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After 8 Glorious years ... A FLARE 😡🤦🏻‍♀️

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Ulcerative Colitis
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JustaMyth
New Member
Joined : Feb 2020
Posts : 7
Posted 2/25/2020 2:38 PM (GMT -7)
Back to square one after having a solid remission the last 8 years. Ugh.
I was able to stop taking maintenance meds 3 years ago-
I am gluten free (intolerance) & dairy free (allergic) which was discovered because of my UC journey. I am extremely diligent about my diet. I also believe in supplements- I take turmeric, Omega-3, D, B, and probiotics daily & have for atleast 15years.
My problem started when I became chronically constipated over the summer this year, I suspect that is due to the change of my IUD last March. Long story short- GI doc (same I’ve had since day 1!) decided to take a look and in December, I had a scope.
NO ACTIVE DISEASE, A BEAUTIFUL COLON indeed!!! However, he asked me to start linzess. I was skeptical since I’ve not taken any meds for a very long time. Just so u know, I appreciate medicine, My 11 year old son is now on meds for his newly diagnosed UC (like mother, like son - sadly) BUT, I am super skeptical about what I will put in MY body BECAUSE of my UC and my very solid remission. Long story short, I’m not sure if that linzess triggered the HORRIBLE flare that’s just blown up the past 2 weeks or the scope was the underlying cause or a combo of the 2. Either way, I feel like dirt & it’s been awhile since I’ve felt so bad & spent so much time in the bathroom-
I asked for a prednisone script and that starts tomorrow for the next 2 weeks. I’ve also added Boswellia to my supplement intake to aid the turmeric.
I’ve not been in this hell for quite sometime so I’d like to ask what suggestions you all might have ? And I appreciate them!!!
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C_G_K
Veteran Member
Joined : Dec 2006
Posts : 1414
Posted 2/25/2020 5:15 PM (GMT -7)
Sorry to hear about your flare, and your son's diagnosis. Not much you can do except wait for the prednisone to kick in. Are they only giving you two weeks worth of pred? It takes me 3 weeks just to get rid of the diarrhea, and I taper from there. You should also be considering maintenance meds like mesalamine oral/rectal and azathioprine.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 2/25/2020 5:21 PM (GMT -7)
Have you had stool tests done to make sure it's not c diff or something?

I'd recommend rectal meds. They can make a huge difference.

2 weeks of prednisone is a very fast course. What dosage are you starting at? Pred never worked for me unless I did at least a week of 40 mg and then tapered by 5 mg/week -- usually takes 6-8 weeks to taper completely.

What were your previous maintenance meds? Could you go back on them?
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JustaMyth
New Member
Joined : Feb 2020
Posts : 7
Posted 2/29/2020 5:31 AM (GMT -7)
Thank you for the replies!!

After seeing doctor yesterday- we’ve upped the prednisone to 40mgs for 10 days, then 30, then 20 and so on.
This is probably the worst flare up I’ve ever experienced- my pressure was up yesterday too and I normally run low so that’s now a concern I need to be mindful of too.
I’m highly allergic to mold and it’s been a very rainy, warm winter here in the northeast ... nothings really dried out bc of the warm temps so I suspect this is the reason for my lovely flare.
While I absolutely hate prednisone- I hate this flare even more so I’m going to stop it in it’s tracks and move on!!!
Then start back on colazal. It was great to be med free for a few years, the long term effects of balsalazide are not fun but def outweigh this flare up-
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Eph
Regular Member
Joined : Nov 2010
Posts : 359
Posted 2/29/2020 7:00 AM (GMT -7)
Wow, I'm in a similar boat. 2 yrs of remission until my most recent scope that said "all good".
40mg Pred is working for me after a week. Hoping to start tapering in another week.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 2/29/2020 8:16 AM (GMT -7)
While you are on the higher doses of pred your BP will be elevated, As long as it doesn't get super high nothing to be alarmed about and it will return to normal once you are off.

Right now I am having BP issues unrelated to prednisone. The med I had been taking for 40 years stopped working and BP went sky high (190/124!). Been working with my PCP to adjust meds, but he now has me taking 4 different meds. He offered to refer me to a cardiologist for another opinion and I agreed. Waiting for an appt now. I'd like to make sure there isn't something more serious going on and hopefully get the meds adjusted so I don't have to take so many.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 2/29/2020 8:32 AM (GMT -7)
Also, dropping by 10 mg at a time can sometimes be too fast. If you see any symptoms returning you may need to check with your doc to slow it down to 5 mg a week. Some even have to go slower once they hit 20 mg. Listen to your body and don't push it to heal faster than it can.

Don't wait to start back on Colazol. Pred is just a rescue to give your maintenance med time to work so that by the time you taper off pred the colazol will already be working to keep you in remission.

What long term side effects are you worried about? Mesalamine is the mildest of the meds we can take for UC and there are people hear at HW that have been on it for over 20 years.

Are you using any rectal meds? I was resistant to starting them because they sounded yukky but once I tried them I discovered how easy they are to use. I had to ask my doc for the script (he never suggested rectal meds) based on so many recommendations from this forum. Many docs don't prescribe them unless requested .. maybe because of the yuk factor.
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JustaMyth
New Member
Joined : Feb 2020
Posts : 7
Posted 2/29/2020 4:51 PM (GMT -7)
I think every person experiences different side effects and or long term effects from different meds as every body is different- for me balsalazide was harsh on my bones after a few years. I know this bc once I came off of it (since I had been in remission for 5 years at that point) after about 3 months my body totally felt different. As for the rectal meds... no problem, I love canasa !! However for whatever reason, allergic to Cort enemas so can’t do those.

Thank you guys so much for the advice- hopefully the prednisone will do it’s thing & im starting the balsalazide again on Monday so fingers crossed 🤞!!
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HardEvidence
Regular Member
Joined : Apr 2018
Posts : 69
Posted 2/29/2020 8:10 PM (GMT -7)
Eight year remission is great JustaMyth...congrats! Hope you get this flare under control and find remission again quickly! Good luck!!
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 2/29/2020 8:28 PM (GMT -7)
You could try a different mesalamine if you get the side effects again. Balsazide is formulated differently than others. Don't know all the scientific details. Hopefully iPoop will see this and can explain.
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