Uveitis and the MUST study
I have just been diagnosed with posterior Uveitis. I have been asked to join the MUST study at Johns Hopkins. This study will use either corticosteroid implants (which will cause cataracts within 2 years) or I will be placed in a group that uses oral corticosteroids, with other complications. I'm so worried about which group to be in. I do not need to join the study, but I would like to help in finding better ways to cure this disease. My questions are: 1) Can Uveitis be cured or stopped? 2) if on the implants, and the Uveitis appears to go away, can the implants removed? Can they be stoped from releasing the meds? 3) Which do you consider safer, implants or oral treatment? 4) Also, should I be careful in the bright sun? Thank you so much for this forum. I have been distraught and needed someone to answer my questions. thanks.
Jane D, WELCOME to the group!
have other options such as Immunomodulation using DMARD drugs been mentioned to you or have you failed them? what form of uveitis do you have? have you had a second opionion? Dr Nguyen at John's hopkins is an excellent ocular immunologist who may be able to get your uveitis under control without use of just corticosteroids.
I have to leave my home right now and will get back to you in a post at the LEARINGING ABOUT OID FORUM of this site.
we are here to help you through all of this and we do understand the distress that this can cause. we are here for this reason and will help you.
Type of Uveitis
Thank you for responding so quickly. The type of Uveitis I have is due to Birdshot Retinochoroidopathy. No one has mentioned any other options, other than implants or oral systemic therapy. I was seen by Dr. Peters but he is leaving Hopkins for a while. I would be seen by Dr. Dunn if I choose the MUST study. I will lookup the options that you mentioned... I'm just too young for all this!!! thanks.
Re: Type of Uveitis
There is contact information for DR Nguyen at www.uveitis.org our parent site for the Ocular Immunology and Uveitis Foundation in Cambridge MA. USA. it is located in the patient information section of the site. Dr Nguyen is fellowship level trained in Retina and is also fellowhip level trained in Ocular Immunology and is a superb specialist. he is NOT with the Uveitis clinic there at john's hopkins but is in the RETINA department there.
If it were my eyes with Birdshot choroidopathy, I would see him. often chemotherapeutic immunomodulation can control Birdshot.
I was a teenager when I came down with Uveitis over 40 years ago. I only had corticosteroids over the years which lead to damage to my eyes from this treatment approach. I was never offered chemotherapeutic immunomodulation for my intermediate uveitis. If I had, my vision would most likely be much better than it is today with significant permanent vision loss. Many of our members here including very small children are undergoing this form of treatment to prevent this from happening from various forms of uveitis. some of our members have Birdshot or other forms of white dot syndromes and they can help you through this.
Please contact Dr Nguyen, tell him that you were sent to him by DR Foster's support group in Cambridge, MA USA. he is aware of who we are and this can expedite an appointment for you. I have sent several people to him this past month and they are very happy with his care.
Wishing you the very best,
Mike Bartolatz
Facilitator, Learing about Ocular Inflammatory Disease
Dr. Nguyen
Thank you very much for your referral. I have an appointment next Thursday the 14th to see Dr. Nguyen. As the scheduler was taking down my information a doctor walked by, he saw my diagnosis and said, she needs to see Dr. Nguyen. I feel a great relief. I just can't thank you enough for your web-site support group. I'll keep you posted..
Re: Dr. Nguyen
JaneD,
please do keep us posted about your treatment as you go forward. I hope the appointment with DR Nguyen goes very well for you too.
please put any new comments in a Post to the 'support and coping' forum of this site or, to the Learning about OID forum as is appropropriate.
Johns Hopkins
HI Jane. My name is Dave. I have pars planitis/chronic uveitis for over 4 years now. I have been seeing Dr. Nguyen for over one year now. How did your appointment go? Did you like his bow tie? I was there on 2/12 for my visit. I am in the LX211 study. I just missed you by 2 days!
I was on CellCept for a few months prior to getting in the LX trial.
The LX211 has improved my right eye from 20/25 to 20/12. I just signed up for a 6 month extension. Dr. Nguyen feels the LX is working great for me. Hopefully it will be available for more of us very soon. If you have any questions please feel free to contact me at rickdr At hotmail dot com. Good luck! Dave
Re: Johns Hopkins
I saw Dr Dunn at Hopkins last week and he explained this study to me for me to consider entering. One thing that I particularly remember him saying about this study is that you are randomised to a treatment. You don't pick whether you get the steriod implant or the immunosuppressant meds it is done by a computer. That was enough for me to say no thank you. The potential side effects of the implant seemed to provide greater quality of life issues than taking a daily med.
Re: Johns Hopkins
please consider seeing DR Nguyen there at John's Hopkins for a second opinion and use of immunomodudulation to stop your MCP. his contact information can be found at our parent site, ww.uveitis.org in the patient information section of the site. DR Nguyen is a fellowship trained ocular Immunologist as well as fellowhip level trained Retina specialist at Harvard University. He is outstanding in his abilities. I you decide to see him, please tell him that you have been sent to him through DR Foster's online support group efforts. he can expedite your appointment.
so many people respond favorably to IMT that it is actually considered to be the standard treatment at facilities such as the Ocular immunology and uveitis foundation with steroid implant used as a last resort depending on type of uveitis present. you can always use it later on if IMT doesn't work. the steroid implant is guaranteed to cause Cataracts, possible glaucoma etc.
the main thing is to try a steroid sparing approach to treatment if at all possible in my LAY opinion.
Please join in the discussion, ask questions and we will do our best to help you through this.
Re: Johns Hopkins
Not familiar with corticosteroid implants, guess something to look up. Had steriod IVs in the past... and before that oral steroids for a time though think way too high a dose as all of a sudden was walking with a cane so I tapered myself off. Before that the usual drops but was given a clean report last appt. Will always keep tabs on my eyes though.
Re: Uveitis and the MUST study
Hi Jane,
I hope you are getting all of the information you need for your treatment. I am on the MUST study, so if you have not made up your mind I would be happy to share what I have been through. I was on steroids for 7 months, when they started to taper them down,40 - 15 mg, my symptoms reappeared. I now have the implants and my vision has really improved.
I have not gotten cataracts yet, it has been 7 months, although I do see the begining of Glucoma. I inquired on the other treatments but was told that they would not work best for me. I hope they will for you! The first surgery was not bad, the second eye was tough. Let me know if you need more info.
All the best,
Peggy
I was there on 2/12 for my visit. I am in the LX211 study. I just missed you by 2 days! 
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies