Going off of the Prednisone

During the past seven to nine days or so I had been taking about 40mg prednisone daily in my little experiment to ensure that what I did really have was antiphospholipid syndrome.  Since I have this chronic anemia (hypothesized to be auto-immune and due to the APLS) on top of the migraines, I figured the prednisone would both keep my blood counts up by stopping auto-immune hemolysis, and would reduce inflammation in my blood vessels, potentially helping my migraines some, even though I did not yet have blood thinners.  I take all of this from the research - don't want to get into the research right here right now, because it would take too long.  But anyway.

So.  It seems that it DID work, and extremely well, with my anemia.  My hemaglobin is even higher than before, nevermind not just dropping, and without the addition of epogen over this period - kind of unheard of for me to make blood without epogen any time in the past several years, and my white blood cell count is higher too.  Also, my migraines have been much better (although not perfect) - but hey, I will TAKE MUCH BETTER - during this period of time with the prednisone.

Now the bad news.  We need to get a second set of good and accurate test results on all of this stuff without the prednisone to skew the results, so... you guessed it.  I have to come off of it for two or three weeks so that I can then go in and test without the prednisone potentially messing up the results.

One thing I will have is about 1mg of coumadin in order to thin the blood a wee bit, but to really be helpful for my symptomology I need a lot larger amount.  And of course, I won't get that until the second set of test results are in (three weeks or so from now) confirming the abnormal results I brought in today.  Also, I need to find a good neuro who is well versed in antiphospholipid syndrome so that my hematologist can speak with him/her and we can come up with a good treatment protocol.* 

*Note that I have already read enough studies to know exactly what the treatment protocol should be, so maybe I should have said that I'm looking for a neurologist to consult who agrees with the SOC tx protocol for patients in my situation ;)~  Because with the damage to some of my other organs, I think anticoagulant treatment is essentual (and not just to cut down on my headaches - but also because the syndrome has done so much scarring to my lungs they almost didn't let me go home yesterday due to my oxygen states being so low after surgery to put my port in, and I have three vascular masses in my liver thought to be from the antiphospholipid syndrome). 

Secondary to that one request for the agressive blood thinner though, I would leave it more open to the team, (hematologist and the rheumatologist and neurologist) to discusss a short (four week) burst of rituxin, which seems to help some people, and to discuss very low dose (5mg weekly) prednisone to help with blood count.  But on that first part, the anticoagulant treatment, I've read enough to know that I will not be happy budging from that protocol (if the tests turn out the same way they did last time), so its kind of the only non-negotiable I have in this.