HealingWell
Search Close Search
☰

Retinal Vasulitis complication of UC

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/29/2010 8:06 PM (GMT 0)
I just got back from my eye doctor because of some vision disturbances I was getting in my right eye.  In actuality as I was waiting I noticed I had a small area (lower right peripherial)of my vision where it had been lost.  Come to find out it was caused by a blocked blood vessel in my eye resulting in a small loss of vision.  I initially thought some of the vision issues were due to the drugs but my Dr. said it was associated with the UC and the autoimmune system.  I went online and started looking up information and come to find out that retinal vasculitis is a complication of UC.  Was wondering if anyone has experienced this complication and what was the treatment.  It doesn't sound very promising - if you lose blood flow to the retina for any length of time - that area can become permanently damaged.  Now I am nervous.  Although the area where my vision is gone is very small - how do I know that I won't have another vessel that becomes blocked and lose more.  I have to see the retina specialist next Wednesday.  I am really coming to hate UC and all the terrible things it and its medications bring with it.
Posted 9/29/2010 8:23 PM (GMT 0)
Very interesting.  I posted a response to your last post about vision related issues because what I experienced was and is a little different from what you are describing.  You mentioned a small area in where you have a loss of vision.  That's very specific and would definitely relate to the retina.  I don't want to bore you again with my story but when my UC went out of wack my eosinophil count went extremely elevated and to make a long story short the docs wrongly thought I had a blood disorder that had nothing to do with my UC.  Even my GI doc at the time said my elevated eosinophil count was not related to my colitis.  In the end because they thought I had a blood disorder they put me on leukemic medication along with a high dose of prednisone.  It was then right away that I started to develop eye disturbances.  I eventually stopped taking these chemo drugs because I eventually felt these docs didn't know what they were doing.

I developed dry eyes, an increase in floaters and started to notice an aversion to very bright sun.  I went to 4 different eye doctors and even went to the famous Will Eye Center in Philadelphia and also to Mass Eye and Ear in Boston.  I also saw two diffrent retinal specialists as well.   All 8 docs in total said there was nothing wrong with me eyes at all except maybe being dry.  The floaters are a by product of getting older and of the 8 eye doctors 4 of them had them themselves.

I then went to an immunologist and a new GI doc in Boston who immediately knew that certain people with UC who are of Asian descent of which I am can have elevated eosinophils as a marker of their UC.  As soon as I got better control of my colitis with the Imuran my eosinophil counts normalized. 

So in the end I developed eye issues that are now more of a nuisance than a real threat to my vision in general.  These are obviously by products or side effects from the strong leukemic drugs that I was put on that I really didn't need in the end.  I knew about the relationship between UC and uvietis but not what your talking about.  Good to know.  Again thanks for your post and sorry I couldn't be of more help.  I just wanted to share a side story about my eyes.

MyUC

Posted 9/29/2010 8:36 PM (GMT 0)
It is interesting that you mention that you started having problems after starting the leukemic meds.  I have read the 6MP is used to treat childhood leukemia and wonder if there is a tie.  I noticed the vision disturbance approx 1.5 weeks ago which is about when I started this new med.  I will have to ask.  If there is a tie - I would rather deal with the UC flare than the vision loss!!
Posted 9/29/2010 8:46 PM (GMT 0)
Glad to have maybe helped.  Again the med that I was taking was a new state of the art leukemic drug at a high dosage (nothing like Imuran).  I felt all the eye stuff the week I started the prednisone (60 mg start).  I then piggy backed it with the leukmic drug and it make it worse.  I stopped taking anything for about 8 months but the damage was done.  My floaters are here to stay, my eyes are chronically dry but no issues to the vision itself.  I don't feel the Imuran has done anything to my eyes at all.  To be honest I haven't felt this good in years although I put in eye drops for lubrication now and then and I use my sunglasses more often.  The dosages we take 6MP or Imuran are not that high when compared to other catagories of patients.  The other way I look at it is that many people get floaters and dry eyes who have never taken any meds at all.  So all I can do is guess.  Good luck with this.  Keep posting.

MyUC

Posted 9/30/2010 2:30 AM (GMT 0)
Sorry to read that you have developed a retinal problem. It's really important for IBDers to immediately check out vision disturbances with their ophthalmologist. A while back my very IBD-experienced gastroenterologist decided that I should take Drisdol weekly to raise my serum vitamin D level; a couple hours after taking the 1st dose I got a violent left-sided headache and vascular flashes in my left eye. When I phoned the ophthal, this doctor wanted me to come to the office right away, which I did. After dilating the eye with drops, the opthal found that a posterior vitrious detachment had occurred-- from the back of the eye, rather than from the sides, where it usually happens due to aging, according to my ophthal. This PVD is less serious than retinal detachment, but still an ongoing nuisance-- I cannot get rid of it because the matter that "broke away" is trapped between the back of my eyeball & my retina! So-- I can understand that you are rightly disturbed by your diagnosis of retinal vasculitis, which may be induced by GI medications. Are you in the U.S.? You might want to look at the FDA Website-- because they do invite patient input about prescription medicine reactions. Best wishes and keep us posted on your situation. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/30/2010 3:08 AM (GMT 0)
Thankyou for your input! Yes I am from the US.  The information you shared is rather bothersome - If IBD patients can be susceptible to vision/retina issues and it is important to followup why don't they tell you that.  I initially thought the vision disturbance I was experiencing was due to headache and didn't pay much attention to it.  I'm finding that if you have an issue - time is important.  Especially if it concerns blood flow to the retina.  The little bit of internet research I've done indicates that blood flow needs to be restored quickly or permanent damage will occur. My continued concern is now how can I be assured that I won't get more blockages.  I have my GI apt tomorrow and will have a ton of questions.
Posted 9/30/2010 11:47 AM (GMT 0)
Unfortunately many doctors don't tell you about the extra manifestation of having Uc or any other auto immune disease. I have a lot of issues with my eyes, but I'm glad that the overall structure of my eye is good (but I do have an astigmatism and need reading glasses). I have chronic dry eye and use Restasis and in the past I have had numerous eye infections including irisits. I had to use steroid/antibiotic eye drops a lot during that time. But to know that this is yet another thing we have to worry about is upsetting. It's not like we have enough to deal with ya?!
✚ New Topic ✚ Reply