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Joint pain... still.

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Posted 11/11/2012 5:27 AM (GMT 0)
Got prescribed Entocort/Budesonide and been on it for 5 days. My GI seems to not like anything past this med, like Sulfalazine or biologics, not sure what he'd do if this doesn't work, he mentioned pred but I really really want to avoid that if possible. Also, I am not having many GI symptoms besides random abdominal cramping.

Still haven't felt a change, in fact I feel it getting worse as I haven't been as active the past few days and its getting way colder here.

How long should it take to feel anything from the Entocort if anything at all?

I am super thankful these days for Vicodin. The gel didn't help, neither did Tramadol and/or Tylenol.

Anyway, just feeling a tad on the down side today as I am sick of having to be at the mercy of pain meds to function and I got 2 kids to take care of, plus the mental aspect of not feeling like doing anything.
Posted 11/11/2012 11:37 AM (GMT 0)
Have been on the Entocort express again for last 2 weeks, come to think of it no joint pain, Tramadol is hit or miss lately like nothing. I am around machines and avoid anything but Tylenol. Give it a little more time (days). trying Cimzia now, tried Remicade. You didn't mention how much Entocort you were taking,
I'm down to 1 a day tapering down.
Posted 11/11/2012 4:31 PM (GMT 0)
Entocort is not as fast-acting as pred. I would give it a few more days. And I would ask your GI to defend his position on sulfazine.

I ended up seeing a rheumatologist, who ultimately had to call my GI on the phone and kind of bully him into taking my joint pain seriously. It also happened that I had a bright red swelling on my wrist one time at a GI check-up. Those two things combined got me some results.
Posted 11/11/2012 7:14 PM (GMT 0)
Regarding the sulfa, he said it has a lot of negative side effects and from our recent appt's I can tell he really is concerned about keeping the side effects low, like he has a vendetta against biologics or something, which I like that hes trying to make it work without just jumping to all these other meds. He DID say that sulfa could be an option, we'd just have to check my bloodwork first and often, I forget exactly what side effects he specifically mentioned, but reading up on it, I get it.

I am on 9mg for 2 months, on my 6th day now. We have an appt in 2 weeks, so hopefully I'll have some change before then. I also need to see what to do regarding missing doses since I ordered them from Canada (only 50 3mg capsules since my wife's insurance from work was kicking in soon, but its still way more expensive) and I forgot to reorder in time to get the next batch, so if the timing is correct I'll be roughly 4 days to a week without it.
Posted 11/11/2012 10:40 PM (GMT 0)
When I have taken Entocort it has taken about a month to really kick in fully. I am also avoiding biologics like the plague because of the cancer risks and the fact that they don't work forever anyway.

Have you asked your doctor about any clinical trials available in your area? I am in one now and it seems to be working out really well.
Posted 11/11/2012 10:42 PM (GMT 0)
Sulfazine can give you headaches - I think that's the most common negative side effect, and I do get more headaches now than before. I also cannot drink red wine anymore without getting a headache (too many sulfites?). The other major issue is it can reduce platelets. Mine are at the low edge of normal.

But you know all of this is ok considering that before I took sulfazine I couldn't use my hands about half of the days of the month.
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