phlebitis and varicose veins) which I had had for a few weeks and ignored. The PE manifested as increasing breathlessness, no pain and was described as being lots of small clots, spread out in both of my lungs. I was prescribed Rivaroxiban for 6 months and apart from having to take it with food or it would affect my stomach, I had no problem with it at all. It was stopped, by my GP after 6 months, no tests or preamble, just stopped.
The 2nd time around ( almost exactly 1 year after the first PE) there was no obvious DVT, they didn't even look for one. This PE came on in 1 evening, pain on breathing and was apparently a very large clot. My lung was unable to expand and contract smoothly due to the size of the clot. I was given Apixaban. Almost straight away I started getting pain in my veins, throughout both of my legs. Most of my obvious vein issues have been in 1 leg only so this was concerning. After a month or so I asked to be put back on Rivaroxiban instead and the pains have lessened considerably, about 20% of what they were.
I suppose it is not a bad thing if the pain is being caused by increased blood flow but why the difference between the 2 drugs if they are both doing the same thing. It doesn't seem logical that the drug with the shorter life in the body makes symptoms of leg pain worse.
Another question, why were my PE episodes so different? Is it because of the effect of the first drug on my veins? Was my 2nd PE caused by the changes in my blood clotting mechanisms brought on by the action of rivaroxiban and its subsequent rapid withdrawal?
What percentage of people who have taken this new generation of anti-coagulants for a DVT/PE end up having a second PE or die as a result of a clot? Do these same issues crop up with Warfarin?
I am considering asking to go on Warfarin instead and then monitoring my own INR after a while. Does anyone have experience of doing this? What about avoiding the drugs and using natural blood thinners instead?
From my experience of learning about my thyroid issues ( Hashimotos and genetic predisposition to problems converting T4 to T3 in the brain), I know this journey is going to be long and complicated but I know that those who have gone before me have the answers, even if my G.P. doesn't.
Thank you in advance