Set back, can't seem to get off Prednisone

I have been feeling so awful. Found out I was anemic some time back but my insurer really dragged its feet okaying the full treatment course. I finally begin getting the injections tomorrow morning; once a week for five weeks.

Last Monday I had to call my husband to come get me and my grooming van and drive home as I nearly fainted after I brought my first groomed dog back inside to its owner. This past Wednesday I was at my GI and we were still waiting on the iron injection pre-authorization and discussing options when he left the office for a bit and I fell asleep! He suggested I pop back up to 40 mg of Pred for a few days and see how it goes. So Thursday morning I took the 40 mg and within a few hours I felt better than I had in weeks. Can it do that so fast? Still bleeding and lots of urgency, but still not much "production" (anemia makes you constipated, with UC you're never completely poopless, but it's uncomfortable for sure). The daily pounding headaches stopped and the fatigue lifted a bit, I can also eat again after losing about 20 lbs in two months.

So far it seems the only thing that has been able to give me any relief is the Prednisone, and obviously I cannot stay on it much longer. GI recommends surgery, but for several reasons I can't do it for quite some time. My daughter, who turns 18 in the spring, is in a residential treatment center 50 miles away. Most of the cost is covered by Medicaid, but we need to still pick up $1,350 a month, obviously not a good time to shut down my business while I recover and then have to build it back up because I will no doubt lose some clients to other groomers in the area. We do have some money behind us, we're not going paycheck-to-paycheck, so that's not the big issue, the major issue stopping me from the surgery now is if I am in the hospital I can't participate on her therapy which is once a week, visitations and the treatment meetings. Even while trying to keep up my work schedule I am back and forth to the place two or three times per week (oh yeah, in an 18 year old car yet!).

I also think that the whole stress of the situation may have a lot to do with the persistence of the flare up so I'd like to get through this issue with my daughter (if it ever will end!) and get that behind me and see what happens before resorting to something as permanent as colon removal.

What is considered the maximum length of time one can be on Prednisone?

Meesh

Sorry to hear about your troubles. As was said by suebear, there is no maximum time that a patient can be on steroids. It is up to the doctor and patient to decide together, by considering the costs versus the benefits. I'm not sure what other medical options you've availed yourself of. Have you yet tried Remicade, or Humira, or Imuran, or 5MP (to name a few treatment options)? I also understand what it's like to have difficulty coming off of prednisone.

If I may ask, am I correct in understanding that your specialist is recommending a colectomy? I assume your entire colon is affected by UC? I'm just curious. Also, what is the story with your daughter, she also has medical issues?

Robert

Post Edited (Robert.K) : 11/30/2007 9:13:08 PM (GMT-7)

Meesh said...

So Thursday morning I took the 40 mg and within a few hours I felt better than I had in weeks. Can it do that so fast?

In my experience, yes. When I was put on 40mg of pred recently to stop a mild to moderate flare, I felt dramatically better the next day. It was like a switch had been flipped.

I noticed you're on both Entocort and Pred. That's two steroids at once, and pretty hard core. I was on Pred for most of a year, then my doctor changed me to Entocort because it supposedly had less bad side effects. Despite that, after three years I had severe osteoporosis (mis-stepped and broke both the bones in my lower leg,) anoxic necrosis in my shoulders, diabetes, moon face, awful skin, etc. etc. etc.

You do still have Remicade to try if you wish before surgery. I hope that if it quits working for me some day there'll be another new drug to work for me.

Hi Meesh - sorry to hear that you're in a rough spot. My first thought, given that you don't want to think about surgery right now, is to just focus on what you need to feel better now. If you are certain that right now your priority is to participate in your daughter's treatment, and put your own on the back burner, then I would personally try not to worry too much about the pred and just focus on feeling well enough to be around for your daughter. The bottom line is that it sounds to me like you're in a tough spot and all decisions will have some negative consequences, so you just have to decide what is most important for you at this time, and it sounds like you have already made that decision. so, perhaps you should just decide that you will not worry about the pred for XX months, and just take those XX moinths to focus on your daughter, but then promise yourself to get off it after that, even if it means surgery. and, in the mean time, do as sue suggested with the calcium and definitely the weight baring activities. make sure your do upper body acivity as well.

that's my two cents. good luck. oh and yes, pred works for me within 24 hours. the difference is night and day.

There is some light at the end of the tunnel. I was in a similar situation. I was very symptomatic, on prednisone, and each time I tried to taper, I would have problems. During this last taper in the fall I was also put on Imuran and Remicade. I was discouraged because after a few infusions I still was not feeling much better as I decreased the prednisone. All of a sudden after my fifth infusion it was as if something kicked in and my symptoms started to improve. I have been at 0mg prednisone for over two weeks, and am feeling better than I have in a very long time. Sometimes it takes a number of infusions for the Remicade to start to kick in. I see that you have only had 3 infusions so there is still the chance that the Remicade will work. For me, 3 infusions was not enough.