An educational resource of the Ocular Immunology and Uveitis Foundation

Massachusetts Eye Research and Surgery Institution
About Us Patient Information Medical Professionals Services

Low Vision | Our Medical Advisor | Member Guidelines | Ask Dr. Foster | Uveitis Glossary | Pars Planitis Forum | Contact Us

Home Page
    > New Member Introductions
        > Brand new and unsure
New Topic

<< Prev Topic | Next Topic >>
Author
Comment
kristenboston
Registered User
(10/1/08 8:14 am)


Brand new and unsure
HI All,

What relief it is to have this site. My specialist is going to be talking to be today about IMT therapy(MTX).

But I am very concerned. I am a 30 yr old female and it is expected that my uveitis (AS- and b27- but with psoriasis and arthritis on both sides of the family) will "burn out" in 10 yrs. So I most likely have no choice but to do the IMT (I have battling my 3rd case of this right now).

As you all know, these drugs affect fertility, the liver, can alter our body chemistries resulting in cancer down the road, and of course whatever diseases come my way from being immunosupressed. I know others out there have dealt with this. Tell me about your experience. The possibility of sterilty and getting cancer in the short term (15-20 yrs) has been enough to scary the heck of me.

I need some reassurance that these drugs aren't that bad. Is there any?

I appreciate all and any help!

Warm regards,
Kristen

Edited by: kristenboston at: 10/1/08 10:51 am
Webmaster
Administrator
(10/1/08 11:13 am)


Re: Brand new and unsure
I think you have been misinformed or have been reading about the high dose use of MTX in treatment of cancer. Is that possible. While it is true that you should not try to conceive while on IMT therapy such as MTX, most of the protocols have effect on sterility. They can harm an unborn infant, thus the warning not to conceive while on them.

There is a long term study, NIH-funded, multi-study looking at the question of cancer risk associated with use of IMT therapy to treat uveitis and other IOD. The findings were VERY reassuring and found absoutely no increased risk for uveitis patients as a result of IMT use. I don't have the reference in front of me, but can look it up when I get home if you like.

In fact, IMTs such as Methotrexate have been associated with improved cardia outcomes (lower inflammation risk) in a large co-hort of adults taking MTX for treatment of RA compared with a group of RA patients not taking MTX.

What medications have been proposed for you. Some, of course, do carry the risks you mention (for example, cytoxan), but they are quite rarely used and then only when the choice is pretty much between blindness and possible sterility.

You diagnosis is very clear, you have identified a cause for your uveitis, and infact the treatments for your kind of uveitis are very, very successful. Mine was cured.

Let us know how your consultation goes. Relax if you can. Lean all that you need to know. You are on the path to recovery, not more illness.

This resource on the website may be helpful:
Autoimmune Uveitis and Its Treatment

Welcome. You have certainly found the right spot in the ethers. You are not alone.

Liz

kristenboston
Registered User
(10/1/08 1:10 pm)


Re: Brand new and unsure
Liz - you were so helpful!! I needed this context. My specialist (who is affiliated with Dr. Foster, here in Boston where I live) recommended the MTX, if my next flare up requires me going on oral prednisone (if it can be cured with the drops, then no MTX.) My Dr. also said that despite not having the B-27 marker (though someone in my family does) that I probably do have AS, which I will talk to my Rheumy about.

But my Dr. was very reassuring about how MTX really won't be a problem in the future, esp at such a low dose. He also said that I would be on it for 6 months (he predicted) so this may not be a long term thing.

Anyway, your post was extremely helpful. Reading everyone's opinions can be a good thing but also a scary thing. It is nice to have someone be as reassuring as they can. Thanks so much!!

Webmaster
Administrator
(10/1/08 9:16 pm)


Re: Brand new and unsure
Hi there. Nice to hear from you again. It really is a learning curve, isn't it. I found the UVEITIS GLOSSARY so helpful in understanding all of this.

Re: dosing length of time. My understanding of Dr. Foster's ITM protocol is 2 years AFTER you reach this goal: NO INFLAMMATION OFF ALL STEROID. The clock starts ticking when you reach that goal, then taken for 2 years and only after 2 years is it tapered. Not sure about the 6 month part? Check on that, would you.

Foster is aiming for a cure. His methods work.

MTX has been used for 40 years and is very effective. There are also many other ITMs that are used to treat uveitis. MTX is the first rung on the step ladder.

Liz

kristenboston
Registered User
(10/2/08 7:41 am)


Re: Brand new and unsure
Hi Liz,

Hm that is interesting about the 2 yrs of ITM. My specialist (Dr. Raizman, part of OCB) mentioned the 6 months of MTX for me. But this is if I get a flare up again bad enough to go on oral prednisone. So we won't entertain this option of ITM until I get a bad flare up again (and I will do my best to prevent this :-) Perhaps only 6 months as my uveitis cases aren't as bad as others? Not sure..but if the time comes, I will address the 6 month vs 2 yr ITM.

Many thanks for that tip!! I appreciate it!

Webmaster
Administrator
(10/2/08 8:26 am)


Re: Brand new and unsure
Perhaps a second opinion would be helpful in this situation? I know Raizman often refers complicated cases on to Dr. Foster, ones that need longer term therapy.

This is the idea. The immune system has decided that your eyes don't belong to you. It keeps attacking them. You take prednisone, treating the battle wounds but not stopping the war. Injury occurs each time (from the prednisone, and from the disease). The immune system resides in the body, not in the eyes. The immune system needs to be treated to get it to sto attacking your eyes.

With regard to MTX, it takes 6-12 weeks for the drug to have an effect on the immune system. Each person is different and the dose is often adjusted, so there are some more weeks. The goal is to find a dose where there is NO INFLAMMATION OFF ALL STEROID.

The literature is very, very clear about using IMT for treatment of uveitis. Relapse rates are lower the longer the medication is taken. You can get into remission (no flare ups) after 6 months of IMT. A DURABLE REMISSION is the goal, a cure, no recurrances once the medicaitons are withdrawn. That takes several years to accomplish. It just does.

Talk more with Dr. Raizman about the planning. And, please give him my regards.

Liz

Edited by: Webmaster at: 10/2/08 8:30 am
kristenboston
Registered User
(10/2/08 8:30 am)


Re: Brand new and unsure
Valuable information, Liz! I will absolutely discuss this with Dr. Raizman!! Thanks (again!) for your help!

<< Prev Topic | Next Topic >>


Topic Control Image Topic Commands
Click to receive email notification of replies Click to receive email notification of replies
Click to stop receiving email notification of replies Click to stop receiving email notification of replies
jump to:

- Home Page - New Member Introductions - Ocular Immunology and Uveitis Foundation, URL>>www.uveitis.org -

Low Vision Instructions | About Our Medical Advisor | Uveitis  Glossary | Office Directions  |  Contact Us



Powered By ezboard® Ver. 7.32
Copyright ©1999-2007 ezboard, Inc.