Did you miss me 🙂
In the last year and a half I’ve changed jobs and changed countries, so things have been hectic to say the least. I think my last post I mentioned my platelet levels were dropping and so I had stopped Remicade. Normal (btw I’ve noticed that normal levels differ slightly between countries according to how the hospital or health department view the science) is from 100 to 400, and my platelets at the lowest dropped to 94. They went up to around 110 and last check was 134. My arthritis came back after about 8 months off the Remicade, and so my rheumatologist started me back on Enbrel. So for those on Remicade, you may have heard that once you stop Remicade the chance of having a life threatening reaction if you take it again is very high. However apparently there is not much research around about whether this is true or not (I guess since the numbers of people who try this is very low).
I attended a conference a few months ago and was surprised to meet a prominent US doctor who was on the panel of researchers involved in researching and doing the patent application for Remicade. I asked him about the possibility of reaction from restarting Remicade (since Remicade seems to have a better effect for me than Enbrel), and he believed that there is no research that shows there would be any greater risk than for example, me restarting Enbrel.
Anyway, I’m back on the Enbrel and don’t have any arthritis issues, apart from bad lower back pain after sleeping if I miss my dose for a few weeks. Only one dose per week (usually is two) and I self inject at home. My RLS still sucks and it appears that Lyrica isn’t doing anything for it – although I keep taking it as I think it is helping with my lower back pain from sleeping. Low doses of tramadol was helping for RLS but stopped working about 4 weeks ago. I started a RLS / Pain record again and have been meeting my doctor weekly to evaluate it. He decided to give me a break from tramadol as I had been pushing up the dose to more than 300mg per day to try and get the RLS down, and he has put me on percocet instead. So I’ve been off tramadol for about two weeks – and interestingly I’ve found my mood has vastly improved. I’m not sure if it is because the tramadol was inducing depression, or the percocet is making me feel wonderful (I’m taking 1 (5mg) about every 4 hours). Maybe it is both.
I’ve listened to a recent Joe Rogan podcast where he interviewed a really interesting guy called Wim Hof. Wim Hof has had his claims of being able to control his immune system verified through proper scientific studies through a University in the Netherlands. What he practices seems to be not too difficult to do, and I plan to start and see if I can influence my RLS.
I’ll let you know what happens.