When to see a specialist

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jack_mac
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When to see a specialist

Post by jack_mac » Sun Jun 14, 2009 3:54 pm

Mike,

I'm six weeks into my first ever Iritis attack. The eye is slowly getting better and I'm down to just 3 drops of Pred Forte a day, and beginning to taper down the oral Prednisone. So far I've had seven visits with my ophthalmologist.

I also have numerous autoimmune-type conditions, including Guillain-Barre, Raynaud’s, Pleurisy, Psoriasis/Eczema, anemia, and most likely RA. My GP ordered a lot blood tests, X-rays, etc. No diagnosis yet, perhaps Sarcoidosis. He referred me to a local rheumatologist and I have my first appt this week.

Like many middle-aged men, I've neglected my health for years and avoided seeing doctors. I've mostly just suffered with these various autoimmune conditions, but now that it's beginning to attack vital organs, I've been shocked into action and I want to be as pro-active as possible in managing this going forward, including getting the best possible medical advice. You recommended three Uveitis specialists in my general area (Dr Chu, Dr Samson, Dr Nguyen), but I have no experience dealing with healthcare specialists, and I'm not sure how to proceed.

Specifically, when is the appropriate time to see one of these uber-specialists? Since I don't have a diagnosis yet, and given that the Iritis symptoms are subsiding and may be completely gone by the time I'm actually able to get an appt, does it make sense to go to a specialist at this point, or should I wait until (when/if) my next Iritis attack occurs? I mean, if the symptoms clear up, there may not be anything for him to look at, or treatments to recommend, etc. Should I at least wait until my rheumatologist is able to get further along in the diagnostic process?

I'm a bit at sea here, so any advice you can give is appreciated.

Thanks again for all you do here at this site.

Jack

Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Sun Jun 14, 2009 5:44 pm

Jack,
if it were me, I'd make the appointment now. your uveitis could return within a day or two of stopping the steroids and something else would be needed to stop your autoimmune disease from kicking it off again. the sooner you do something about your underlying stuff the better the long term outcome for it as well as your eyes.
methotrexate or cellcept along with a biological such as remicade or humira might stop this in it's tracks before you have major complications to the eye and internal organs but tests will need to be done to make sure you are healthy enough to undergo such treatment.
often the ocular immunologist can figure out what the underlying disease process is. it sounds like you may have Mixed connective tissue disease or multiple auto immune disease with uveitis. with these things the cilary body is most often inflammed as well as the iris so it is iridocylclitis and systemic treament is needed, more than just the oral steroids.
Sarcoid related uveitis is granulomatus in nature and it also attacks the Lacrimal gland. if it is sarcoidosis, then methotrexate can kick butt. methotrexate can help with psoriatic arthritis related uveitis too.
if the lungs are involved an close section gallium scan is the best way to see the lesions even in the earliest stages of the disease.
there are new drugs coming out in the next few years that will treat this directly through the IL 17 antagonist meds. other drugs such as Luveniq should become available within the next six months and they work wonders with some forms of uveitis especially if you should develop posterior uveitis or intermediate uveitis before severe damage occurs with the retina from Cystoid Macular edema or vascularization of the retina or involvement in the choroid below the maula.


I hope this helps,
Mike
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jack_mac
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Re: When to see a specialist

Post by jack_mac » Tue Jun 23, 2009 7:58 pm

Mike -

I have a appt with my Primary Care Doc this week. I'm going to get a referral to one of the OID specialists you recommended:

-Dr Nguyen at Hopkins
-Dr Chu in NJ
-Dr Samson in NYC

Is there any reason to choose one over the other, or just go with the one who is closest (Dr Chu).

My local Rheumatologist is still testing, but it looks like I have a pretty complicated mix of underlying autoimmune symptoms: Guillain-Barre, Raynaud’s, pleurisy, psoriasis, anemia, IBS-like symtoms (perhaps celiac), some kind of arthritis - perhaps RA, or PsA w/spinal and sacro-illiac involvement (psoriatic spondylitis?)

So do you think all this makes a difference in selecting an OID specialist? I know the ones you recommended are all well trained experts in treating Uveitis, but are there some that are also better trained in handling the diagnosis / treatment / management of the underlying systemic autoimmune diseases? A sort of "one stop shopping" approach. I'd even be willing to go up to MERSI if you thought CSF was best equipped to handle my situation.

Thanks again for all your help.

Jack

Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Tue Jun 23, 2009 8:22 pm

Tough question. I've had fantastic feedback on all of them. Dr Nguyen is a retina specialist as well as an ocular immunologist. I know a lady who went to Dr Chu years ago who finally got diagnosed with Lupus after many otehrs shook her off. Dr Samson is also good.
if Chu is the closest, go to him. you can always go to CSF in the future as it is a LONG trip every six weeks to see him.

if you want an expedited appointment with Dr Quan Nguyen, use my name and iritis.org and he will make it happen through email to him. I haven't interacted with dr chu or samson in many years now.
if you decide to see CSF, use my name for an expedited appointment too.

many of your symptoms can be directly linked to the enteropathic arthropathies through HLA B27 or IL23R or ARTS1 genes. HLA cw6 is often linked to psoriasis as well. HLA B8 is linked to systemic lupus erythematosus. you have allot going on and you may have other markers for connective tissue disease processes that should be checked for as well.
the spondyloarthropathies can be all interconnected so you can sometimes end up with GI, Skin and arthritis. usually psoriatic arthritis attacks the index finger first causing sausage digit. it can cause bamboo spine just like Akylosing spondylitis as well .
I have a friend with psoriatic arthritis who has responded well to both Remicade and now to Humira (injected vs infused). there is a new injectible form of remicade under study right now but manufacturing problems because of agreements is a problem because drug company mergers.

If you were in Canada I'd suggest you ask for STELARA a new IL17 blocking drug available there for psoriasis. or in Europe.

Wish you the best,
Mike
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jack_mac
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Re: When to see a specialist

Post by jack_mac » Tue Jun 23, 2009 10:03 pm

Mike -

Thanks for the quick reply.

A couple of follow-ups:

1) I'll go with Dr. Chu in Newark, unless it proves too hard to get an appt, in which case I'll try Dr. Nguyen. I want to get the ball rolling - I'm already 7 weeks into this attack and the more I read up on Uveitis, the more I understand how potentially serious this condition is. I want to get off these steroids and on to something that starts treating the underlying symptoms.

2) Being on the Prednisone has been a revelation - all manner of aches, pains, stiffness, rashes, GI discomfort, etc etc have miraculously disappeared. I haven't felt this good in at least 10-15 years, maybe longer. I'd forgotten what it's like to be pain free. And I don't want to go back - I want to find some treatment that works for me. But even now, as I taper down the Prednisone (I'm down to 20mg), all those old aches & pains and various symptoms are coming back.

3) You keep mentioning all these gene markers: HLA B27 - IL23R - ARTS1 - HLA cw6 - HLA B8 - IL 17
Should I be pushing to get tested for these? My Eye Doc has ordered a ton of tests, but as I go thru the results I've gotten back so far, I don't see any DNA tests, although I'm pretty sure he at least ordered an HLA B27.

4) I've only had one appt so far with my local Rheum and he jumped on PsA pretty quickly after looking at some X-Rays he took, but I don't have those sausage digits you describe. I was surprised and frankly pretty disappointed with how quick he was to settle on PsA (pending some additional tests he's ordered). I was prepared for a long and frustrating diagnostic process, and he was done with me in about 10 minutes.

5) As far as treatments, he seems to favor Simponi (Golimumab) or perhaps Humira. I asked about Remicade, but he thought I'd be better off with injections over infusions. (Currently I don't have prescription drug coverage, but my insurance will cover 100% of Remicade in-office infusions, so it's a huge issue for me). Also, I've been reading a lot over at the Ask Dr Foster forums and CSF seems to be recommending Remicade as the gold standard, over Simponi and Humira, which he calls untested me-too drugs, at least with respect to treating Uveitis with RA, PsA & AS. link: http://tinyurl.com/Golimumab

Any thoughts or comments would be appreciated.

Thanks for all you do here and on the other forums.

Jack

Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Wed Jun 24, 2009 9:27 am

Remicade seems to work the best with uveitis. the others work well for just psoriasis or psoriatic arthritis and other things like Crohn's and ulcerative colitis.
Dr Foster has the most experience with all of this stuff as he started with Methotrexate and cyclosporine to treat uveitis over 30 years ago and the other doctors followed suit.
but, it all depends on side effects that might show up as to what drug YOU will require to accomplish the goal of off all steroids without inflammation.
depending on your income, the drug manufacturers will supply some of these drugs at a lower cost. usually one starts off with DMARD drugs first and then moves to the biologicals in conjunction with them such as MTX or cellcept (now available as a generic) along with the Biological such as remicade or Humira.
I gave you the genes related to psoriasis and ankylosing spondylits as well as cytokines present in inflammation for your information so that should the doctors mention them, you would know what they are talking about. the treatment is the same, often trial and error because none of us respond the same way to them. I wish the state of the art was more definitive and that a profile of our genes would indicate the type and quantity of medications could be found before starting any of them but that just isn't possible and would be not be affordable.

DR Chu is a very good ocular immunologist and studied under DR Foster at Harvard and MEEI.

DR Nguyen did as well and has done allot of research and is constantly doing drug trials.
I have sent several of our members to him and they have had a very positive experience with him.

wish you the very best,
Mike
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Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Wed Jun 24, 2009 9:38 am

I think I would get the appointment with DR Chu or Dr Nguyen and see what they suggest as to meds. the biologicals alone will NOT conquer the beast, only control it.
it seems that many people tolerate Cellcept better than Methotrexate as the DMARD drug but many people have no side effects at all. other's have a terrible time with MTX. MTX can be injected requiring a smaller dose with the same results but fewer side effects of nausea etc.
monitoring for liver and kidney function and if the numbers start climbing then withdrawl of the med returns the numbers back to normal limits with them.
sometimes the NSAID celebrex stops the inflammation for many people as well.

Wish you the best,
Mike
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jack_mac
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Re: When to see a specialist

Post by jack_mac » Thu Jun 25, 2009 3:23 pm

Mike,

I'm trying to get a referral from my eye doc, but the earliest appt I can get is July 10th. Then my HMO has an approval process for out-of-network referrals which they tell me can take as long as 15 business days. So it's possible I won't have an approved referral until late July, at which point I will then have to try to get on Dr Chu's calendar.

My concern is that if I wait to schedule the appt with Dr Chu (or Dr Nguyen) until I have the referral, I may not be able to get in to see him until late Aug or Sept.

Is it OK to schedule an appt with one of these OID specialists before actually getting the referral, or are they going to want some proof of referral before scheduling? Or do they not really care about the referral - is that just something between me and my insurance company?

Sorry for the dumb questions, I just don't have any experience navigating our crazy health system.

As always, thanks.

Jack

Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Thu Jun 25, 2009 7:10 pm

Each insurance company addresses out of network appointments differently. some have no problems at all. some people have had to write multiple page letters to GOD to get appointments approved literally taking months.
some pay out of pocket to see a specialist, then return to their opthalmologists for the local person to order tests or to prescribe the meds.
often this costs about 500 dollars or more and tests can be very expensive.
They then return to see the specialist every six weeks or so initially or while in a flare up of the uveitis. this is done to monitor drugs and changes inside the eye indicate what meds often need to be adjusted up or down etc.

So an appointment in August would be reasonable if you can get it accomplished.

I wish we had a single payer system so that you could go anywhere for care.

wish you the best,
Mike
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Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Thu Jun 25, 2009 7:18 pm

you asked Dr Foster if Gum Disease could be related and the answer is maybe.
recently the IL17 cytokine has been linked to gum disease and if this type of inflammation is found there, then it could spread from the gums through the blood to the eye. this cytokine is present in Psoriasis as well as ankylosing spondylitis, Crohn's and ulcerative colitis. it is found inside the eye with uveitis as well. which came first, the psoriasis, the arthritis or the gum disease? interesting subject. if you need the article on IL17 and gum disease it is in the related conditions forum if I recall correctly or I can get it and post the link for you.

wish you the best
mike
Mike Bartolatz
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Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Thu Jun 25, 2009 7:20 pm

http://jdr.sagepub.com/cgi/content/abstract/87/9/817

IL17 in periodontal disease, very new research that many doctors might NOT be aware of.

mike
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jack_mac
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Any reason to start with monotherapy?

Post by jack_mac » Tue Jul 07, 2009 6:09 pm

Mike,

My Dx is PsA with spondylosis, sacroiliitis, enthesitis & uveitis. [Although it could also be AS]. The uveitis is new, but I’ve had the other symptoms [arthritis, psoriasis, Raynaud’s, Guillian-Barre, IBS, etc] for at least 10-15 years.

My Rheumatologist is going to start me on a monotherapy of Remicade - 5mg/kg at 8 week intervals (after the initial 3 infusions). I asked about combo therapy with MTX or Cellcept, but he was pretty dismissive of that idea. You wrote in an earlier message: "the biologicals alone will NOT conquer the beast, only control it."

I know there is no “typical” treatment, but does 5mg of Remicade monotherapy at 8 week intervals sound like a typical starting point? Everything I read seems to suggest that CSF strongly believes combination therapy to be superior to monotherapy, and that you should start out with a 4 week frequency, not 8 weeks. Eventually you stretch the infusions to 6, then 8, then 10 and finally 12 weeks, at which point you can stop, provided there is no flare up.

Given my Dx and long history of symptoms, is there any reason not to aggressively treat? Any reason to start with monotherapy and “see how things progress”? Any reason to start with such a low dose and infrequent infusions? [When I suggested that my symptoms seem to fit more with AS than PsA, one of the reasons he gave for the PsA Dx was that a Dx of AS would require him to start with a higher dosage of Remicade].

I mean, is there a downside to starting out more aggressively? I’d rather start out aggressively and scale back, then to begin cautiously and have to suffer thru months and months of slowly expanding the treatment.

FYI - I have an appt to see Dr Chu in Newark in 6 weeks. Is this something he will easily be able to adjust (ie, add MTX, and increase the Remicade), or is it a big deal to alter the treatment once you start?

Thanks again,

Jack

Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Tue Jul 07, 2009 6:35 pm

Jack,
you have feedback from the BEST uveitis specialist in the World who just happens to be a BOARD CERTIFIED RHEUMATOLOGIST as well, DR C Stephen Foster. He has Litteraly written the Book on Uveitis treatment as well as the underlying diseases associated with uveitis which includes everything you have.
Dr Chu Studied under Dr Foster. He is superb.

fire the local rheumatologist, see Dr Chu and let him prescribe meds.

wish you the very best,
Mike
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jack_mac
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It's complicated

Post by jack_mac » Tue Jul 07, 2009 8:52 pm

Mike

You’re right. I should just turn my treatment over to CSF, or one of the Docs he trained.

Unfortunately it’s not that simple. My insurance will probably cover me to get some consults from Dr Chu [although I still haven’t gotten the authorization yet], but never as my primary Rheumy.

And they denied me for Remicade. Their policy requires me to first exhaust every other therapy, which will take at least 6mos. My local Rheumy is helping me fight the insurance company, and he assures me he will get them to authorize Remicade. So you see, I can’t fire my local Rheumy, I need him on my side, at least for the time being.

I’m new to navigating this health care maze, and I have to figure out when to push back, when to pick my battles, etc. I’m trying to get a sense of whether this MTX combo issue is something I should push back on and insist that my local Rheumy change immediately, or if it's OK to wait six weeks until I have a chance to see Dr Chu, and allow Dr Chu to work with my local Rheumy to adjust the treatment. Or if I should try to get into Dr Chu ASAP, so he can get the treatment adjusted before I ever even start. That may be the route I take.

Mike, thanks for all your help. I can’t tell you what it means knowing I have access to literally the top Uveitis specialist in the world. It’s just unbelievable. I’ve got a lot going on right now, but at least I can rest assured that no matter what happens, thanks to CSF and you, I will have had the benefit of the best, most proven, most cutting-edge treatments available.

Take care.

Jack

Mike Bartolatz
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Re: When to see a specialist

Post by Mike Bartolatz » Wed Jul 08, 2009 8:53 am

Methotrexate is the first DMARD to be tried: it is cheap and it often works for HLA B27 related autoimmune diseases. it most often has to be given at a higher dose than the arthritis specialists are accustomed using. if given by injection, less is required to get the job done. you do the injection like that of a diabetic using insulin. often an NSAID is given with it to control uveitis such as celebrex, naprosyn, indomethacin ER.
if you can't tolerate MTX, then cellcept is tried along with the NSAID. if that doesn't work then MTX is given along with the Remicade at 4 week intervals.
the eye is the ONLY organ that a doctor can look into to see effects of drugs. so an opthalmologist has to be involved in care. the rheumatologist has to adjust the amount of meds accordingly. one also has to remain on the drug for TWO YEARS in order to retrain the immune system to stop attacking the eye(s). off all streroids without inflammation of the eye during this two year period. then a slow taper off of the drugs is tried.

I hope that a single payer health care system is initiated in this country soon. this 'out of area' crap is for the birds.
there are only about 100 uveitis specialists in the World and the odds of one being close is very low or on ones plan.

Wish you the best,
Mike
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