Getting some questions answered (finally!)

Hi all,

Just wanted to share a quick update. I was checking in with my rheumy today and she told me my Vitamin D was quite low (20ng/ml). I've been taking 4000iu/day for the last few weeks (up from 2000iu/day), and I'll probably up it now to 6000iu/day. But this is actually good news, as it may be explaining why my joints hurt so much even if all my bloodwork is saying there's no inflammation going on.

In other news, I'm a week into halving my Topamax and two weeks into halving my Lyrica and feel like I can think again! I don't think I realized how bad the brain fog was until I started to emerge from it. I'm definitely getting more headaches and chest pain with the decrease, but it's been manageable so far.

I'm also officially 8 weeks out since my last Remicade infusion and am still on no Crohn's meds. I am dealing with a fair amount of nausea, abdominal pain and general discomfort though, so I'm not in the clear. I'm thinking my supplement (with probiotics) and/or my diet changes is helping my constipation some, as I'm no longer "severely" constipated, only "somewhat to very" constipated (my terms). :)

I wish I knew! I'm doing a gastric emptying study soon, but other than that my GI just wants to play it by ear for awhile and have me call her whenever anything changes. Remicade really did not help my opinion of biologics (I say as I cough from this darn chest cold that won't go away), but I guess that's likely the next thing she'll propose (I think deep down she's hoping I'll change my mind and continue the Remicade, but she's not one to push an issue I'm against).

I'm not sure what to do next honestly. Meds seem to cause me as many problems as they help if not more. This current flare has been such a long journey that I'm just feeling worn down. Assuming the inflammation is still somewhat constant from where it was a year ago, then it's in my rectum, TI and stomach.

No, it's not soy-free, but I have no problems with consuming soy in my diet. I eat tofu, edamame, and soy sauce (I do not subscribe to the SCD attitudes toward soy).

10,000? Wow. Well, that's good to know, as there's so many different voices out there about how much you should take. I imagine we can probably take a lot more of many supplements since they aren't getting absorbed.

I'm just glad we're finally getting some sunny weather so I can get some of my Vitamin D that way. :)