HealingWell
Search Close Search
☰

NSSG

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/16/2015 11:43 PM (GMT 0)
So tell me exactly what's going on with you? What medicines have you been on before, during and after the symptoms started?

I know you've made some posts recently, so I apologize if this is redundant. If so, put a link here and I'll jump on that thread.

Post Edited (Thoreau) : 1/16/2015 4:53:02 PM (GMT-7)

Posted 1/17/2015 12:25 AM (GMT 0)
Nothing new really. I am just trying to taper off pred, only one t two weeks left... Uc isn't bad right now luckily but I am not on meds for treatment because I have tried so many things and none work. I think I am down to entyvio at this point. Reassessed and starting back on some meds next week, hopefully things will come together.
Posted 1/17/2015 2:07 AM (GMT 0)
It sounded like a bit of fatigue and shoulder/neck pain. I wondered if those were present prior to tapering pred? I'm sure you know, but the tapering could at least cause the fatigue.

Honestly though living with UC for years and years without being in a real remission, I would get fatigued and need to rest more anyways.

Maybe the shoulder/neck thing is related to pred, or UC, or even just tension...

It's so hard to know when you have UC if something else is related or not. But, I feel for you.

---------------

As a side note, have you ever tried L-glutamine powder... or turmeric root powder? I spent a ton of time trying multitudes of supplements, and believe those two really do help. I wouldn't say they'll keep you in remission alone or anything, but I notice a difference... and they're cheap.
Posted 1/17/2015 4:32 AM (GMT 0)
NSSG, hoping the Pred taper is tolerable and you don't feel worse. I just wrote to Thoreau on the other thread about my extremely slow tapering this last time. I was impatient to be done with it but stuck with what the dr prescribed. (I'm not always that compliant!)
Wishing you well.
Posted 1/17/2015 6:13 PM (GMT 0)
I've had the fatigue for as long as I can remember. The doctors always want to attribute it to uc but I know I've suffered with fatigue my entire life so I don't think it's related... The neck and shoulder pain has gotten really bad lately. I think I had it on and off before pred. Might be from working on the computer... Not too sure but I would like to get t the bottom of it at some point. Right now, I just want my uc to remain calm lol. Pred sucks but I feel ok right now. Not to nuts. Things were bad when I was on a higher dose. I was unable to tolerate anyone.
Posted 1/17/2015 6:32 PM (GMT 0)
well, hopefully you can get started on entyvio- especially before you are fully off pred. my trouble zone is always below 2.5 mg. i feel good until then and once i'm done, all bets are off if my maintenance meds aren't working.

ditto on the fatigue. it is horrible. i think mine is UC related since all my hormones are out of whack. just rest as much as you can, especially since your body has to start making cortisol again.
Posted 1/17/2015 6:36 PM (GMT 0)
I hear ya on the prednisone disposition... I'm interested to see how I fare on 40 mg right now. Started yesterday to see how it helps my pains.

My wife has bad mystery fatigue. She's done all sorts of tests and nobody can pinpoint it. As I learn about gluten sensitivity for myself I've seen things such as Dr. Oz stating how there seems to be a range of sensitivity, and that even if a person doesn't have Celiac's disease they may really benefit from trying it. So, that's one option. Another is hormones. I saw a PBS show by a lady on hormones, more-so speaking towards women... she has a book "Is it me or my hormones?". That would be worth peeking at for yourself, as she spoke about things like fatigue.
Posted 1/17/2015 7:02 PM (GMT 0)
Something is definitely off with my system too but it's a mystery. I have had more tests than anyone and nothing shows anything odd. I don't get it. My old gi would say, "it's probably just your uc", maybe she was right. Maybe it's all uc or just having an autoimmune condition. Maybe it's anxiety or something that doesn't show up in labs. I am having calprotectin checked. It will be interesting to see the results. Maybe it is hormone related. Last time I had hormones checked, I had low t. I know that sounds funny for a woman to say but it was like zero and that's not normal. I should get a panel run.
Posted 1/18/2015 2:27 AM (GMT 0)
My wife had extremely low t... like the lowest level above none. The doctor said it was the lowest they had seen. So... maybe you two have the same mystery thing going on.
Posted 1/18/2015 3:32 AM (GMT 0)
Mine said <6 as the result and normal was 10 - 80 or soemthing. Was her's worse? I do believe this can cause fatigue. I wonder what we can do to improve. At least she doesn't have the UC too. Whatever the mystery condition is, it's not fun either. It makes you very tired and achy.
Posted 1/18/2015 4:17 AM (GMT 0)
Hers was 1. I'm not sure if it's better to laugh or cry at that number... lol.

She did a sleep study overnight and during the following day. She was diagnosed with "Idiopathic Hypersomnia" which sounds good since there is a name. BUT, that name just means that she is sleepy and they don't know why... :-/

Other things to consider: It could be hormonol birth control is contributing if you're on it. She is going to stop hers in the next couple months and see if it helps with that and other issues. It's a gamble though since she's on it to help with other things. This is a link I showed her, although it's more related to issues of libido and pain during sex: http://nicolejardim.com/the-pill-your-sex-drive-how-to-start-reclaiming-your-va-va-voom/

We eventually will be getting her to Mayo this year if no other answers come up. I will surely tell you if we're able to figure something out.
Posted 1/18/2015 3:13 PM (GMT 0)
Btw... stopping hormonal birth control does increase T it looks like.
Posted 1/18/2015 3:46 PM (GMT 0)
I take a mini pill with no estrogen but it does have progestin. It's extremely low dose. I've been thinking about an iud lately but some of them are hormonal too. I don't want to deal with a monthly period. I haven't had one in so long, it just sounds like a big inconvenience at this point... I guess if I felt better and had some energy, having a monthly visitor wouldn't be the end if the world but it's certainly not desirable.

Oh my sex drive is not good either lol. It's the worst. I miss it

I am going to read this article and see if i can be helped.
Posted 1/18/2015 11:11 PM (GMT 0)
I apologize if anything I mentioned or asked in this thread was too personal. I've really seen my wife suffer and seen her days altered drastically by her fatigue, so I'm sure I'm passionate about trying to figure it out.

If you have any other questions just ask one way or another. I'm not sure how emails are set up on here for private messages, but if you have any I could figure it out.
Posted 1/18/2015 11:42 PM (GMT 0)
It's totally not. I appreciate that you care. I hope that we can find some answers.
✚ New Topic ✚ Reply