Well, I finally gave in and got the flu shots. Basically, my doctor did not really give me a choice. If I were to get sick again with the flu it could wipe out my immune system again. Having gone through that once it is not something I am eager to repeat. So I had the seasonal and H1N1 shots today. I am a little tired but that could be the low hemoglobin. In good news, my appetite has returned for the moment.
In bad news, I have developed cellulitis in my pyoderma gangrenosum scar from late 2007. It is quite painful, and pretty nasty looking. It is also a result of my immune system crash. I am on keflex orally and I am praying it goes away or I will end up on IV antibiotics. I have made myself clear though that they will have to put in some kind of a line because I really have no veins left. Plus I will likely end up on some kind of iron infusions to treat my low hemoglobin. The next treatment for colitis is also deliverd via IV. So, it looks like a PICC or port is in my future.
My hemoglobin held between Monday and Wednesday which is a great sign. I felt well most of yesterday and today. I can’t imagine how well I might feel when my hemoglobin goes from 87 to within the normal range (120-150).
I see the hematologist next week. It should prove interesting!
Since December 19, 2007 prednisone has been a steady medication in my life. I was started on it for the pyoderma gangrenosum I developed in November of 2007 when it was finally diagnosed correctly. Now you might be wondering why I am so happy to be off of prednisone. Well, the main reason is the sheer number of side effects which can be seen here and here.
Luckily I did not suffer all of the side effects. For some reason I do not seem to get the increased appetite side effect. I am not sure why but I have heard some people say they were so hungry on prednisone that they would eat Styrofoam. That is some serious hunger!!! I also did not gain weight on prednisone. I am not sure if the weight gain side effect comes because people are eating more or if it is just a side effect. I did get to enjoy some of prednisone’s other side effects. It affected my mood incredibly. I was depressed and anxious on it – especially at the highest dose of 80 mg per day. I have definately been slow to heal. I still have patches of shingles that are not healed – including the infected patch on my back. I have also had increased fatigue and weak muscles. There are other side effects I have had to deal with but I don’t want to bore everyone!
The other good thing about getting off the prednisone is that I get to go off of 2 other medications I was on to deal with the side effects. To deal with the emotional/mental side effects I have had to take clonazepam. I did have to wean off of this drug as the withdrawal looked a little scary. I can also stop taking pariet which I needed to deal with the stomach upset caused by prednisone.
Finally, to be off prednisone marks a huge victory in my battle with ulcerative colitis. The fact that I am off of it with no return of symptoms means that I am finally in remission. While the prednisone certainly helped get the symptoms under control it alone does not put colitis in remission. It is likely due to the imuran I have been taking since the beginning of January. As an immuno-suppressant, imuran works to depress the immune system so that it is no longer attacking my colon. Imuran is a drug given to transplant patients to stop them from rejecting the new organ. There are some serious side effects (including the risk of cancer – rare but it is there) however, given the choice between ulcerative colitis, losing my colon and taking imuran – I chose imuran. I am so looking forward to my health continuing to improve. For the first time in 3 years I am free of ulcerative colitis symptoms.