Needing advice about appointment on Thursday

So as I said in an earlier thread, despite being on Humira my symptoms can come back full force. Lots of pain and D, joint pain. So I called my GI this morning. He was at the hospital today, so the nurse asked one of the other doctors in the office. He wanted me to be seen ASAP, and of course my GI doc is booked until November. So I have an appointment on Thursday with one of their physician assistants. The nurse said they may want me back on prednisone.

Now besides handing me steroids, what else can this person do for me? I should start by saying I DO NOT want to go back on steroids. I just got off of them after being on them for 4 months, I tapered a month ago. I really don't think they did much for me this past time, I didn't start feeling better at all until I started the Humira. Unfortunately it's just stopped working I guess. I've been on steroids so much, I don't want to be on them again. Not to mention over the past couple of years I've packed on 50 pounds thanks to them, and I really need to LOSE this weight. Not add another 20 or more pounds.

So I just kind of feel like this appointment is useless. I need to see or at least get my GI doctors opinion on what to do. I need someone to make a hard decision. Up my Humira? Add a medication to it? Switch to Remicade or something else? I doubt this PA can do that, and I'm not sure I'd want them to right? I called and asked to see if there was anyway I could see my GI earlier, and they said no. They couldn't even change anything because this other doctor put in that I needed to urgently see a PA. So frustrating.

It sounds like you need to keep the appt. In my experience with PAs, they work in tandem with the doctor and usually know how your doctor would handle a particular situation. If not, they will consult with him/her before proceeding and they should be able to do as much for you as your GI would do if he saw you himself. They're usually pretty thorough too, at least the ones I've dealt with have been. Hopefully you'll get a good one.

I understand your aversion to pred. I was steroid dependent for a few years and worked really hard to get off but at a cost. The last time I went on pred, I gained weight that I still haven't gotten off (5 years ago, ugh). I know if it came down to it, I'd use it again and hope I could get off it faster than before.

I know it's a hard decision. Take care.

First off, you're absolutely right to not want to go back on Pred. I put on a lot of weight through that med as well, so I sympathise with you there. Vanity is not the main reason for staying off Pred, however. The main reason is that it is ultimately a drug without any redeeming features. It is too dangerous to stay on as a maintenance drug; the body becomes more dependent/resistant to Pred the more times you take it (with a risk of eventually becoming entirely steroid-resistant); the adrenal glands can be impaired for up to a year after coming off Pred; and, last but not least, it does not heal the intestines or stop the underlying disease activity.

I wasted two years because unfortunately I responded to steroids - and yeah, that "unfortunately" was meant. But towards the end of that time, I was noticeably more resistant to Pred than I was at the beginning. It took longer to kick in, I was tired even on 40mg, and symptoms came haring back much sooner. I wouldn't be remotely surprised if you have built up some resistance to Pred by now.

I think you should look at starting azathioprine or 6MP and either increase Humira dose or switch to Remicade. Perhaps increasing the dose might kickstart Humira again, but I wouldn't waste a lot more time with it - I'd switch over to Remicade ASAP, if a double dose of Humira shows no sign of working.

I hope the PA can help... If they can't prescribe biologics, it's a waste of time seeing them, imo. But hopefully they can.

Good luck... I'm really sorry the Humira didn't work longer than this :-/

Hi Jen, I'm a steroid-dependent person, too and can relate. Next November, I will have been taking Entocort for 2 years now. I have to take a combo of it, Pentasa 4 g and Imuran. The steroid can't work on its own. IMO, if you are that sick try a short course of pred and try to taper it quickly. Meanwhile, hope they add 6 mp or something else so that it kicks in quickly. So, I think you should keep this appointment and hopefully it turns out to be fruitful.
Hope you feel better soon :)

My son took Humira and it did nothing. Then GI switched him to Methotrexate which he had very mild success. When he was on both together he did great.

This combo is only second to Remicade. His GI puts him on prednisone just long enough to give the other meds a chance to work then he weans him off to see if the symptoms come back. If you are at maximum dose Humira may not be working for you. Ask about the combination. Good luck

I will do my best in convincing them. Although I admit I'm a bit of a chicken. It took me a lot to take the Humira, so I'm sick to my stomach when I start thinking about Remicade and 6mp and such. I'll get my bravery up, but for now I'm scared. :( Did some crying today, kind of having a self pity party.

Thought I'd update. Sadly as I feared it was a very unproductive visit with the PA. After keeping me waiting 45 minutes past my appointment in the waiting room, I was ready to leave already. But after finally getting to see this guy, I explained everything. He cut me off and ignored me when I started to talk about the joint pain (guess he doesn't know much about that?). Basically just wants to see the C diff results, and all he could offer was a very short taper of steroids.

He said I need to see my regular GI and that I probably need a medication change. I should have called him Captain Obvious from that point on. So I have an appointment to see my GI next month. I'll do that short taper, but I know it won't do anything. A long course barely did anything, over several months. So some 10 day taper is quite laughable. Oh well, hopefully I'll be able to manage the next month okay.

That's a very good idea gumby, I'll have to put a call in on Monday and see if they can put me on a list. It's frustrating. Sadly the diarrhea I'm pretty used to, but this hobbling around on my painful ankles is making just the basic day to day functions difficult. Hopefully I can get in sooner.