Doses of Methotrexate that work for pan uveitis

[linclan5]

I have had pan uveitis for 2 years, and just went on metotrexate. I have been on 15 mg a week for 4 weeks and see no improvement yet. I will be calling my rhumetologist this week, and I expect him to up the dose. I was just wondering what levels usually work, and at what point do they give up on methotrexate and try another drug?

[Mike Bartolatz]

much of this is dependent upon what the underlying cause is. sometimes Methotrexate and another class of drugs such as Cyclosporine are used. sometimes cellcept and cyclosporine are used or methotrexate or cellcept, imuran etc are used along with another class of drugs called Tumor Necrosis Factor A blocking drugs like Remicade or Humira are used.
i am baffled by the fact that you have been without a DMARD drug for posterior uveitis for two years now.
are you seeing an Ocular Immunologist, a very skilled opthalmologist trained to diagnose and treat the entire person so that the inflammation goes into remission if at all possible?
Methotrexate dose often goes to as high as about 25 for treating posterior uveitis. when it gets to this amount, they usually go to injectible form of the drug so that side effects are lower and less is needed to do the job of getting one to the goal of 'off all steroids without inflammation.'

where do you live so that I can suggest the closest ocular immunologist whom I fell can get you to remission for this potentiall vision robbing form of uveitis?
You may have to travel as not all doctors are 'created equal' in knowledge or ability.
Wish you the very best,
mike

[linclan5]

Thanks for the quick response. I live between Boston and NY. In addition to my local retina specialist, I have seen both Dr. Sampson in NY twice and I went up to Dr. Foster in Cabridge twice (I found out about both from this forum, so thank you) so I am in good hands. For the first year of my disease it was just an inflamed reina in the right eye eye that went away after prednisone. Then a year ago I developed iritis in both eyes, and only in the past 6 months did it develop into pan uveitis in the left eye (controlled by a steroid shot) and now in the right eye as well(and I am trying not to have a shot in this eye while I wait for the methotrexate to work). Then it took a month or so to get an appointment with a rheumatologist. You know how that goes. That is why I have only recently gone on Methotrexate. Luckily, I have always had one eye at a time that had good vision, so I have still been able to work and drive.
I heard that Methotrexate should work in a month or two at the most if it is going to work. I am only at one month right now, so I am trying to not be too impatient. I also heard that it works in over 70% or so of the cases, so I am still hopeful.
If I do not have some improvement by two months I think my local doctor (who knows Dr. Foster) and the rhumetologist will probably add a TNF drug, but I hope mtx alone will contol it. Do you know if it often takes 2 months for mtx to work?

[Mike Bartolatz]

each of us are different in how we respond to drugs. make sure you take your Folic Acid pill at LEAST 11 hours AFTER taking the MTX so that the Folic acid will not interfere with hour the MTX works. the amount of MTX may require upping dose several times and this could take about six months to figure out so please do be patient. if you get to the upper limit of about 25 ask to be put on the injectible form of MTX. you might also have to switch to a different antimetabolite such as Cellcept or Imuran alone or incombination with another class of med.

remember: the goal is off all steroid without inflammation. then your eyes have to be steroid free for TWO YEARS before the taper begins. to not go this period of time means you will most likely have to start over again on the TWO YEARs of off all steroids without inflammation.

You can also contact DR Foster or Dr Samson via Email if you need them. they will work with your local team to get you to Durable Remission.

Take care,
mike

[linclan5]

My disease is idiopathic and not linked to any underlying disease or gene, btw. No one had told me to wait to take the folic acid, so I will start doing that with this week's dose. My rheumatologist told me to split up the pills -- 3 pills in the am and 3 in the pm, so I was definitely taking the methotrexate close to when I took the folic acid. I will now take the mtx doses closer together and take the folic 11 hours after the mtx. Many Thanks for the advice.

[Mike Bartolatz]

it can take a decade or more before an underlying cause is determined. often Dr Foster will re do tests to see if antibody markers appear to lead to a diagnosis. 'ideopathic' just means they don't know at this time and is subject to change over time.
vascularization of the retina and posterior uveitis are frequently linked to autoimmune disease processes.

wish you the best,
mike

[linclan5]

FYI, My doctor upped my dose to 25mg of methotrexate, and now after two weeks of that dose(around 7 weeks total on mtx) my iritis is totally gone and my poterior uveitis has improved markedly, as has my vision. My doctors expect continued improvement. Also, I have had no side effects so far from the mtx. Phew! Thanks for all the info and support.

[Mike Bartolatz]

now the countdown begins. off all steroid without inflammation for TWO YEARS before you taper off the Methotrexate. Lets pray you stay quiet.

God Bless,
mike