chronic uveitis and JRA and psoriasis

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rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

Re: chronic uveitis and JRA and psoriasis

Post by rtaunton »

Hi again, Kevin helped me sort out my log in issues. Dr. Foster will work with any Dr. All he asks is that the patient will travel to see him so that he can diagnose properly. When we went to him in 2004 for an evaluation the appointment took almost 5 hours. At the end of the appointment he told me what he found, which was horrible, and gave me hope with a plan A, B and even C that could be followed. If I chose to follow his recommendations then I had another set of options that I needed to decide on which was: to find another Dr. to follow his recommendations through prescribing and consulting, or to keep him as the main Dr. We chose the latter which entailed flying to see him every 6 weeks, until she was upgraded to every 3 months, and at this point we see him twice a year. We were thinking of working with a Dr. via long distance from Utah, but the Dr. wasn't up for that kind of a patient relationship.

Why Dr. Foster is so special is because he is a Rheumatologist, an ophthalmologist, cornea specialist and an immunologist. It is seriously a one stop shop experience. That is why I chose him. We had two years of running around to seperate specialists, while her arthritis was being dealt with for the most part, but her vision was going downhill fast. He will work with any Dr., however, so maybe he already has a working relationship with an eye Dr. from your area, I don't really know. Some people choose to have Dr. Foster as a guide only, and visit him once a year so that he can consult their Dr. at home on how to treat. My other problem with that was that my daughter was so far gone by the time we got her there, I wanted to remove the middle man all together.

I just wanted you to know how passionate he is. It took my daughter 6 - 8 months to find the right medicine for her, then even longer to find the right dose. What is tricky about treating children is the rate at which they are growing. If you don't have a Dr. that is used to prescribing these types of meds, they completely miss the mark with what is considered adequate dosing. We have a hematologist at home that prescribed the medicine that Dr. Foster suggested. It ended up being ivig infusions. I did have to bring in another Dr. as my daughter failed many meds. The hematologist was so excited to work with Dr. Foster that it was a working relationship that I dreamed about. I made sure they communicated. This allowed our trips to Boston to be more spread out. Her infusions were not perfect, though, because of errors that were made. You probably guessed, but the dosing was wrong. Before each infusion they began to weigh her and prescribe accordingly. Her infusions began at only 2 1/2 hours per 3 days, but ended up being 5 hours per 5 days every 4 weeks. A major pain, but she is off all meds now. I take that back, she takes xibrom drops (once per day) to help with pain and keeping cystoid macular edema at bay. It is a NSAID. No steroids, however, nadda.

I am not using the word cured, yet. I am using the term durable remission. It was his recipe that we followed. I would go to any Dr. that studied under him, but I would also be sure that Dr. Foster had his hand in it as well. He brought me peace of mind, still does. I can write him anytime, and he will answer me within 24 hours. That kind of passion is heart warming. It feels good to have him on our side. Whatever you decide to do, I just wanted you to know what he has done for my daughter.

I remember when we thought my daughters rash was psoriasis. He wanted her checked out at home by a dermatologist because he said it would change the medicine that was being prescribed. So, I guess it does make a difference in that respect.

Anything I can do to help or talk over, let me know.
Renee'
Renee'
Oregon
ccrawfor8645
Posts: 22
Joined: Fri Dec 05, 2008 8:32 pm

Re: chronic uveitis and JRA and psoriasis

Post by ccrawfor8645 »

What medicines did finally work for your daughter? Did she try Zenapax? Do you have Dr. Foster's email address or anything that I could use to get in touch with him and possibly an email address for Dr. Nguyen? I took my dauger for a second opinion yester to another eye specialist that has cured adult uveitis. His exam shows that her eye inflammation went down some since her last infusion 1 1/2 weeks ago with a higher dose of Zenapax. She only saw her current eye specialst only 2 days after that infusion. Her next eye appointment with her current eye specialist is next Monday. I would really like to keep trying Zenapax and not go back to Remicade that may have given her current kidney inflammation problem. They say not but I have that gut feeling and am usually right when I get those feelings. It has been known for kidney inflammation to occur for Remicade in adults, it probably can occur in kids also. After Remicade for almost 2 years, my daughter was quite close to the top of the dosage she could get based on her weight.

I just told her pediatric rheumatologist about the 2nd opinion visit today and that I am going for a 3rd with DR. Nguyen in Maryland. Her 2nd opinion eye specialist is making phone calls to Philadelphia and Maryland for me.

Concerned mom
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: chronic uveitis and JRA and psoriasis

Post by Mike Bartolatz »

both doctor foster and dr nguyens contact information can be found at http://www.uveitis.org (dr Foster's website)
their email addresses are there as well.
once at his site, click on PATIENT information just below the header as a hotlink.
on the left side of the patient information webpage there is a series of hotlinks in RED, click on specialist list, then Maryland for dr Nguyen and MASS. for dr Foster. DR foster also has an ASK DR FOSTER site as well as the Uveitis ONline support group where Renee' is also a moderator, I teach about this stuff in a forum there as well and I also help with the Pars planitis Forum.

because of the link to psoriasis, zenepax is probably a getter choice since it targets TH 17 whereas remicade targets TNF A
cyclosporine might need to be added to ensure it works but I'm not a doctor.
Remicade is made from mouse antibodies whereas humira is from human antibodies by the way so some feel side effects are less likely with with the human antibodies. both are TNF A inhibitors.

http://www.uveitis.org/patient/specialists/default.html
here is the direct link to the specialist list

mike
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rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

Re: chronic uveitis and JRA and psoriasis

Post by rtaunton »

The meds that she tried and failed were: Methotrexate, combo Methotrexate and cyclosporin, Cellcept and cyclosporin, Chlorambucil and finally IvIg. After failing chlorambucil, Dr. Foster gave 3 choices of meds which were presented to my insurance; Zenepax, Remicade and ivig. I was going to have a fight on my hands with either Zenepax or Remicade because of the "newness" of them. Ivig has been around for a very long time, and my insurance o.k'd it right on the spot.

I'm happy you have an appt. with Dr. Nguyen. I've read some wonderful things about him through the years.

Renee'
Renee'
Oregon
Mike Bartolatz
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Re: chronic uveitis and JRA and psoriasis

Post by Mike Bartolatz »

http://emedicine.medscape.com/article/1209403-overview

anterior uveitis in childhood, doesn't mention many causes nor does it go in treatment but it helps differentiate various types of childhood uveitis in a relatively easy to understand way.

mike
Mike Bartolatz
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ccrawfor8645
Posts: 22
Joined: Fri Dec 05, 2008 8:32 pm

Re: chronic uveitis and JRA and psoriasis

Post by ccrawfor8645 »

Renee,

Is the IVIG what finally resolved your daughter's chronic ueitis? Her pediatric rheumatologist did not want to try chlorambucil as it is a very harmful chemo drug.

We saw Dr. Nguyen this week in Maryland. He said that my daughter's eyes vision is still 20/20 at vision. There is some damage though as her eye inflammation has been high for about 4 weeks now. She has anterior iritis in the front and just a little in the middle. He wanted to try Cellcept but she already tried that with severe night mares and sleep walking. The only options he said available were: higher dosage of Zenapax, back to Remicade and steroid eye implants. Do you know anything about this? He said side affects were cataracts and eye pressure. Both of which he said could be controlled medically and would reduce the chance of harm to other organs. He said he considers the whole body in the treatment plan.

My husband and I said that we really don't want to go the Remicade route. So, Dr. Nguyen called her ped rheumy out of his office clinic appointment while we were there to discuss her treatment plan. Her ped rheumy also did not want to try the Remicade drug category. They decided to give Zenapax another try and up the dosage since there was room for more dosage for her weight. She was currently on 4 mg/kilo and can go up to 10 mg/kilo. They are going to try 6 mg/kilo 2 weeks apart and then she goes back to Dr. Nguyen for another appointment. We are to give her eye steroid drops 4x/say for a short time. She is to see her regular eye specialist for eye pressure. We have a movie to watch about the steroid eye implants. He said that the steroid eye implants work for 2.5 years. He did not mention IVIG treatments.

It was not suggested to use Zenapax with cyclosporin.
ccrawfor8645
Posts: 22
Joined: Fri Dec 05, 2008 8:32 pm

Re: chronic uveitis and JRA and psoriasis

Post by ccrawfor8645 »

Renee,

Is the IVIG what finally resolved your daughter's chronic ueitis? Her pediatric rheumatologist did not want to try chlorambucil as it is a very harmful chemo drug.

We saw Dr. Nguyen this week in Maryland. He said that my daughter's eyes vision is still 20/20 at vision. There is some damage though as her eye inflammation has been high for about 4 weeks now. She has anterior iritis in the front and just a little in the middle. He wanted to try Cellcept but she already tried that with severe night mares and sleep walking. The only options he said available were: higher dosage of Zenapax, back to Remicade and steroid eye implants. Do you know anything about this? He said side affects were cataracts and eye pressure. Both of which he said could be controlled medically and would reduce the chance of harm to other organs. He said he considers the whole body in the treatment plan.

My husband and I said that we really don't want to go the Remicade route. So, Dr. Nguyen called her ped rheumy out of his office clinic appointment while we were there to discuss her treatment plan. Her ped rheumy also did not want to try the Remicade drug category. They decided to give Zenapax another try and up the dosage since there was room for more dosage for her weight. She was currently on 4 mg/kilo and can go up to 10 mg/kilo. They are going to try 6 mg/kilo 2 weeks apart and then she goes back to Dr. Nguyen for another appointment. We are to give her eye steroid drops 4x/say for a short time. She is to see her regular eye specialist for eye pressure. We have a movie to watch about the steroid eye implants. He said that the steroid eye implants work for 2.5 years. He did not mention IVIG treatments.

It was not suggested to use Zenapax with cyclosporin.
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: chronic uveitis and JRA and psoriasis

Post by Mike Bartolatz »

as long as you are willing to cope with cataract and glaucoma consequences to the steroid implant it does work. for me I wouldn't consider it as I had a steroid only treatment regimen and I ended up with cataracts and glaucoma which destroyed my peripheral vision, allowed epiretinal membranes and Cystoid Macular Edema to develop too. I had iridocyclitis and pars planitis which are very difficult to control in some people
you had indicated that the Zenepax was working so maybe that would be the way to go.

wish you a wonderful Holiday Season,
mike
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ccrawfor8645
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Re: chronic uveitis and JRA and psoriasis

Post by ccrawfor8645 »

The eye steroid implants was the last resort. We are going to try the Zenapax first. I am not hoping to go back to Remicade. I hope that Renee will answer also to find out that the last drug(s) that got her daugher cured were. Not many options were given to us. I thought we were hopeful but after thinking about it, I am not sure what to think now. I am wandering what Dr. Foster would say. Would it be OK to ask Dr. Nguyen to consult with Dr. Foster and find out what he says?

We really like Dr. Nguyen. We first one of his associates, Dr. Wilker, who did a pretty thorough eye exam. Then we saw Dr. Nguyen who did the same thing. We must have been with him for about an hour or so. He ordered a lot of blood tests and a urine test . He even called her ped rheumy to talk about her treatment plan. He tried to talk to her ped eye specialist but he was not in the office. That would have been an interesting to hear that conversation.

I have to really have positive thinking now and hope that I made the right choice to take her to Dr. Nguyen.
Mike Bartolatz
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Re: chronic uveitis and JRA and psoriasis

Post by Mike Bartolatz »

if there is something that needs doctor Foster's attention, I am sure that he would be willing to look at records from dr Nguyen and give advice. your daughter has a pretty serious case of uveitis related to her underlying autoimmune diseases which can be very difficult to control and to also get her to remission. I know that Renee and Alexa could respond to your daughter, if you would like, email me at oldefart@hotmail.com and I'll then send you her private email address,
her daughter is a very special girl. over the past few years I have traveled to central Oregon to see her and her family as well as others here in the Pacific Northwest. Renee is also a very special lady. you would like her if you could meet her.
should you need to go to Boston to see Dr Foster, there is a support group there. one of the members, Glenn is the father of a girl with JRA related uveitis whom doctor foster successfully treated and got to remission. he lives there in south eastern PA. he too is a moderator at the parent's forum. the key is early intervention in JIA related uveitis, within the first three years in order to avoid allot of the more powerful drugs that can cause systemic problems. most individuals get to the TRUE specialists more than three years down the road making intervention much more difficult.

I'll email Renee to answer your questions. I know that she was sick earlier in the week and she hasn't posted to the http://www.uosg.org parent's site

wish you and your family the very best,
Mike
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rtaunton
Posts: 40
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Re: chronic uveitis and JRA and psoriasis

Post by rtaunton »

There are options out there. Yes, Ivig was what got my daughter into durable remission. Cellcept with cyclosporin got her eyes quiet, and so did chlorambucil, but she couldn't stay on them due to pnuemonia. Ivig actually helped her to stay healthy. It is a last resort med, and also a major pain in the butt to be on. It literally feels endless. All of these meds have risks that need to be weighed, but what made me feel better about the whole situation was the frequent labs that were taken. That and having someone monitor her who is use to dealing with these types of meds. Chlorambucil is an amazing med, but I wouldn't let my daughter take it now that she is older. At a younger age (before puberty), careful monitoring and only a year of being on it, chlorambucil can be an amazing med. Most meds take two years to work (steroid and inflammation free) before tapering. Chlorambucil is only a year. My daughter was on ivig for 4 years, but thankfully it worked.

I have to be honest, I would try everything before heading down a steroid road of any kind, including an implant. My advice would be to do anything you can to get the peace of mind that you are looking for. Being able to communicate with your Dr. is very important. Write everything down before you even go into the clinic. If his or her answers leave you more confused, then move on. My hope is that the Dr. will give you a clear plan to follow with 2 or 3 back ups just in case the first one fails.

Hope this helps,
Renee'

Mike, I think we were posting about the same time lol
Renee'
Oregon
ccrawfor8645
Posts: 22
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Re: chronic uveitis and JRA and psoriasis

Post by ccrawfor8645 »

We did see Dr. Nguyen on 12/18/2008. He had only given 3 options: higher dosage of Zenapax, go back to Remicade, and eye steroid implants - Retisert. We were to also go back and give oral steroid drops 4x/day - predforte until we go back to see him. We opted for the Zenapax higher dosage. She is still also taking the oral prednisone each day for her kidney inflammation that does not seem to be helping to reduce the eye inflammation though. We went for a 2 week follow-up with her local eye specialist. Her eye pressure started to go up and now we have to give in addition a eye pressure drop 2x/day - alfpghan. But, her eye inflammation did go down a little. Not sure if it was from the predforte eye drops or the higher dosage of Zenapax. Dr. Nguyen said she could have Zenapax 2 weeks apart on short interim but her local rheumatologist won't give it 2 weeks, only 4 weeks.

I have tried to contact Dr. Nguyen by phone 3 times and only got a response from his associates with no success. I also have emailed Dr. Nguyen with no answer at all. The last time I called, I asked to page Dr. Nguyen and still got an associate. That associate said finally that the dictated notes said Zenapax could be given 2 weeks apart and he would email Dr. Nguyen to contact her rheumy and me. That was last Friday and still have not heard anything. I am starting to get concerned that Dr. Nguyen has not been getting the information even though he is only in the clinic Tuesday's andThursday's. If he is so concerned like he was when we met him, I am wandering if he really don't. I know he is very busy but really, no acknowledgement at all! I am about ready to contact Dr. Foster in Boston, MA. But, I figured I had better give Dr. Nguyen a little more time and a chance.

I did contact a person from PA that is kind of in my area. He has totally different condition than my daughter.

I have seen the Retisert patient video. It did not really give any more info than I already knew. I went to their web site and saw the surgeon's video. Wow! A lot more information. But, I am really concerned about this option as it does not really mention anterior uveitis, just posterior uveitis. I also Googled on anterior uveitis and did not find much either. I am starting to get really concerned now for my daughter. I wish Dr. Nguyen would call me or email me back. I think I will call him tomorrow when he is in the office and see if I can get a response. I also will ask him to share his notes with Dr. Foster for another consult. If not, I may just end up going up there to see him.

On our visit with Dr. Nguyen, there was no mention of adding cyclosporine as a mix with her drugs now. He wanted to do Cellcept and some other drugs. But we can't use Cellcept as it causes severe night mares and sleep walking with my daughter. As soon as she was off the drug, they want away. Same with azathioprine. There was no mention of using IVIG or chlorambucil (spelling??). Her rheumy said he has used IVIG without success and also uses chlorambucil as a very last resort as it is a very potent chemo drug. He has mentioned about another patient seeing Dr. Foster. But everytime I ask her rheumy about other patients with conditions like my dauughter, he says no. I know that HIPAA law prevents about giving names out but thought that he could say he has other patient(s) that he has tried other things. I found if I asked the right question in such a way, I do get some answers though.

I am getting really concerned now about our options and want to pursue homeopathic remedies also like herbs too. We have started to eat anti-inflammatory foods again on a regular basis like berries, watermelon, kiwi, sweet potatoes.

I am about to email Dr. Foster and see what results I get.

Any suggestions?

concerned mom
Mike Bartolatz
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Re: chronic uveitis and JRA and psoriasis

Post by Mike Bartolatz »

I don't know what DR Nguyen is doing but you have to remember that doctors often take a vacation this time of year and that might be why you haven't had a reply. for example, I know that doctor Foster has been in Utah with his wife for the past week. doctors also go to medical conventions and also do training for new opthalmologists. Dr Nguyen is also a Retina Specialist doing research in that area of opthalmology as well.

hopefully Dr Nguyen will respond soon to your questions.

much of this stuff takes weeks and even months to resolve. everything is trial and error to a great extend. drugs such as chorambucil are used as a LAST resort because of potential problems with growth redardation and damage to the reproductive system. IVIG is VERY costly and scarce as it is made from human blood. it takes ALLOT of blood to make just one dose. I do know people whom have used it with Success. they did have problems with it as well and the manufacturer can make a difference too.

If you do decide to go to see DR Foster, make sure that the appointment is with HIM as he travels aroundthe world teaching and attending conventions and symposiums. the other doctors at MERSI are very competent however but if you want to see DR Foster you will have to indicate this to the staff. if needed, ask to speak to Frances Foster and tell her that Mike Bartolatz has referred you with a very complicated case. she will understand and will make the appointment. indicate your childs kidney status as well.

the problem is that you have to have local doctors willing to implement any plan that the specialist (ocular immunologist) has determined to be appropriate for your child. You might wish to join the support group affiliated with DR Foster at http://www.uosg.org there is a PARENT forum at which GLENN helps to moderate as well as Renee' who has posted to you here. Glenn Lives in southeast part of Penn. and his daughter travels to Boston/Cambridge for followup. Glenn is a Medical Doctor who specializes in dental surgery.
Post a note to him and he will respond.

I hope this helps,
Mike
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ccrawfor8645
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Re: chronic uveitis and JRA and psoriasis

Post by ccrawfor8645 »

It has been awhile since I posted a reply. Dr. Nguyen has put my daughter on higher doses of Zenapax. She was to have 3 IV's, 2 weeks apart. There has been a pattern that I have found. The first 2 iv's have brought her eye inflammation down. Before the 3rd iv, her eye inflammation goes back to where we started again. We have gone through 2 rounds of this. We are going to her local eye specialist to see the results only 1 week after the 2nd round of iv's and 3rd iv infusion today to see if the 3rd iv infusion has worked. If not, back to other treatments.

I talked to Dr. Nguyen last Friday about her latest results after using Zenapax. He mentioned that if the results of today's eye exam are not good, he wants to put her back on Remicade for awhile since it seemed to work before for 3 years before she developed her kidney inflammation. Her local doctors would just have to keep an eye on her kidney inflammation again. It is almost gone after a year. If the kidney inflammation goes back up, it definitely is a sign that the Remicade caused the inflammation. He mentioned using eye injections and another drug that is a skin injection. He mentioned AIN457 and LX211. Does anyone have any ideas what eye injections or the other 2 drugs are?

We go to see Dr. Nguyen next Tuesday. He is being overbooked and is going to work us in since her eye inflammation is back up again. We were supposed to see him the week after that.

Thanks.
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: chronic uveitis and JRA and psoriasis

Post by Mike Bartolatz »

I assume the 'eye injections' means corticoseroid injections to tissue surrounding the eye or on very rare occasions into the eye. if Cystoid macular edema is present there are vascular endothelial growth factor 2 drugs such as Avastin that can be injected into the eye.
LX211 is also known as Luveniq. this is a new drug not yet approved by the FDA but it has EXCELLENT results for posterior and intermediate uveitis. it is made from a molecule in Cyclosporine which is much smaller than the cyclosporine compound making it much more effective. once approved, hopefully this year, it will be the first drug developed solely for uveitis.
I don't know about the other drug that you mention. I'll have to do some research and get back to you.
allot of these 'trial' meds have little out there for us to find out about them on the internet until studies are intiated information published at the National Library of Medicine and in journals.

I hope that your daughter will quickly get this under control and that if she goes back on the Remicade that she won't have kidney problems again.

Thanks for the update,
mike
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