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Bad news - would you keep reducing Prednisone or wait a bit?

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Ulcerative Colitis
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Posted 9/4/2013 2:21 PM (GMT 0)
So I just found out my mom has advanced cancer, started in her appendix and has spread to her back. They can't remove it in her back and aren't sure if they will do radiation as they don't know if it will help.  They are sending her to a cancer center (in my hometown where the hospital sucks). We may try to see if she will go to Mayo but I don't know what she will do. One of her friends is dying of a very painful cancer so I know she will be thinking about that. My dad passed away a little less than 3 years ago so this is even harder on my family.

I don't want to think of myself right now. Well I'm thinking so many things now actually, I'm even shaking. :(  But I am reducing my prednisone, just reduced to 3 mg yesterday and I reduce every few weeks by 1mg. Should I keep reducing it? Should I keep it the same for awhile? I want to get off of it but I know this is only the start of a very stressful time. I'm back in remission now but don't want to go back into a flare. I've been trying to get off Prednisone for a year.

Just thought I'd ask for advice. As I said I hate to even worry about my own body right now or my life. I figured you guys would understand though.

Posted 9/4/2013 2:49 PM (GMT 0)
sorry to hear about your mom - but I would stay on track - some things you can put off, like buying a new car or planning a trip, but this is your life and it needs to be a priority - hope things work out -
Posted 9/4/2013 2:59 PM (GMT 0)
I am so sorry to hear about your mum, but if stress is a factor in your disease then maybe you should level out for a while just to maintain consistency so if you get stressed your body is only dealing with that one thing at a time. Only you will know your body and if stress and how emotional upheaval will affect your well being. When my dad passed away I got worse my flare up was huge the emotional turmoil as he got worse, it was very hard as was the first anniversary. This is a great sight to draw strength from
Posted 9/4/2013 5:00 PM (GMT 0)
I agree. Stress can be a very major factor in flares so I would not be tapering right now. In fact, it might not hurt just to up it to 5mgs until you are fairly sure stress levels have decreased and then resume a 1mg taper.
Posted 9/4/2013 5:06 PM (GMT 0)
Thanks for the advice so far everybody. I dont' think I'll go back up as its really taking alot of time for my body to adjust to each taper. But I do think I will stay at 3mg and go back up to 4mg if I start to feel sick. I did just reduce to 3mg yesterday so my body isn't feeling the effects of that taper yet. I'm trying not to think about it all for now as there is nothing I can do and I don't have all the info right now. Guess I'll just take it one day at a time which is pretty much my philosophy with my UC in general.
Posted 9/4/2013 5:25 PM (GMT 0)
Did you doc give you a pred taper schedule? You should follow that and then u wont have to think about it ;-( all the best
Posted 9/4/2013 5:41 PM (GMT 0)
He pretty much lets me taper as I see fit. I taper 1 mg every two weeks unless things don't feel back to 'normal' then I wait till they are before I taper. Whatever I do, I don't want to go back into a flare-up. I won't be able to deal with that and help my mom at the same time. When my dad passed away I wasn't on Prednisone, only 1 enema a day and my colazal pills. I just went up to 2 enemas a day back then to keep from flaring during that period and it seemed to work. Well now I"m on 2 enemas a day to help me get off Prednisone without flaring so can't use that solution. Also my dad passed away very unexpectedly so although it was very stressful and painful it wasn't something I dealt with for as long of a time.
Posted 9/4/2013 5:43 PM (GMT 0)
So sorry about your mom. I hope everyone hangs in there and there will be a reasonable solution.

Meanwhile, if I were you, I would not reduce Prednisone and add Ashwagandha in regimen (It may actually be useful to your mom too).
www.amazon.com/Himalaya-Ashwagandha-Anti-Stress-Withanolides-Capsules/dp/B0002BBATC/
www.amazon.com/Himalaya-Healthcare-StressCare-Anti-Stress-Vegetarian/dp/B000H87TMC

I trust this brand. Have used a lot of their products and have been using with DS (age 5).

Good Luck.

(Along with what our 'traditional' therapy there is, seriously consider alternative medicine in addition.)
Posted 9/4/2013 6:02 PM (GMT 0)
Oh how sad to hear about your mom. This is going to be a tough go for you, and I agree with everyone that your health is really a priority while you're dealing with your mom.

You also need to tell your doctor about your mom's cancer..especially that it's started in her appendix...he needs to take biopsies with that in mind.

I'd suggest you stay at the prednisone dosage you're at and not taper during this time.

I want to suggest that you get off the evening primrose oil...it can act like an estrogen in the body. It might be that your UC is estrogen sensitive...just a thought.

Please keep us updated how your mom is doing. Hugs to her!
A huge hug to you...

I hope you have support from other family and friends to help you though this.

qxx
Posted 9/4/2013 6:12 PM (GMT 0)
Thanks quincy. I will definitely mention it to my doctor next time I see him. I know the next few weeks will be hard on my family trying to figure out a plan for my mom.

I could stop the primrose oil. I mostly take the tablets to help with my hair and nails as my hair has been falling out and my nails do get ridges in them (although they have been fine lately). My birth control has estrogen in it too though I believe and for some reason those seem to help my UC - mostly cause they keep my hormones regulated and my UC doesn't respond well when I have my period.

Luckily I do have a big family to help with support, although they all have their own families. When my dad passed away I had my boyfriend to lean on, but since that endeded back in November I'm pretty much alone now. I have been realizing that the past 3 years really have not been too good with my dad passing away, me getting that endocervical cancer, me getting a flare-up, my 6 1/2 relationship with my boyfriend ending and now with my mom. I'm surprised I haven't been in a flare up for the past 3 years.
Posted 9/4/2013 6:18 PM (GMT 0)
Wow, you've been through way too much in your lifetime. It's a most heartbreaking time in our lives when parents are sick, worse when we're going through our own health crisis as well.

I think you should have genetic marker testing done. What did your dad die from?

You've definitely held your own regarding UC for quite a while. Now's the time to demand more answers and get on a good treatment plan to help your UC. It might take a bit of time considering the emotional turmoil and you trying to regain your footing from the past sinus infection (I remember now)...

Hang tough....vent anytime on here. We've all had some experience that will allow us to relate to you in one form or another.

q
Posted 9/4/2013 6:28 PM (GMT 0)
My dad died from heart disease, which luckily I live a pretty healthy lifestyle so my chances of that are much slimmer. I workout alot and keep my weight down (although he wasn't overweight). I also try to eat healthy and he did eat pretty unhealthy his whole life. But he did grow up Polish and they tend to cook with alot of lard!
Weird thing is that endocervical thing I had, which is really rare, isn't related to anything anyone in my family had. Same with my mom, cancer of the appendix apparently only accounts for 1% of colorectal-area cancers, so quite rare. Nobody else in our family has had that sort of thing. Her mom had bone cancer and I can't remember what her dad died from, I think heart disease.

I think my UC plan for now is pretty good - keeping on the Prednisone and tapering only when I feel completely fine from the previous taper. Keeping at the 2 enemas/day until the Pred is out of my body. Then I'll go back to my Colazal/1enema per day regimine that kept me in remission for 10 years. It was me going off all my meds that made me flare up after so long in remission - advice of that new (resident) GI I had went to, the one who told me I never had UC (he was wrong of course). If I can just get back to how I was before all that, I think I can live my life fine with that routine.

And yes, I've been through too much in even the past 3 years! I'm ready for my life to settle down. I'd been trying dating again the past few months but have already given up on that for now. I am ready, though, for things to just settle down in life for once! I'm sure more than enough people on here feel like that though.
Posted 9/4/2013 6:39 PM (GMT 0)
I'm so sorry to hear about your mom. Since you're on such a low dose and you've already tapered to 3 mg, I'd hold there and if all is still well UC-wise, go ahead and drop to 2 mg when you were planning to.
Posted 9/4/2013 9:18 PM (GMT 0)
Sorry about your mom :( I think you should be okay to keep reducing as you had planned. Esp. since at such a low dose. Or if you are worried add on a couple of days to 3mg and then go to 2. Just thought.
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