RA and iritis

Post here to exchange iritis general information and support with others.

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RA and iritis

Postby kls33628 » Mon Jul 07, 2008 7:45 pm

All,

I have juvenile rheumatoid arthritis when I was a child - I am now in my late 40's. The disease went into remission in my late teens and didn't return until a couple of years ago. As a child I was RF postive and did NOT have eye disease but had moderate joint disease. I didn't walk for about a year and then used a cane for a few years after that - my knees were the big problem. As an adult, the primary disease initially was iritis in both eyes and I am RF negative. I had 4 bouts of iritis before they got it under control with MTX - that was 12 months ago. In the last year, I have had more trouble with my joints (hands, feet, hips) with no seeming relationship between treatment and flares. Does it get better because the flare is over or because they alter the medication. I seem to flare roughly once every 3 or 4 months for about a month or six weeks. The swelling isn't pleasant but I don't think it is horrendous either - I've certainly seen worse and a prednisone pack is a wonderful thing even if it makes you a bit on edge. After having a wonderful June, I experienced pain behind my ear starting last week. I thought I was getting an ear infection so I called my PCP this morning. I have had a couple of ear and skin infections since starting the MTX and she has handled them all, not my rheumy or my occular immunologist. Anyhow, the long and short of it is that she sent me to an ENT guy to rule out an infection of the mastoid bone and he is telling me that my RA is in my ear. My PCP said she suspected something similar earlier in the day. I am shell shocked - in the ear!!!! I've never heard of this.

Do patients with RA and iritis have a different type of RA - does it manifest itself differently? Has anyone ever heard of this or did the ENT guy just not know how to explain the pain and went to some generic default? I am having a hard time believing this especially since I saw less joint pain and swelling in June than I have seen in 24 months. That said, I have been exhausted this last week as well and a bit worried about what that tiredness might portend. I am currently taking 20mg MTX with leucovorin weekly, folic acid, levoxyl, HCTZ and vitamin D daily. Naprosyn as needed.

It seems like everytime I settle down to living with this disease, something unexpected rocks the boat. My docs are top of the line all the way around especially the eye guy but I am disappointed and frustrated. Thoughts? Anyone else feel like the more doctors they see, the more complicated everything becomes?

K
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Postby Mike Bartolatz » Mon Jul 07, 2008 8:42 pm

K,
often autoimmune disease processes come in bunches and when uveitis occurs in a Juvenile Ideopathic Arthritis patient it can be very difficult to control or prevent from recurring. I have known several members over the years with JRA (NOW JIA) uveitis during adult life who required Remicade or Humira to break the recurrent cycle of the beast. one even took Remicade during pregnancy without complications to the fetus to keep the uveitis at bay.
Rheumatoid arthritis can attack bones anywhere in your body and it can attach the bones of theinner ear as well. one must be careful however to make sure that a pathogen isn't the cause of things dealing with the inner ear.
Cogan's syndrome can appear too and we have several members with this autoimmune disease with uveitis and arthritis.
we also have a member who is almost completely deaf and who has RA and intermediate uveitis.
May I ask who is your ocular immunologist? if it were me with this complication I would contact him/her right away for input on drugs and biologicals if needed.

What skin infections have ocurred and have you indicated this to your ocular immunologist? Dermatological disease, rashes etc can indicate possible additional autoimmune conditons such as connective tissue diseases etc which can also occur in individuals with uveitis. are you ANA positive? PANCA?

I'm not a doctor but your case could easily lead to vision loss with the recurrent nature of your brand of uveitis related to a History of JRA?JIA

Wish you the very best,
Mike
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RA & Iritis

Postby kls33628 » Tue Jul 08, 2008 9:22 am

Mike,

My apologies up front - worlds longest post follows.

ANA positive, speckled pattern but negative for everything else and they ran it all, mostly because of the JRA and Hashimoto's disease.

Originally I was being seen by an opthamologist outside of Boston - I live out in the deep burbs and he was convenient and appeared to know what he was doing. Durnig those days, I saw the eye guy at least once a week and so it wasn't just convenience, I was having a hard time doing my job between appts and the fact that I read and write for living and well seeing wasn't my strong point back then. It took me a while to get a referral to the rheumatologist and in the interim, we tried to taper off the pred forte with no luck and a second flare. My PCP wanted me to see a pariticular rheumatologist, Jonathan Kay, at MGH and Kay preferred that I see his uveitis guy if the iritis flared. What that meant was that for a time, I had two eye guys and well frankly, a million rheumatologists because Kay put me in the clinic and although I saw the same resident, the attending always reversed whatever the resident said and I never saw the same attending consecutively. It was crazy making. The fall of 2006 was one of the worst of my adult life.

After the second flare, I started on mtx 15 mg a week and began the worlds slowest taper from pred forte - slow because withdrawl from pred forte failed again about 2 months after I started the mtx. Complicating things was horrendous dry eye which caused an eye infection. Plugs and restasis helped but the later took months and the first few months on restasis is hell - worth it in the long run but horrible in the short run. About six months after things returned, I developed what they thought was a fungal infection on my arms. They reduced the mtx and sent me to a dermatologist who said I had flat warts. The rheumy's in the clinic didn't believe it and sent me to another dermatologist but you know how long you wait to see a dermatologist - by that point, the rash was gone and the iritis was back, this time in both eyes and my joint disease had picked up a bit of speed. They added plaquinel. It was at this point that my PCP stepped in - too many doctors she said, too little communication and not enough progress. She moved me out of the MGH clinic and over to the Brigham where I now see Dr. Coblyn. She also made Dr. Papilidous my sole eye doc. It was a brilliant move on her part. Dr. P increased the level of immunosuppression and since then I haven't had an episode of iritis. The move was just in time because I had been on pred forte for probably 10 of the preceeding 12 months and the pressures in my eyes finally rose to the point where I had to stop the occular steriods. Whats amazing is that there is no damage to either of my eyes. I had synechiae (sp?) but they were addressed with the dilating drops. I feel very fortunate and Dr. P is fabulous - he explains things well and is open to questions etc..

Last summer, I had an inner ear infection - couldn't stand up, couldn't sit up without falling down. It took a couple of months to completely resolve. While my eyes were quiet, my joints persisted with my hips joining the fray. The pain in my hips was probably the first time I felt pain that reminded me of my childhood. My rheumy put me on prednisone but as we tried to taper off, the symptoms returned so he increased the MTX to 20mg but then the rash returned on my arms. He discontinued the plaquinel and after 3 months, the rash went away. He said it was related to the plaquinel, common side effect he said but I don't know because it because it was the same rash I'd had the previous year that they called fungal, flat warts, ?????? Anyhow, I last saw my rheumy in March after finally stopping the steriods and he brought up moving to Humira or Remicade. I balked - there is 50 years worth of data on mtx but very little on these new drugs. I work in pharmaceutical research so I am familiar with the wonderful world of medicine. I saw Dr. P the first week of April and although my eyes look great, he thought I should go on the new meds. I flared in April and called my rheumy pretty much saying yes to anything he wanted to give me. I had contracted a horrible stomach bug the week before while traveling for work and I think that triggered the flare. Anyhow, the rheumatologist wanted me to see if things got better in a week or two and said we would discuss a change in medication at my next visit. Things didn't get better for another 4 or 5 years and I probably should have called him but I didn't. He was called out of the office unexpectedly last month and I had to change my visit from June to July and then they called again and said they needed to push it back to August. This is the longest I have gone without seeing the rheumatologist since the disease recurred.

I suspect I should give him a call and request that he see me sooner. Its ironic because my hands, feet and hips were so good starting the last week in May and continuing through to today. Very little swelling and no real pain to speak of - I did start back on the naprosyn yesterday taking one when I got home, another before bed and another this morning and the pain in my ear is better so I guess I know what that means.

I will go back through my records to make sure they did the Panca and I will check out Cogan's syndrome as well and I will call Dr. Coblyn. He is generally quite responsive and personally I find him caring and compassionate - can't say that I found that to be the case in the clinic. I have two last questions for you if I may.

If you have a primary, a rheumy and a eye guy - who would you call when you have an infection or a stomach bug that lasts for 4 days? I call my primary - she has been my doc for 16 years and generally she resolves everything and leaves a note for the other two doctors. They are all in the same system.

Brigham and Women's now has a clinic for adults with JRA. Coblyn heads the RA unit at B&W and is clearly experienced but I sometimes wonder if I wouldn't be better off seeing someone who specializes in adults with JRA. Any thoughts?
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Postby Mike Bartolatz » Tue Jul 08, 2008 11:35 am

DR P is an Excellent Ocular Immunologist at MEEI, replacing Dr C Stephen Foster who was there for about 30 years and started the Ocular immunology and Uveitis Service there. there is absolutely on one in the USA with the skills of Dr Foster regarding JRA in children or Adults and he now practices at his new clinic the MERSI in Cambridge. Personally I would make an appointment with CSF. his website is http://www.uveitis.org where appointment information can be found. I suggest that you contact his office and make an appointment. if you indicate that I have sent you to him, that should expedite your appointment IF he is in the Country or not lecturing out of area.
make sure you indicate that you want to see HIM, not one of the other doctors there, they are all excellent however. if needed. talk to France Foster who is a nurse practicioner as wellas his wife who heads the staff. she had JRA related uveitis and CSF saved her vision. she will make sure you see him

one of the possible consequences of biologicals such as Remicade and Humira is that Lupus like disease can occur. with your Pos. ANA the mixed connective tissue disease processes can occur. this includes systemic Lupus erythematosus and Sjogren's syndrome. sometimes it can take several years before the antibodies for one of them appears in the blood tests. with your severe dry eyes, one of them may present at some time. often these tests are repeated annually. your treatment with Plaquenil is the preferred drug for these diseases but sometimes one has to move to another DMARD drug or even biologicals. for me, HUMIRA would be the drug of choice since it is made from HUMAN antibodies. But, I am not a doctor and only your specialist can advise what is best for you.

while on any DMARD drug for your uveitis, the first call should be to the Primary care with follow up to the uveitis specialist. the DMARD would be stopped and flare up of the uveitis can ensue. then perhaps antibiotics whould be initiated in collaboration with both docotors so that the DMARD could be started soon.

As an Aside, Dr Foster is board certified in rheumatology as well as Opthalmology and internal medicine if I recall correctly. I have had the pleasure of meeting him while attending a Walk for VIsion event in Boston several years ago meeting Frances as well. I attended the American Academy of Opthalmolgy course on Ocular Inflammatory disease and Uveitis while there as well. you will find no one who is more knowledgeable about your condition in the World. he has literally writtent the 'book' on the use of all forms of treatment pioneering the use of DMARD and other meds for this stuff.

I have severe dry eyes so I know how debilitating it can be. I have punctal plugs which have allowed it to be managable but still use lubricating gel eyedrops periodically throughout the night and lubricating eyedrops during the day. in many ways the dry eyes issue is more painful than the uveitis especially when ones eyelids stick to the eyeball during the night and one has to force the eyelid from the eyeball in order to put in the eyedrops. I have to deal with the VA medical system for care which preclude things like restasis. I have to hand feed information to my primary caregiver to get help with meds.

Mary who posts here has had inner ear disease and is now blind and mostly deaf.. she also has RA and Sjogren's like disease.

Please read articles I have posted in various forums at this site on Mixed connective tissue diseases, Sjogren's syndrome, SLE and amyloidosis. I mention amyloidosis as it sometimes gives deposits in the skin called plaques. often these autoimmune diseases appear in multiples and then it is called Multiple Autoimmune disease (MAD). there are 4 types and an article differentiates between them. we know you have at least three, JRA, Uveitis and Hashimoto's thyroiditis so treatment options are best addressed by someone used to treating them.

Wishing you the very best,
Mike Bartolatz
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Postby Mike Bartolatz » Tue Jul 08, 2008 12:19 pm

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RA & Iritis

Postby kls33628 » Tue Jul 08, 2008 1:26 pm

Mike,

Thanks for the wealth of information. I think everyone was a bit surprised when the test for sjogrens came back negative. Are you saying that that might change over time? My eyes were so dry that I'd wake up constantly because of the pain. I started taking sleep meds becuase that was the only way I could get through the night. The restasis is ridiculously expensive and my company puts it on the brand non formulary list because it doesn't feel like it is an essential drug. It might not be for the average post menopasual woman with dry eye but its been a godsend for me. My share is $110 per month but I usually manage to get 4 drops from one file so that brings the cost down quite a bit. I think many people give up on the drug since you really don't even start to see the benefit for a couple of months and really the majority of the benefit for me was 6-12 months after I started taking it. Right now, I use supplmental tears a few times a week - thats right, a week. I used to go through a bottle of artificial tears every week.

They tested for everything you have on the list. There was a concerted discussion regarding MAD for the reasons you cited and also because I sometimes have a facial rash similar to that seen in patients with SLE. This is a large part of the reason why the biologics scare me - that and the risk of demylinating disorders. I didn't think that iritis was an auto-immune disease in and of itself but a manifestation of the arthritis in my eyes. My primary is clearly most concerned about cardiovascular disease. My lipids went crazy shortly after diagnosis and my sugar levels through the roof. Both of them are now much better but I have been hypertensive for many years now, am on a dyazide and respond well to it. She has been most concerned about the systemic nature of the diseases and what it will mean for me when I am older. As time goes on, I understand and appreciate this point of view more and more.

My ANA has always been positive and I was under the impression that it always would be because of the hashimoto's. What has changed is the titer ratio which last year was 1:320 - not great but my understanding is not that bad either. Should they be retesting for some of the other diagnostics on a regular basis or only in response to some change, like perhaps this one?

The ENT guy said that my hearing was borderline normal. My significant other would argue with that but the line between hearing and listening isn't always that well defined. I expected to perform less well than I did largely because of the comments of others these last couple of years. I generally blame it on either the grateful dead or the clash and at least that generates a laugh and changes the topic of conversation. The ENT guy didn't say that the inner bones were inflamed, he said that the tendons connected to the mastoid bone was inflamed. The pain behind my ear is what drove me to the doctor to begin with - so sore you can't touch it, red and swollen. I think my primary was concerned that the mastoid was infected even though my fever is not that high.

Thanks also for your information about Dr. Foster. I have seen that web site and couldn't exactly figure out what the relationship was between the two. I thought maybe Dr. P was MEEI and Dr. Foster MGH. I didn't realize that he was also a rheumatologist. You've given me things to consider and discuss with my primary and I thank you.

Again, my thanks for your time and knowledge

Kathy
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Postby Mike Bartolatz » Tue Jul 08, 2008 3:06 pm

as indicated in the article which discusses ANA and other serum markers, the SSA, SSB and other pertinent antibodies may only present when SLE, Sjogren's or other connective tissue disease is ACTIVE. then they can disappear again. while on DMARD such as plaquenil it is common for the markers to go away (the drug is working) but if you stop, the disease can re activate.

Restasis is the ONLY drug approved by the FDA for severe dry eyes related to autoimmune disease processes. this would be a talking point with your insurance company to pay much more with a lower deductible. Dr Foster often has to write letters regarding off label use of meds.

Dr Foster continues with Harvard Medical School and does surgery at MEEI. He trains fellows in Ocular Immunology at MERSI his clinic (MASS Eye Research and Sugery Institute), he has an infusion clinc at MERSI as well as all Labs.
which lab that does various tests can make a very large difference in results as you probably well know with your background. I have known several individuls who were negative for antibodies for decades before they finally appeared yet they had symptoms of the various disease processes. this is true of SLE and Sjogren's, systemic sclerosis. dermatomyositis etc. even Vascular components showed negative labs until later on. I have also seen individuals with intermediate uveitis who presented with neurological symptoms of MS who only got diagnostic lesions on the brain or spinal cord a couple of decades later, the Central Nervous system can be compromised in the Mixed connective tissue diseases similar to what is present in MS presenting as NeuroMyelitis Optica. this includes transverse myelitis ANTI NMO IgG marker. ANTI RO 52 can present as transverse myelitis in SJogren's and Lupus patients.

if the rash on your face reappears take close up digital photos as well as any other rash that might appear.

are you still type II diabetic or was it corticosteroid induced by oral meds?
Metabolic Syndrome could be present with your high lipids and type II diabetes (I'm diabetic and take meds for it as well as lipids and high blood pressure and neurological disorders.
http://www.iritis.org/forum/viewtopic.php?t=1709 Metabolic Syndrome.

I get swelling below my ears just behind my Jaw which can be very painful when my dry mouth stuff kicks in. I have very dry skin as well and my hands and feet will crack if I don't use lotion yet I am negative for the markers for Sjogren's. I don't get mouth sores common to Sjogren's either. I have tinnitus in both ears, a constant high frequency screatch that changes in volume and which makes it difficult to hear in large gatherings.

uveitis is often considered to be an autoimmune disease process when all other causes are ruled out. especially in HLA B27 related uveitis without arthriits. Systemic treatment has to be done for whatever cause in order to calm the beast or it will eventually cause other changes within the eye such as cataract, glaucoma, cystoid macular edema, epiretinal membrane formation, vascularization of the retina with related complicatons of bleeding, etc,. the often recurrent nature of uveitis mandates the use of corticosteroids with initial presentation in order to stop the inflammation; but, other meds such as NSAIDS (celebrex, dolobid, indomethacin SR) or DMARD meds are used in a corticosteroid sparing approach to treatment. although Naprosyn is often used by rheumatologists, the above NSAIDS seem to give the most benefit in Uveitis Patients with trial in the order given to see effect. Dr Foster most often uses Celebrex because it coveres both types, COX I and COX 2 which I believe can be found in inflammation of uveitis as well as joints of the body.
SLE can cause optic neuritis and posterior segment disease too FYI.
I have known individuals with MCTD who had the butterfly rash related to SLE of the face. do you get a rash while out in the sun? often seen in the MCTD"s as well as from Plaquenil and MTX.

Wish you the best,
Mike
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Foodborne pathogens and autoimmune disease

Postby Mike Bartolatz » Tue Jul 08, 2008 6:07 pm

K
you had mentioned illness after travel and here is a link to the topic of foodborne pathogens and autoimmune disease.
http://www.cdc.gov/ncidod/eid/vol3no4/lindsay.htm#ref1
although things might not CAUSE uveitis, they seem to be able to trigger renewed inflammation, even an infection in your toe could incite renewed inflammation from what Dr Foster has indicated in response to questions at his ASK DR FOSTER forum at http://www.uveitis.org.

I should also mention that there are other causes of inner ear disease which can also present with uveitis and arthritis of the hands. this is granulomatus uveitis and can occur in Sarcoidosis patients and severe dry eyes is a complication as it attacks the lacrimal gland. Meniere's disease has also been seen along with uveitis.

Wish you the very best,
Mike
Last edited by Mike Bartolatz on Tue Jul 08, 2008 7:03 pm, edited 1 time in total.
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Postby Mike Bartolatz » Tue Jul 08, 2008 7:02 pm

http://books.google.com/books?id=yvZ996 ... &ct=result

here is an article on Hashimoto's thyroiditis which includes inner ear disease of which I was unaware or I forgot. can't keep some of this stuff straight so sorry for the roundabout with cogan's and meniere's syndrome.
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Postby kls33628 » Wed Jul 09, 2008 9:39 am

Mike,

You are a walking talking library my man - thank you. I've trolled this website off and on for the last couple of years but I can see now that action, not lurking would have been the best approach.

I think the oral steriods didn't help the diabetes but the truth of the matter is that the sugar went nuts just as I first started occular steriods which they say aren't systemic enough to trigger diabetes. The same was true for the lipids. They all went from normal to ridiculous in concert with the return of this disease. Now, the mtx diet helped me here. I had a very hard time adjusting to the mtx and lost about 20 or 25 pounds during my first year on the drug. Both my sugar and lipids have been normal ever since although I am well on my way to regaining that weight. The addition of leucovorin calcium, 50 mg, has greatly aided my ability to tolerate the mtx.

As for the sjogrens, thanks for sharing your personal experience. I have always had skin problems and blamed it on my mother as she is the same way. If we don't lotion our skin daily, abrasions and sometimes open sores will form on the skin. Arms are generally not as sensitive. Its not usually a problem for me because I take good care of my skin. I have not really had a problem with dry mouth. The biggest problem has been the eye balls as they literally get stuck sometimes if I quickly change the direction of my field of vision. As I said, the plugs and restasis have been a godsend and I am fortunate in that I can afford the restasis.

My ear pain is much better today - a little naprosyn goes a long way and I have stopped sleeping on that side and I think that helps as well. I intend to follow up with my rheumatologist and depending on how that goes, I may discuss with my primary the idea of switching doctors. The idea of a rheumatologist and an ophalmologist all in one is very attractive but I have to admit - I'd am loathe to leave Dr. P - I think he is amazing and I trust him. He is smart, up to date but better than all of it, he knows how to talk to you and always makes the time to do so. In all honesty, the only other doctor I actually trust is my PCP. Its not anything personal but generally the others are all so overwhelmed and often times limited in their interpersonal skills. Experience has taught me to keep the ones you trust. That said, I don't think the eye docs and the rheumys talk enough and reading each other e-notes isn't always enough.

Decisions, decisions, all the time. I should be grateful that I have options. Thanks for your help Mike. Will keep you posted. Be well, I will hold you in my thoughts and prayers.
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Postby Mike Bartolatz » Wed Jul 09, 2008 6:25 pm

I am a firm believer in educating people regarding their diseases so that they can become there own advocate. not understanding this stuff leaves you to possible problems down the road. few doctors actually explain the potential complications of medications or the disease if left untreated which can impact the patients decision making processes. cost is an issue for most of us of drugs and surgeries required to sometimes stop the inflammaton, biopsy fluid inside the eye for genetic testing to look for pathogens of all forms as well as for cancers which can 'masquerade' in some forms of ocular inflammatory disease. FYI there are links to things like A glossary of medical terms used in opthalmology which can be different than the general practice language used by most doctors. terms like phakic or aphakic mean the oposite of what one would think for example. phakic being with with the natural lens while aphakic means without the natural lens possibly with intral ocular lens implantation from glaucoma etc.

I try to make people at ease if at all possible. some people need a kick in the behind to realize how serious this stuff can be when long term consequences of the uveitis start robbing them of vision. potential things that the opthalmologists fail to tell them can occur and not even mentioning alternatives to a corticosteroid only treatment algorithm. I was only given the corticosteroid option, topical, injected and oral over a 30 year on and off again iridocylcitis which damaged my eyes and I developed cataracts, Glaucoma, epiretinal membranes, cystoid macular edema with enherant vision complications, fortunately I haven't developed vascularizaton of the retina or iris and today my eyes are quiet. my story began back when I was about 15 or so and I can empathize with the kids with JRA/JIA that get this early on. recently I recall that when I was a child of about 6, something major occurred with my eyes that they had no treatment for at that time. my parents have been dead for many years now so there isno way for me to go back to a hospital tosee what the diagnosis was at the time: but, I have a sneeky suspicion that it was iridocylitis. Doctors in 'small town USA' didn't have the knowledge base treat many things which could be done back East in Boston, Maryland, or even Kentucky where corticosteroids were first tried with uveitis patients(first research published in about 1950) in the Sixties when I got my diagnosis the pharmacy had to formulate corticosteroids for me to take as it was pretty new stuff for eye disease processes and probably wasn't even heard of until the early sixties in my neck of the woods. corticosteroids are still not 'approved' by the FDA for topical, injection or oral use with this stuff and everything is used 'off label' or through the Orphan Drug List for patient care with our 'rare disease'.

I hope that more individulas will join the group and tell their stories. I remember back in 1998 when I first started my online support work, meeting DR Foster online, and seeing the results of his work that he pioneered at MEEI when director of the uveitis clinic and then in 2003 actually meeting him, it choked me up. although CSF can seem brash at times, he really cares about his patients. MANY travel from around the World to see him and some from the west coast too. He litterally fixes the screw ups of many opthalmologist who fail to move on to chemotherapeutic immunomodulation early on in the disease processes such as JRA/JIA in a 2 year old child.

enough rambling.

Take care,
Mike
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HI, K

Postby mtbargeman » Fri Jul 18, 2008 10:30 am

I have had Autoimmune problems for most of my life, which are only now being recognized. I am 32. Be VERY careful of your ears- Several serious illnesses occurred when I was very young- I had bronchitis and pnuemonia 3 times before I was two years old, neither time did the staff at the hospitals think I would survive, but I did. Once I caught the 3-day Measles on top of a nasty case of bronchitis which had me in the hospital for a week, then another because I got so sick while in hospital. I used to wake up with my knees and hips screamingly painful and swollen. My parents thought it was growing pains- the docs brushed it off as such. I suspect that I had JIA, and yes, it WILL get in your ears, and YES it's painful. I was dx'ed a couple yrs. ago with Seronegative RA, but by then I was already mostly deaf. The inflammation can lead to infection, because it causes the Eustachian tubes to swell, and fluid gets stuck in the middle ear, rotting away the mastoid area. It hurts like hell. Keep your ears dry at all times. If you need allergy meds, take them. Use earplugs in the shower. Letting inflammation sit in the ear can cause the brain to be inflamed, as well, if the infection sits in there long enough. After so many infections, it will damage the nerves in your face and head, and cause loss of balance, and Central Vestibular Dysfunction. By all means, be aggressive in treating your ears. Treatment was not aggressive enough or in enough time for me- I blame that mostly on the lack of knowlege in 1978 compared to 2008. Don't take the chance. It's really not worth it.


As far as your eyes, yes, JIA can still wreak havoc, but it sounds like you have a solid plan there, and you are working hard to keep your eyes under control. Just make sure you treat your joints and ears aggressively, too. Keeping them in check and as healthy as possible will help keep your eyes as healthy as possible. Don't be afraid of the Biologicals- they have helped many, many, people all over the world to control the snowballing of Auto Immune processes. It was once explained to me that the reason folks seem to have more than one AI disease at a time is because when one disease process begins, it weakens the Autoimmune system, allowing other disease processes to begin, so we end up with kind of a "snowball headed for Hell" effect. Auto immunity issues such as we all face here are difficult to deal with and control. They never really go away. They go into remission, and sort of hide, rather like Dracula waiting for sunset. When a trigger, (sunset) like stress or another illness occurs, we flare, and sometimes, other things start to happen, too.

I hope this post doesn't scare you away. I am sharing my own experiences in the hopes that you will first of all, know you aren't a freak- you aren't alone in your strangenesses. Neither am I. Secondly, I wanted to point out about your ears, because I don't want anyone else to go thru what I have with surgeries and deafness and communication issues like you wouldn't believe. I have answered bizarre questions that were never asked with really bizarre answers because of the communication issues that Low Vision and being Hard of Hearing will cause.

Keep your Head up,

Mary
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