I'm absolutely tired of this

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NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10084
   Posted 8/27/2017 6:27 AM (GMT -7)   
Thanks huckleberry!

I feel a bit better compared to when I made the thread, fortunately, but still feeling pretty down and negative/hopeless about the future. It is hard to see what will improve - certainly not my health! Struggling with uveitis and sinus pain currently. Have had uveitis several times this year and it is beginning to drive me round the bend. Steroid drops have helped, but my right pupil is smaller than the left pupil, so something is still wrong.

Aaand I just found this during my googles:

Steroids are controversial. Opinions differ as to their long-term benefit, and whether they are safe in non-expert hands. They probably hasten resolution, and justify the risks associated with their use, but only provided that you don't use them if there is any sign of infection, especially a corneal ulcer. Remember also that: (1) Steroids will make a red eye white, regardless of the cause, without necessarily curing it. (2) They will suppress the normal inflammatory response, without killing the causative agent. (3) They may raise his intraocular pressure, and may cause a secondary glaucoma that could blind him (unusual). (4) If you give steroids long term, they may cause a cataract, but they will not do this during the few weeks that are necessary to treat acute iritis.

Urgh.

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 330
   Posted 8/28/2017 2:58 PM (GMT -7)   
((hugs))

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 715
   Posted 8/29/2017 9:07 PM (GMT -7)   
Double hugs NCOT.....

I too get uveitis about every 6 weeks. Thank God for Remicade. It seems to help more than my drops.

So frustrating.

Hang in there!!
Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10084
   Posted 8/30/2017 5:54 AM (GMT -7)   
Thanks huckleberry and Clo!

The steroid drops still haven't fully knocked it on the head. Couldn't sleep last night and my right eye started feeling a bit weird again, so I looked in the mirror - sure enough, it was slightly red and the pupil was smaller than the left one.

It's ironic that you talk about Remicade helping, Clo. Methotrexate and anti-TNFs are treatments for refractory uveitis. I suppose Entyvio wouldn't help because it's gut-specific. And indeed, when I was on Remicade, Humira, pred, and so on, I don't remember any issues with my eyes. I do remember in 2007, 2008, or thereabouts having a right eye that was slightly dodgy however. In the corner there was a red bit and it often felt like there was something stuck there, like an eyelash or piece of grit. Not sure if that was uveitis or not, but, looking back, it seems possible. And then my Crohn's got worse and I started going on stuff like pred and Remicade, which probably cleared it up.

I wonder if Stelara would help? :-/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 715
   Posted 8/31/2017 9:00 AM (GMT -7)   
Wow NCOT,

I didn't know that about methotrexate. My first bout of uveitis was just prior to my starting methotrexate. I still will have periodic problems....usually right before Remicade. It used to happen more frequently but the combination of the two seem to keep it in check.

I still have vision issues. Things are just off from how they were before. I don't know if it is depth perception or what.

Maybe someone on here who has taken Stelera andhas had uveitis will be able to tell us.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10084
   Posted 8/31/2017 1:14 PM (GMT -7)   
Clo - Yeah, methotrexate is apparently one of the possible treatments for uveitis. I have been on it in the past for Crohn's and wasn't mad keen on it. As well as not doing a thing for my Crohn's, it was rather a rough med which may have contributed to my needing a blood transfusion for anaemia a few months later.

I feel like something is 'off' with my vision too, although I couldn't describe what it was. During severe attacks, my vision goes misty in the affected eye but steroids usually make that go away. Even without the mistiness, my eyesight seems crap. I always get my eyesight tested before seeing the opthalmologist; one of them asked me if I had a lazy eye and another one asked when I last had my eyes tested (the answer was a year ago). That said, I'm not blind and I can read, drive, and stuff. But at the moment, I feel like only the steroid eye drops are keeping it in check and they come with long-term risks to eyesight themselves.

So yeah, not happy with how persistent this uveitis seems to be :-(
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

irishgal1
Regular Member


Date Joined Aug 2015
Total Posts : 62
   Posted 12/5/2017 8:07 PM (GMT -7)   
Kate548 - I saw your post today on the other thread that was just locked, and you mentioned that Qu Bio worked really well for you, but you had to switch to Entyvio after the study. I thought I read somewhere that they had a compassionate use program or something. Can you continue to get Qu on that a
basis? So sorry you are having a rough time of it. I Lso had bad joint pain. You may want to consider drug induced lupus. PharmaNAC helped my joints some. I'm hesitant to suggest AMAT since you've had CDiff, and looks like you may have already tried it. Also, I know of a great GI who sees patients from all over. Dr. Shafran in Orlando. He uses combos of all sorts of stuff. May be worth looking into if your current docs aren't helping. Not sure where you are though. Hope you find something that works soon!❤️💛💚💜💙

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10084
   Posted 12/6/2017 8:00 AM (GMT -7)   
I see I was depressed back in August too :-/

@irishgal - I should think the chances of Kate seeing this are pretty slim. You would be better off making a new topic with Kate's name in the title to attract her attention.
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