The good news is: normal mammogram, normal chest xray and normal colon cancer screening, AND the insurance company agreed to pay for the really expensive ($500+ per dose, one dose every 2 weeks) Humira medication!!
I just took my 3rd dose of Humira (the first 4 doses are once a week). I am feeling pretty good, but I can't really tell if it is the new medication working to put me into remission or just the prednisone keeping the symptoms at bay. I am a little better, less pain in my muscles and my hands are a lot better, less swelling and burning/tingling (but not totally gone), but the rashes are still the same. I see the rheumatologist on Sept. 10 and am curious what his criteria for improvement are. I think they will be lab test results--muscle enzyme measurements. I have elevated muscle enzymes caused by the inflammation.
The second half of the summer was much better than the
first. June was so stressful and in July I was so ill. Even though
long term prednisone use isn't good for you, it is allowing me to
function and even have some fun with my kids, so I am thankful.
Last week I got the results of a
sophisticated GI profile my dr. ordered. It revealed that I have a
common parasite (dientamoeba fragilis) and elevated yeast/fungi levels. I will probably need to
take antibiotics to kill the parasite, which will only cause
proliferation of the yeast/fungi, so then I will probably go on a
restrictive carb diet to starve the yeast. My dr. wanted me to
read over the test results and we'll discuss our plan of action at my
next visit after he talks it over with the rheumatologist.
I had an EMG last week which revealed extensive carpal tunnel syndrome--my wrist nerves are fried--no myelin, but that grows back. I also have proximal muscle weakness in my shoulders and neck, gluteus and hip muscles. It wasn't completely conclusive as to whether this is being caused by the disease or the steroids, because the steroids are masking some of the inflammatory symptoms, but the fact that I haven't been on the steroids very long and the pattern of muscle weakness--proximal (close to the spine) muscle weakness is a sign of the disease, leads the dr. to believe that it is being caused by the disease, not the steroids. This test really hurt, as opposed to the mammogram, which I was worried about since I haven't had one before and I am still nursing, and it didn't hurt at all.
It's ironic that God has sent me the sumo baby--my biggest by far and
a very fiesty, active kid that has to be wrestled at every clothing
and diaper change--at the same time that He sent me an illness which
gives me weak muscles.
So all in all it's better living through pharmaceuticals. I am just impatient to get back to totally normal again so I can do everything I used to do, like open jars and bottles, lift heavy stuff, lift anything over my head, and exercise. (The rheumatologist told me not to exercise while my muscles are inflamed because it will make it worse). I tire more easily too--I just have to take really good care of myself.
This summer was kind of a loss, but the good thing about it being summer when this happened was that the kids were home and have been really helpful, and Daryl was around more in the summer and he has helped a lot, too. I have also been blessed by having a great regular dr. who has taken great care of me while I waited for the rheumatologist appt.
Not Having Fun
3 months ago