Crohn's-Related Uveitis

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Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 1/18/2010 7:25 AM (GMT -7)   

Haven't posted in a while... been in a bit of a rough patch.

Back in October, I lost 90% of my vision due to Crohn’s-related intermediate uveitis (pars planitis). I couldn’t drive or do much of anything. Anyway, I started on 60 mg of prednisone daily and switched from Humira to Cimzia (the Humira wasn’t controlling my Crohn’s symptoms and my ophthalmologist thought a different immunosuppressant might keep the uveitis in check). I felt great at first, as I always do for the first few weeks on prednisone… The inflammation in my eyes went down quickly and I even went a couple weeks with absolutely no Crohn’s symptoms, but once I tapered down to 10 mg, the inflammation started back up again.

My vision is still 20/20 right now (just an insane amount of floaters), but my doctor told me to stop tapering until the Cimzia has had enough time to take effect. As soon as he said that, I started crying. I went along with it for a few weeks, but I can’t stand it anymore. I don’t think I have to list the side effects; you all are familiar with them, I’m sure. And while most of them have quieted now that I’m down to 10 mg, the joint pain in my back is still killing me and the weight issues (weight gain, moon face, buffalo hump, round trunk) are driving me crazy.

I can’t stand to look at myself in the mirror. I barely even recognize myself. And I don’t know if this is a direct side effect from the pred or an indirect one from all the weight stuff, but I am in a deep, deep depression right now and I cannot see my way out of it. I have to get off this stuff.

I don’t know what other treatment options I have left. I’ve tried steroid drops (though they are never likely to reach the area of inflammation with pars planitis), steroid injections and cryotherapy. Humira didn’t touch it and Cimzia doesn’t seem to be doing the trick either. If anyone here has dealt with intermediate uveitis, I’d really appreciate your input. Specifically— since I feel like I’ve exhausted my steroid options— I’d like to know if anyone has had more experience with immunosuppressants/immunomodulators as uveitis treatments.

I’d appreciate any advice you could give me. I’m really worried that my mental health is deteriorating too quickly to stay on this drug much longer.


22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Cimzia, 10 mg prednisone.


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 1/18/2010 7:26 AM (GMT -7)   
By the way, I’m trying to get in to see my doctor sometime this week to talk about it… I’d just like to hear from anyone who has been through this in the meantime (I’m sure you guys understand…)
22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Cimzia, 10 mg prednisone.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/18/2010 7:42 AM (GMT -7)   
Hi Sarah_B I don't have any experience with the Uveitis, but just wanted to send you some hugs.  I know Pred is a miserable med but it sounds like its keeping the Uveitis under control.  I am glad you have a doctor appt soon, as I think maybe adding some other med into the mix to help lift your spirits.  I always call Pred the necessary evil.  It works to get the inflammation down quickly, but the side effects are miserable.  Maybe you could switch to Entocort??  It is still a steroid, but has less side effects.  Good luck and keep us posted on how your doctor visit goes.
 
Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 1/18/2010 7:46 AM (GMT -7)   
I haven't been through this specifically, but I HIGHLY recommend an anti-depressant. I know it seems like just another pill added to the top of all of the ones we Chronies already take, but it has helped me deal with depression more than you can imagine.
Just a thought.

Hope you feel better and everything works out.
_____________________________
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Pentasa 1 gm/4x daily; 6-MP 150 mg; Entocort 9mg


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/18/2010 3:56 PM (GMT -7)   
I would have you ophthalmologist send you to a retinal specaillist. There are newer drugs out there that help reduce swelling, including injections directly into the eye...(I know this sounds scary but it has helped many people and after you have it done once you will see that it was really not that bad, they do numb the area.) One of these meds is ment for long term release into the eye with only one injection to get the capsule in. But if you have not seen a retinal sep. or a VERY good general ophth. then you might want to do that.

If you don't feel that your eye dr or GI are working together then you need to tell them to, or look into getting a new one or both.

I hope some of this helped.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 1/18/2010 5:26 PM (GMT -7)   
Regarding the uveitis, I have just one other possible suggestion. (I wrote about this recently for someone who asked, but I can't find the thread using the search function, so sorry to repeat myself.) Total enteral nutrition, temporary use of a complete liquid diet to induce remission, is an old but effective treatment for Crohn's disease that is little used in the US. There is little data on its use to control the inflammatory eye conditions associated with Crohn's, but there was an interesting case report published in 2008 in the Journal of Clinical Gastroenterology:

http://www.ncbi.nlm.nih.gov/pubmed/18344883?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1
 

It describes a patient with severe Crohn's who had tried all the usual medications, ultimately was on Remicade for a while, but developed almost complete vision loss from scleritis in spite of them Remicade treatment. Her doctors stopped all medications and put her on total enteral nutrition instead (the Modulen IBD mentioned in the article title is an enteral nutrition product). She went into full remission and her vision returned within three weeks of starting enteral nutrition.

Just a thought, in case your doctor would be interested in looking up the report. When enteral nutrition works to control Crohn's (not everyone responds), it generally is effective in controlling the extraintestinal symptoms as well.

Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 1/19/2010 7:04 AM (GMT -7)   

Thank you guys so much for your responses.

 

jesse's_girl: I didn't mention in my post, but my ophthalmologist is actually a retina and vitreous specialist.  I have had steroid injections in my eye, but they did not work (in fact, my major vision loss in October happened less than a week after an injection).  I was not aware of the extended-release capsule injection, though.  Have you or anyone you know had any experience with it?

 

Writer: I have never tried a liquid diet for CD and I had no idea it could help with extraintestinal symptoms.  Thanks a lot for the input; I will definitely look into it and bring it up with my ophthalmologist when I see him next week.


22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Cimzia, 10 mg prednisone.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 1/19/2010 7:59 AM (GMT -7)   
Sarah...just wanted to chime in on getting some help on the emotional side. I hope you tell your doctor all about the feelings you are having. Yes, a lot is probably the pred, but I also think you have been through a lot and should keep talking things out. Even if you don't get anti depress meds, maybe you can get into a therapist. I found the person to talk to was all I needed (and am thinking about going to see one again now for other issues). Keep talking to us too...you know we will understand

As far as the floaters...I have a bunch of those too, but no other major eye symptoms. I thought mine were due to three bouts of conjunctivitis, but I am starting to think they are Cd related. My hubbys cousin was recently dx'd with CD and had terrible floaters. he had a surgical repair that was horrilbe (don't know if it was him, a bad doc, or just that thing that happens) so I am not doing anything about mine. Are you doing anything about the floaters?
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 1/19/2010 8:31 AM (GMT -7)   
Hey Habs,

Thanks for your concern. I’m in regular therapy and it’s been a lot of help. Sometimes it isn’t quite enough, though, and I have considered antidepressants a few times, but never committed to them. I definitely consider it an option (though if I were able to get off prednisone, it would be a huge relief mentally and physically).

The floaters are definitely a result of the uveitis for me. They were the first sign of the inflammation, followed by flashes in the side of my vision (although the flashes are not always present for those with uveitis). I generally am able to gauge how bad the inflammation is by how many floaters I have. I had just the floaters and flashes for a while before the vision loss, so if you do have a considerable amount of floaters (and I’m talking A LOT) I’d say it’s possible you could have a mild case of uveitis.

What sort of surgical repair did your husband’s cousin have? Usually, I think patients are told just to get used to them.
22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Cimzia, 10 mg prednisone.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 1/19/2010 8:49 AM (GMT -7)   
I wish I could say what the surgery was....cousin does not openly talk about his CD care even with me. I get bits and pieces so I am not sure what procedure it was. I am going to talk to him about it again, but we missed a recent get together so it will be a while.

I have always been told to just adapt to mine...I don't have enough yet to be overly concerned, just preparing for the future.

Take care Sarah
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 1/19/2010 6:09 PM (GMT -7)   
I just wanted to chime in on the emotional effects of the prednisone. I can tell you it made me a crazy person. And as soon as i tapered down to 10 mg I noticed a huge difference in attitude. I really feel that it changed me chemically. I had panic attacks, heart rate would accellerate etc. I would cry all the time. (and i never cry) I would need my husband just to hold me and tell me everything was going to be alright. I could not even think logically or write an email. I can tell you as soon as I was off pred. it all went away. Crazy feeling! I would have definitely needed an anti-depressant if I stayed on prednisone. I hope you feel better! Good luck and keep us posted!
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/19/2010 6:49 PM (GMT -7)   
Sarah,
I work for a retinal spec. (I am a retinal photographer) I can not say that the slow release works for everyone as each and every case is different (as is the dx), however I have seen some patients make very good progress on it. The med is called Ozurdex. I am not sure if it would be an option for you or if there are other issues that would not make you a good candidate. Before you do anything make sure that your insurance will cover the med. If they don't then there is a financial assistance program. I think that the approved dx is macular edema, but the dr may feel that it may be a benefit to you. He/She may have already taken that thought off the table for some reason though, but it can't hurt to ask.

To All: Please keep in mind that although flashes of light and floaters can often be associated with many different dx one that you really need to watch for is a retinal detachment which has some of the same type of symptoms. Please if you have sudden onset of flashes and floaters you really need to be seen by you eye dr asap.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 1/25/2010 2:06 PM (GMT -7)   
Thanks for your responses...

Saw my eye doctor today. He passed the buck to my GI. Getting pretty tired of all this.
22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Cimzia, 10 mg prednisone.


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/25/2010 5:17 PM (GMT -7)   
I can understand why you are frustrated! being tossed back and forth gets dizzying! Hang in there and hopefully you GI will either have some better answers for you or can refer you to another ret. spec. Stick to your guns and ask them to try everything and anything before you give up! GOOD LUCK!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj

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