Step after MTX...Remicade?
Hello. I am so glad to see stories of hope! Thank you and please keep them coming.
As I read I see so many of you who say that Remicade has been quite the blessing. Once remicade is started how often are the infusions administered and for how long? What other meds are or have your children been on while taking the remicade? What are the side effects? Can your kids keep playing sports or are they too tired?
Rebekah was diagnosed over a year ago. When we get inflamation down and discontinue the steroids the inflamation comes back. That has been the cycle along with battling pressures that have gone into high 30's. We just started the steroids again....The doctor mom in me believes that when we go back down for the next visit, the inflamation will be trace, and pressures will start to rise again. She has started to form cateracts.
I also see some talk of cellcept. I have been reading alot and it appears that cellcept is the same kind of drug as methotrexate. We have already maxed out that dose...
I wish you all lived next door to me so we could have coffee, laugh and cry together. I could use a little of all of that right now.
Drew was on remicade for 2 1/2 years. It starts 1st infusion, then another infusion the next week, then 2 weeks, and monthly. We went to every 8 weeks at one point but he also had a growth spurt at this time and the dose was too infrequent and low. We went back to every 4 weeks. We did have to stop in June because he developed a severe rash with it. But he been in remission since last Sept. He took mtx with his remicade.
It truly saved his vision. In one week he went from being able to see fairly clearly to being 5ft from our faces and not being able to our facial features- this was when we started remicade. His vision was almost clear in 2 weeks time.
The mtx tends to cause him more side effects than the remicade did. He would sleep while he was getting remicade and on the way home. The next day, you couldn't even tell he'd had anything. He played soccer and basketball, is in 4H and plays drums in the band.
Drew has had one cataract removed with lens implant.
We are in the process of contacts right now- makes me nervous but he's trying to prove that he's responsible.
Good luck and we'll be thinking and praying for you!
Carey
Thank you for responding. It was good to hear that Drew was able to continue to be a "kid" while on Remicade. I was really afraid that it would make her really tired and she would not be able to play sports, etc. How far did you have to travel for the treatments?
So after he started remicade the inflamation went away and he was able to discontinue steroid drops all together? What about other drops...did he take any others?
How long did Drew have Uveitis before his vision started to diminish? Rebekah has had only a small decrease in vision, but it has all happened in the last 10 weeks (like 15 points in one eye). I know that this disease affects everyone different...I think it is just nice to be able to compare. Does that sound crazy?
Re: Step after MTX...Remicade?
We traveled about an hour and half (85 miles) but then his peditrician agreed to oversee in the infusion area in his building when the other MD left. Then we traveled about 40 miles.
He was diagnosed when he was in 1st grade and 3rd grade is when the vision began to deteriorate quickly. Within a weeks time in fact. The opthalmologist was skeptical on the phone when I told him how much it had decreased since the week before but agreed to see us that day. He was very surprised when he examined him and that's when we started getting the remicade approved with our insurance.
Yes, he's been off steroid drops for quite a while. He does take drops for glaucoma though. Cosopt and alphagan.
And, no, you absolutely are not crazy for asking all these questions. You will find differences and similarities with many people on this site.
Drew was one of the first to receive remicade and there are more and more people on this site starting and having success with this drug.
Good luck- I'll be thinking about you both! I know there were times when Drew handled things better than I did!
I just read all about Drew and the rash. How is he doing now? He and Rebekah are the same age. Bekah will be 12 in November. I am in mid west too...Where are you treating? The doctors say it is okay for him to wear contacts?
From the time from when Drew was diagnosed to when he started the remicade did he ever go into medicated remission with any of the other meds he was on, or did he have constant inflamation?
Thank you for listening...It is nice to have this site and be able to share with people who are going thru something similar.
Jared actually tried a lot of different medications before being put on Remicade. He used methotrexate, cyclosporin and imuran together, leukeran, zenepax, and finally remicade. A few of the other medications helped a little bit but remicade was finally able to quiet him completely without steroids. I think that most kids (at least I hope most kids) are able to get quiet a little sooner and without so many medications, but Jared's body just doesn't want to give this thing up for some reason.
We live in New Mexico and we only have to travel about 20 minutes downtown to the University of New Mexico Hospital to get his infusion. We have a wonderful rheumatologist that oversees his medications here.
Jared has tolerated everything really well, they just have not worked for his inflammation. The remicade works great but the downside is that we have to spend 4 to 5 hours at the hospital each month getting it done. The infusion runs for three hours but by the time the premedication, waiting for nurses, etc. it does take a while. I am not complaining though, I would spend a week there if it got him quiet.
Hang in there, they will find the medication that works for Rebekah.
We have only been dealing with this for about 18 months. It seems every time we try something new it works for a short period of time and then slowly starts creeping back. It is such a viscious cycle. Moving on to the next thing makes me so nervous. As much as I try to deal with this crap on a daily basis, deep down inside I worry about side effects and her future. Am I making the right decisions???????? My heart is just in pieces tonight.
Re: Step after MTX...Remicade?
Rash finally went away after 8 weeks but they rheum till thinks it's related to remicade which is why we stopped.
Drew will be 12 in Dec. We go to Barnes Retina in St Louis. We live in Ill almost on the indiana border- we're about 20 miles from indiana.
Dr Rao said he wasn't against a kid with uveitis getting contacts but was hesitant with an 11 year old. Since Drew has always been so mature with everything else, he gave us the Ok to get them. We've struggled all summer because everytime the rash flared, he had conjunctivitis. So, he just got the go ahead today to order real contacts and get out of the trials!
We should get the kids together sometime- Drew would love to meet another child with uveitis.
How long has Rebekah been diagnosed? Drew tried steroid drops, oral steroids (which always worked but we couldn't keep him on them long term) and mtx before starting remicade. mtx alone did not work.
I think I answered everything! It's so nice talking to you!
I remember many nights like that- My kids do well under most circumstances but if they see my cry, they lose it! So, we would go to an appointment and get bad news- again, and I would hold it in all day. Once everyone was in bed, I would literally cry until I had no tears left.
Just keep in mind that we're here for you and think about all the successes that are on here. There is hope for this disease and promising futures for our kids!
We have been going through this for about 7 or 8 years now and it is still hard to deal with sometimes. I don't ever cry in front of jared either, and I think that is why he is so brave. I do worry about the side effects of all the medications, but I can only worry about one thing at a time, and right now it is his eyes and stomach (well that is two things! lol). I have had relatives tell me that it would be better for me to let him go blind than to put him on the medications that he is on, but I just can't let that happen as long as there is hope. Jared is 13 years old now and he knows that if he does not take the medications that he would most likely go blind, and that his eyes are very sick even with the medications. I have all the confidence in the world in his doctors, and I follow their directions to the T, we never miss lab appiontments, and I call the minute Jared is sick. So far things have been good.
To make a really long story short, the only regret I have is not going to Boston sooner.
How long was jared being treated before you took him to Boston to see Dr. Foster? I would never rule that out for Rebekah, especially if I thought her care was not up to par.
So far it seems her doctors are pretty closely following the step ladder approach that Dr. Foster follows, the one difference is that her eye specialist does not see all that many children, but he works very closely with her pediatric rheum. It is not unklikely for them to conference call while we are at the appointment. But I would be on my way there tomorrow if I thought he would be able to see something different!
Re: Step after MTX...Remicade?
We took Jared to Boston about two years into his diagnosis of birdshot. We had to really push for the doctor here to give us a referral, because he felt that he could treat Jared just as well. He had very brief periods (2 or 3 months) of no inflammation on a few of the medications, but about two years ago we just made the decision that we would make more frequent trips to Boston. We now go every 3 or 4 months. Jared has a lot of damage to his eyes and his high pressures are probably his biggest problem right now.
Where do you live? We are in Albuquerque, so travel is usually an all-day event for us, but we love it there.
Re: Step after MTX...Remicade?
We live in Northern Indiana near South Bend. I have read a little about birdshot, but am not to familiar with it. Rebekah is just now starting to show cateracts, and some minimal vision changes. Pressures have also been a big problem for her. If she is on steroid drops for too long the pressures get real high (38-40). We have not broke the 40 mark that we know of. As soon as we take her off the steorid the pressure goes down and the inflamation comes up...
Re: Step after MTX...Remicade?
Hi Kristi,
Jared had cataracts removed when he was in 2nd or 3rd grade and used steroid drops for way too long. The doctors here were trying other drugs, but just not moving along fast enough (I think). When we reconsulted with Dr. Foster a couple of years ago, he told us that it was just as bad to have the pressures going up and down. His inflammation was well controlled at the time, but he was now suffering damage from the high pressures. Jared has not had to use steroids for quite a while, but he still has problems with his pressure. I was reading a post that Renee did on your other topic that you had and she is right about the Remicade. The reason that so many other things are tried before the remicade, is that it does not provide a durable remission in most people, so when it is stopped inflammation comes back. Jared also has Crohn's disease so he will likely be on some immunosuppression all his life.
If you ever need anything Kristi just let me know. You can also e-mail me offline at asalcido@comcast.net.
Tricia
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