Increased SED rate, low albumin

[boneyboy]

OK so, I've been away for a little while here, been busy as all getout. Also been having some crohn's probs.

Bottom line: SEDrate's up, anemic, slightly malnourished (albumen is low), and I had a partial obstruction incident the other night (last friday night). I was up til 430 AM puking and poopin. Sometimes simultaneously.

So, the doc wants a CAT scan of everything in there (tuesday). Then he wants to put me back on prednisone. I told him no. I'm never going back on that. Try humira. Try remicade (again). I will try chemo before I go back on prednisone, that stuff is the debil. I fought for years to get off it, and I'm not going back on. Nope nope nope. He didn't like that. I don't think he's used to his patients telling him no. Then again, I'm not your standard patient. So anyway. That's my update. Today's a weird day, things are hurtin in crohn's areas so I'm a bit bummed. It's been awhile since I've had any pseudo-major probs (about 6-7 years), so I'm adjusting back into reality mode there.

Anyway, hope all is well with everyone. Keep on keepin on! \m/

 

[Bananasplit22]

Sorry to hear you're anemic =\ The highest my sed rate was was almost 100 and its supposed to be like 20..and I had a hemoglobin of less than 6, so I know it sucks to feel like that...My doctor doesn't even want me on prednisone again becuase I've been on it so many times, it's not good to be on it for too much time, I think it's a good thing you said no.
Have you tried taking iron supplements, or multi vitamins? Or drinking boost or ensure?
You said try remicade (again). You've tried it before? I had it a few times but it didn't work, it was upsetting, I know it's hard =\ Hopefully if you get the scan it will show whats up..good luck, hope you get better

 

[Valentina]

I wont go on pred again either. I was getting an IV steroid with my remicade infussions, but Ive asked to stop that as well. Its not worth it to me.
I hope your DR tries to work with you, and you can find a drug you both agree with! and good luck with the scan on Tuesday.

 

[Sparrow]

Pred is pretty rotten and I fought my doc on it also but it pretty much saved me and I was exactly the same "SEDrate's up, anemic, slightly malnourished (albumen is low)" I'm still on it and its been over a year, but like i said it saved me. Consider what your doctor reccomends even if it's something you probably hate, personally I find pred way better than anything including methtrexate which i've canceled again lol....

 

[DarrylP_Ajax]

So far no complaints on my side for the Pred, i am sorry to hear you have had a bad experience with it, so far it has been fairly good miracle drug for the time being, most days i feel 100% and dont have any side effects really. Until i need to change it up or get off it completely due to avoiding long term use i will definitly be sticking with it for a bit

 

[boneyboy]

Yeah, I was on pred for about 16 years straight, usually megadoses. I'm a small guy too, I will never get close to even being 150. I had horrid mood swings, and honestly (this'll sound kinda nutty maybe) but my personality was totally changing as well. Extremely angry at everything. I'm not goin back to who that person was. I would rather stay sick.

I was on the remicade for about 4 years, and then it stopped working as I built up a tolerance to it. Not completely, but enough so that it was effectively useless.

I'm going to suggest Humira. I don't think it's out on the market yet for CD, but I know a friend that got it for rheumy arth as a back door to getting it for crohn's.

Haha, I just used back door and crohn's in the same sentence. Get it? Haha. I kill me. OK enough of that. Good day people, as you were.

 

[ladyB]

Pred. is the pits!!!!!!! Hope you can have anoyher 6-7 years of free living!