ITS CHRISTMAS! ... Well maybe not really

General
1

Lol the title says it all.

Despite being in tremendous pain (for which tylenol, naprosyn, and tramadol do nothing) in my eyes, today it is Christmas. Why is it Christmas? Good question. Earlier yesterday I broke down and called my doctor. Within the last two days my usual, slightly tolerable, joint pain has gone full on flare mode. Its not to the point where I can no longer walk quite yet, but I am afraid it is heading in that direction. Anyway, I called my doctor who called me back an hour later (surprisingly quick for him). I must have sounded really bad on the phone because he broke down and agreed to add 10 mg of prednisone for the next two days until I see him tomorrow.

Hence, this is why it is Christmas. :D

I am finally back up above 10 mg (10 + 10 =20), and while that scares me, I am overjoyed since I know my flare will start to go away. I did phenomenal on 12.5 so I'm not terribly worried. What does trouble me and my mom is that we will have to taper again which means more time on the prednisone.

At this point, my mom and I are pretty gung-ho about cellcept. I mean my doctors all say they want me off the prednisone ASAP. The problem is that it is a double edged sword. On one hand, I cannot survive without the prednisone. It took three days (when I had my wisdom teeth pulled and couldnt swallow pills) for my lupus rash to appear. On the other hand, staying on prednisone for over a year and a half significantly increases my chance for long-term side effects.

Clearly we cant stay on the prednisone any longer. Besides, I'd rather take this risk of developing cancer (which I already am at risk for) than lose my hip or develop cataracts. I also do not want to wait until my kidneys are shot for me to start the cellcept. My cardiologist is dead-set that my lupus is causing my heart to get thrown out-of-whack. He even said it himself that the only way to stop the cardiac problems is to treat the underlying condition - lupus.

Ahh well. Hopefully I can last until tomorrow, although I do know that my doctor has appointments open on tuesdays... I am trying to stick it out and hope for the best. Currently, I cannot (for the life of me) go to sleep. Lol the night owl returns!

Hopefully I will catch some zzz's sometime soon.

I wish you all the best of health,

teenlupus101

2

Hopefully the Cell cept will work for you. Just be aware that even with its side effects prednisone may be needed long term in this illness- it is the lesser of 2 evils Lupus can be a double edge sword with a toss up as to which is worse- the medication side effects or the disease

3

hello. ive been on prednisone for 15years. starting at highest doses as getting it IV and now im on 20-25 daily. tapering off feels like the end of the world to your body but you need to realize that the side effects that prednisone gives are far less than those of cell cept. Ive taken Cell Cept twice and moved on to chemotherapy due to my kidneys. Lupus, we never know what it will throw at us we just have to be ready to take it head on. Hope all goes well.

4

Thank you poobie and victoria jimenez!
I am still hopeful that everything will go well. At this point, since the lupus is effecting my heart I really don’t care about the possible side effects from the cellcept. In fact, I have purposefully grown my hair out in anticipation that something like this might happen. So if my hair does start to fall out it won’t be that big of a deal for me. My hips, legs, hands and back are really bad today, so I will probably just sleep. I might break down and take a Vicodin if it gets more worse. I’ve tried naprosyn and tramadol and it has done nothing to touch the pain.
Ill keep you guys updated on what my doctor says. I’d rather start to the cellcept sooner rather than later since I do have school coming up.

Wish me luck!
Teenlupus101