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crp and sed levels

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Ulcerative Colitis
What have been your highest crp and sed levels when you were flaring?
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26-50 - 50.0% - 1 votes
50-100 - 0.0% - 0 votes
above 100 - 50.0% - 1 votes
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Posted 11/12/2018 1:35 AM (GMT 0)
I'm curious if your experience of flares and/or pain corresponds to your crp and sed levels? On Remicade and my blood work was taken before my infusion and results for both crp and sed levels were higher than they have ever been, but I was not having severe symptoms so I'm confused.
Posted 11/12/2018 2:45 PM (GMT 0)
There can be a disconnect between symptoms and measurable inflammation levels. Happened to me, I thought I was doing okay, I got a flexible-sigmoidoscopy and my doctor said my insides looked like raw hamburger meat and was very severe and he mentioned take remicade or consider surgery! I was blind-sided, and surprised. Chose remicade, it worked well, and I was able to achieve a remission.

It's kind of like a frog slowly boiled in water. We do not realize how bad it is, because it happens so slowly, and we adapt to it. We become used to moderate/severe symptoms, it becomes routine, and we find ways to live despite flaring badly.
Posted 11/12/2018 2:52 PM (GMT 0)
thanks for your reply John. BTW enjoying your posts, they are very helpful, and your sense of humor as well with your "you might have UC" comments! I'm also thankful for Remicade, finally found something that is helping. Now I just have to conquer my steroid symptoms.....
Posted 11/12/2018 3:02 PM (GMT 0)
Humor is an asset in this awful illness. If I can help you smile/smirk then mission accomplished smile

I read the posts on your steroid troubles and I am not really sure what to offer. The only thing that comes to mind is to get off the steroids as quick as you can.

Generally steroids, double-dose IV remicade, or IV Methotrexate/Cyclosporine/Tacrolimus would all have the same rescue affect. If the steroids are unbearable then perhaps one of the others would work better! They're strong immuno suppressants and work well for some of us, when steroids fails us.

1.) You can always ask about using double-doses of remicade (10mgs per kilogram of body weight instead of 5mgs) to get a quicker response. Often considered to be a rescue dosage.

2.) Consider adding a strong immunomodulator to take the place of the steroid and allow a faster taper. You can ask about IV Methotrexate. Alternatively ask about IV Cyclosporine/Tacrolimus. Any of those would be considered rescue meds.
Posted 11/12/2018 3:13 PM (GMT 0)
John, have a great GI and I've been on a double dose (10mg) of Remicade from the beginning. He also shortened the time before my 2nd infusion to 10 days instead of 2 weeks, and my next one will be in 6 weeks instead of 8. He had to treat me very aggressively because my condition went to severe very quickly and I hadn't been responding to mesalamine or humira. I have been on steroids for so long for my other condition and struggling to get off so was resistant to upping the pred, but there was no choice at the time, he upped it to 30 with no results, so upped it to 60 with the idea of tapering quickly if/when the Remicade kicked in. Basically the goal is to find a maintenance drug that works and get off the steroids. We are working hard to get me back off the pred now that the Remicade is working. Now down to 30mg and dropping to 25 tomorrow. But the cumulative of the pred has taken its toll and I shake like a leaf and am so weak. Someone on this forum suggested taking DHEA supplements, just ran it by my GI to see what he says but he's very old school and pretty anti-supplements. Not sure I want to go against his advice if he says no......
Posted 11/12/2018 3:38 PM (GMT 0)
There's some firm believers in supplements, I am not one of them. I find the data very lacking, and it to be more anecdotal rather than evidence-backed. Yes, there are some small, open-label scientific studies but nothing double-blind, large-scale, peer-reviews and verified through peer studies. The difference being, open-labeled is "promising but uncertain/not recommended without more research" Whereas, double-blind et al. are solid and recommended for broad treatment of an illness.

If you're struggling then supplements could help and might be worth a shot, but there's most certainly no guarantee of any affect at all (could just be a waste of money and time).
Posted 11/12/2018 4:37 PM (GMT 0)
I think your opinion John is very consistent with my doctor's. I'm on the fence. Will wait to hear back from him.
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