Prednisone and Cataracts

[Nancy C]

Hello,
I am new to this site and wish I had found you all months ago. Over the past few days I had more questions answered than in the past 6 months since my dxl. You all so sound incredible and strong! I will not bore you with all the details but in short, like many of you, was misdiagnosed until I ended up in the ER at Yale University and the in ICU in for 3 weeks last Oct of 2010. They say if I continued un treated I would have been gone in a month! Since then I have responded incredibly well to the routine protocols including IV cytoxan for 6 months and am currently on 5 mg of prednisone (which we will be stopping next week) Bactrim, Immuran, Norvasc for blood pressure and protonix and Os Cal of course!!
I wear contacts and last week noticed my left eye was blurry. Turns out I have cataracts caused by the steroids. (I am only 43) Has anyone else been diagnosed with cataracts as a result of the steroids? I need to have the surgery, which my rhumy agrees with, as I am so impaired I can barely drive but wanted to know if anyone else had this and if there were any strange side effects as a result of our disease. I may also do the lasix at the same time but am not sure.
Any advice you can give would be very much appreciated. Thanks so much!

[Sangye]

Hi Nancy, welcome to the group! I'm so glad to hear how well your treatment has gone.

I don't have cataracts so I can't help you with that. It does seem like they formed very quickly though. I had it in my head that it takes longer on pred to form them. But pred is a big trouble-maker, so who knows. I think you should definitely discuss the lasix surgery with a Wegs specialist. There may be contraindications with Wegs.

I hope you have a Wegs specialist. Mine at JHU recently told me it's "absolutely necessary" for all Weggies to have one. There. I can now take "Nag Nancy" off my To Do list for today.

[pberggren1]

I forget where Yale is?

It is hard to find a Rheumy that specializes is Wegs let alone a Opthamologist that does. My Opthamologist never heard of WG until I came around. He has been in practice for about 37 years.

I saw a different Opthamologist back in 2003 and he said I had slight cataracts in my left eye. I didn't notice any change in my vision and have never seen him since. My current Opthamologist said he has never seen any evidence of cataracts. My vision started to go a little blurry back in late 2007 and has stayed about the same since. A friend of mine gave me a pair of his glasses to use for playing pool. I playes a lot of pool back then and it really helped a lot. I won my cash pool league 2 years in a row - about $5,000.00.

How are you feeling overall? What were your origianl symptoms?

I'm sorry you didn't find us sooner. This site has been a God Send for me.

Take Care.

[elephant]

Welcome Nancy! I have glaucoma from the prednisone. It happened taking prednisone 60 mg twice in one year and being on high doses for 18 months. I have the same questions as Phil. Love to hear your story!

[Barbara1966]

Nancy,
Who you have for doctors at Yale?
I have: rheumatologist - Dr. Liana Fraenkel and pulmonary Dr Richard Matthay and Christine Argento.

Phil.
Yale is in New Haven, Connecticut

[Nancy C]

Yale is in New Haven CT. I live in Fairfield, CT. I know I need a WG specialist and am currently looking in CT. I have several Dr's at Yale who are all wonderful but dont always concur on my treatment plan. I took everyones recommendation and looked at the VF website and will pursue through there. If anyone has any recommendatios in CT or NY I would appreciate it!

Overall I am feeling really good compared to 6 months ago. I actually went back to work 2 weeks ago after being out on disability for 6 months. I work for a major insurance company and manage large national accounts. I am easing back in slowly and I have a great boss and folks that I work with that helped with my accounts while I was out. I have had a few issues (cataracts and minor surgery from a bad pap smear) since I have been back but have the luxury of working form home while I manage them and a great support team both at home( great husband and 5 kids ages 3 to13) and at work.

My original symptoms..hmmm. They started 2 years ago but were so isolated that I really never thought they were part of a bigger picture. Chronic colds and sinus infections that would take forever to clear, a rash on my stomach that was short lived but annoying which noone knew what caused it. Blood in my urine which after several visits to a urologist and procedures was chalked up to "some people just have small traces of blood in their urine but it is nothing to be concerned about", joint pain, swollen feet and ankles and pain on the bottom of my feet and finally in Sept 09 I was coughing up blood and erroneously diagnosed with pneumonia which my primary treated me for for 2 months until I became insistent that it was not pneumonia and something bigger. After starting over with the blood work I ended up at a local hospital severely anemic and dehydrated needing 4 blood transfusions. That hospital along with my PCP still could not determine what was wrong and were not even checking my kidney functions They sent me home and the next day my family brought me to Yale as I was coughing up so much blood my family thought I was going to die. The ER Dr suspected either WG's, Good Pastures or MPA. I I was in renal failure and days away from needing dialysis and put in ICU where a kidney biopsy gave the conclusive diagnosis. I was there for 3 weeks then another week in a regular room and then home.

[Nancy C]

Hello,

I also see Dr Fraenkel and Dr Bunin. I think they are wonderful. I see Dr Siner for pulmonary and Dr Dahl for nephrology.

[JanW]

That's quite a story, Nancy. So funny, I also had problems with my ankle and severe bottom of foot pain which is what led to my diagnosis in January. At the same time the bridge of my nose was collasping from the classic "saddle nose deformity" so I was absolutely taken seriously when I walked into the rheumy's office. Before he even had a diagnosis from the blood work I was in with my beloved surgeon, Robert Leibovics, who promptly scoped me and said that my airway was so narrow that it would require surgery (several eventually probably), which I had done in March. At some point he will also fix my nose. I too had the sinus problems, although not a severe as many here. For five years I was misdiagnosed with asthma and the steroids used to treat me caused severe osteoperosis, which is rare in pre-menapausal African-American women (as is WG -- I'm the only black person posting here, as far as I know.

I see Dr. Arthur Yee at Hospital for Special Surgery for rheumy (affiliated with Cornell) and he sees many WG patients. His colleague Robert Spira ran one of the Rituximab trials (this is a new treatment for WG with an old drug) and sees many also. HSS has had the top ranked rheumy dept in US for many years and they claim to be the largest group in the country (although I hasten to add that it is not a WG center like Mayo FL and MN, JHU, Cleveland Clinic or Boston University). My ENT is definitely the established US leader in ENT issues affecting WGs -- he ran the clinical practice at NIH years ago, and worked with the rheumy who heads CC WG's center -- several people here see her. He is one of the three surgeons in the world that does the kind of airway surgery I had, and people come to him worldwide for their saddle nose deformities.

Please let me know if you want any more info on these guys. Both very conservative and very patient friendly and extremely research and best practices oriented.

[jola57]

Hi Nancy, I have not heard of cataracts setting in so quickly, I wander if it was pre-existing and just gotten worse on pred. Both glaucoma dn cataracts are known side effects of pred but not that quickly.

[Nancy C]

Hello,
I know it is odd. I am only 43. I had an eye exam a few months after I was diagnosed and everything was fine. In any event I am going to have surgery in a few weeks to correct it. Hopefully that will be the end of it

Nancy