No Vitrectomy for me
Thank you all for replying to my post about having had a Vitrectomy. I have been back and forth in my mind about what to do. I saw my Rheumy this morning. He talked to me about switching from the MTX to Cellcept. He said he would not be quick to have the surgery without trying this drug first. We talked at length about the risks and what bothers me is I have to take it EVERY day!!!! I am starting on 500mg for a week and then 1000mg for 3 weeks and then go for lab work. I will admit, I am afraid of this drug. I know how I felt on the MTX for 2 days afterwards and it wasn't pretty but he told me each drug is different and I might not have the same side effects. I also do not have to take the folic acid anymore. I feel like my head is spinning and I am starting all over again. I really want to scream!!!!
Kristy,
try to calm down if at all possible. Many of our members are on Cellcept and cellcept and other drugs combined without side effects. if you pay for your drugs, there is a coupon for money off the cellcept available in a link in the LEARNING ABOUT OID forum that I am the facilitator here at the UOSG support group. it is also available as generic but it is new so I don't know how people respond to it at this time.
I can't recall if you have systemic autoimmune disease besides the uveitis. the cellcept can help with that in many instances as well if you do.
Re: No Vitrectomy for me
Thanks Mike.
This is the only place I know I can come where people understand what it is like to go through this.
I have insurance (Cobra) but will check out that coupon, thank you!
It is unknown why I have this. I had blood work done twice, once this year and once last year testing me for everything under the sun as the lady in the lab put it. I also had 2 sets of x-rays taken. All came back normal.
I have tried looking Cellcept up online and the things I am reading are enough to make me say "I do not want this drug." I had to quit reading. My Rheumy said I can take it anytime during the day but I am wondering if bedtime would be best in case I feel sick. I can't find that answer online. I took my MTX at bedtime so I guess I will stick with that.
I just feel like a guinea pig! Had to adjust the MTX several times and now I feel like I am starting over and praying this works.
I just feel like my eyes will never be "normal" again, well, I would settle for them being cell free if I can't have normal. The floaters drive me crazy. Seems like everything is driving m crazy lately. Ha Ha.
Re: No Vitrectomy for me
Hey Mike,
I just called my pharmacy and found out it is only $10 for a month. Whew. It would have been $460 without insurance!!!!!
Re: No Vitrectomy for me
I do understand the anxiety that pars planitis brings on. try to get it under control as for me Depression reared it's ugly head along with it. I had to take antidepressant and anti anxiety drugs but it got my head back on straight to use them.
the study on use of various DMARD and other classes of drugs to treat uveitis basically said they didn't cause cancer. the TNF-A drugs seem to elevate the risk of lymphoma however. these are Biological response modifying drugs not DMARD drugs such as Methotrexate and Cellcept.
you can read the abstract report in the LEARNING ABOUT OID forum here at the UOSG support group. click on HOMEPAGE and you will be redirected to our list of forums. then click on the above forum. LIZ posted the article, it might be under WEBMASTER.
I wish that Luveniq were approved at this time as it seems to control uveitis and pars planitis and posterior uveitis in allot of people. hopefully it will become available in 2010, early in the year.
in about 60% of people with Pars planitis, no connection is ever found to a systemic illness or autoimmune disease process. just write stuff down if symptoms anywhere in your body occur, then run them by us for comment and we will do our best to steer you to information that MIGHT be related to some condition. by writing things down, you put them out of your mind and you can relax a bit, then present them to your doctors at next visits.
the main thing is to stop the attack on your eyes. doing something helps to give you some control over the situation. doing nothing at all can sometimes cause vision loss. Cellcept works very well in some people with different types of pars plantitis and posterior uveitis.sometimes cyclosporine is added along with it just like with Methotrexate. Cyclosporine impacts cytokine production in uveitis. a molecule related to it is what is the active ingredient in Luveniq which had very good results in the phase III trials for uveitis. another drug just approved for plaque psoriasis called Stelara also acts on IL23 and IL12 and indirectl IL17. it may well prove beneficial in Uveitis and is going to be studied in the European Union for Uveitis. another drug Dr Foster is testing before even phase I trial also blocks IL17 and is showing allot of promise so there is hope that things are being developed for uveitis that will make allot of the drugs obsolete in the coming years.
wishing you the best and hope that this eases your mind a bit.
here is the link to the artice on Cancer Mortality in uveitis patients treated with chemotherapeutic drugs and biological Response Modifiers that target TNF-A
I was on cellcept for about a year, and I had absolutely no side effects. I think my dose was 1000 mg a day. I felt totally fine while I was on it. I'd stop reading about it if I were you, because all those warnings etc are enough to scare the daylights out of anyone! If you have doctors you trust, go with their recommendations.
Re: No Vitrectomy for me
Mary I hope I am just like you when you took this - no side effects!!! I am starting them tonight. 2 days late but I cleared it with my Rheuny. Was in the urgent care Friday night with one heck of a sinus infection and Saturday developed a nasty stomach bug which really knocked me down. So tonight at bedtime I am taking my first one. Pretty lavender pills that can pack a punch I am sure. I am scared. I was scared with the MTX but the worst with that was the extreme fatigue. Here we go folks............
Mu husband had had the same meds that you are taking, first mtx pills, the mtx injectable. The shots bypass your stomach and does alleviate some nausea.
Then the mtx stopped working and he moved up to cellcept and cyclosporin. I was horrified when I read the side effects, too, but you have to remember the side effects listed are probably for a much higher dose than you or my husband are taking as these meds are used sometimes for people with liver and kidney transplants.
I hate to tell you that some days he's pretty tired, but we try to adjust our schedules accordingly. (I have read that some people do not get that many side effects though.)
In one of your posts I read that you wondered why you have this. I want to share with you that my husband asked his rheumatologist one day when he was having a bad day and very, very distressed, why me? I don't drink or smoke, blah, blah, blah. She told him it was nothing that he ever did, something in his dna that caused this. (he has birdshot)
But i am grateful to hear from some of Mike's posts that there are some new drugs on the horizon for uveitis patients.
I also was at MERSI recently and heard that the birdshot symposium papers will be published shortly.
My big fear with him being on these meds it to stay away from sick people as his immune system is now compromised. He's been on them since 5/2009.
So I am worried about the upcoming flu season. He had the regular flu shot and will have to get the h1n1.
Wishing you all the best and hope this medicine works for you. deb
Re: cellcept
Hi Deb.
I have never heard of birdshot. I have intermediate Uveitis. I pray that your husband's eyes will respond to the meds he is on. It is so frustrating when one doesn't work or stops working and you have to start over on something else.
I have spent mant a day crying asking "Why me, why can't I have my normal eyes back?"
I started my Cellcept last night. This morning I feel fine, no nausea at all, actually woke up to a growling stomach but do feel a little tired. Not at all like when I was on the MTX but then again it is only my first dose. While on the MTX I could not drive for 2 days after dosing due to the fatigue but I know I could drive today, just feel like I didn't get enough sleep last night. A nap is definitely on the schedule for today.
Re: cellcept
Kristy,
It is great to hear that you don't have any side effects on the cellcept. Lets hope that this remains the case and that the cellcept will quiet your eyes down and that it will get you to remission.
those 'why me' thoughts always come up in ones mind when life throughs you a curve ball. If you can develop a positive attitude it can really help get all of this under control. I know this is hard to do sometimes but writing things down rather than thinking about them constantly puts them in a place that helps to keep a positive attitude.
when we get into a 'why me' state no one wants to be around us as it is a negative attitude. if depression rears it's ugly head then we have to get counseling or medications to control it. today I don't have depression but anxiety is an issue I have struggled with all of my life and it still impacts how I approach life on some days. I have to say to myself, I'm not going to allow this to affect me today and it usually dissipates. it's an ongoing struggle for me.
talking about things here at the support group also helps as we do understand allot of the things you are going through and can empathize with you.
Thanks Mike!
I do take medication for anxiety and have for about 4 years. I wouldn't say I am depressed but I do have my days. Last night I actully thought about starting a journal about everything I have been through with my eyes and how I feel. I do keep it all inside and I have found that I have started pushing people away and I truly want to stop doing that. I told a friend of mine last night that I feel so alone in this process of dealing with my eyes.
I have always said "This will not defeat me" but sometimes I wonder if it will.
Ok enough of my blabbing! Think I will start that journal now.
Re: cellcept
let us know how the journal goes. I know doing this has helped allot of our members in the past to cope with all of this. it also keeps a record of symptoms that we often forget to tell our doctors so take it with you to your appointments.
Re: cellcept
I never would have thought to take it to my Dr. appt. Great idea Mike, thanks.
After only two doses of Cellcept, my floaters are all gone. I had had them for about a week straight, so bad that it started to interfere with driving. I know it can't possibly be due to only two doses but sure is funny that they have disappeared so suddenly. I had the spots and the "spider webs."
I did talk to the nurse at my Rheumatologist's office yesterday. I found out I do have to get both of the flu shots this year. I have never had one. Knock wood, I have never had the flu but sure am not chancing it this year.
So far, and I hope I am not jinxing myself, this drug is amazing. Much better than the MTX was for me.
Re: cellcept
Many of our members have said that about Cellcept but your response if correct in such a short time is AMAZING.
I still have the 'cobwebs' obstructing my vision and my eyes have been 'quiet' for about 4 years now and they are in both eyes. I still can't drive at night because of them floating across my vision in oncoming traffic and I think something is moving across the road in front of me.
my vitreous in both eyes is starting to detach as well (normal for us at about 60 or so).
Wish you continued good response from the Cellcept and hope that the two year period of quiet eyes off all steroids starts at your next appointment.
CellCept
Hello. Just an FYI for you. I am a 45 yr old male, w/ PP/uveitis/(and all that goes along with it), for 6 years. I used CellCept on two different occasions. Once for 7 months and then for 9 months the second time. I had no side effects. My dose was 1500mg 2x a day. All blood work was ok, and it was checked every 6 weeks. I was in a clinical trial in between the CC runs. I now stopped the CC again, but I still am on prednisone 12.5mg/day And I now am going into another trial on Oct 21. So, hang in there, do what you have to do and it will work out. That's my hope!
Take care,
Dave
Re: CellCept
DO NOT get the 'nasal H1N1' vaccine, it is a partially LIVE virus vaccine. NEVER take the Partially live vaccines of ANY kind while on Immunomodulatory therapy, oral steroids etc as you can become very sick with whatever the vaccine is for. the Flu shots injected, are fine. Always run anything like this through your speciaists controlling the IMT drugs to make sure there will be no problems.
Re: CellCept
Don't want to get vaccine. Hoping my nephew, who is staying with me until the second week of Nov., doesn't bring flu (or anything else!) from high school! I'm on mtx ...
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