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Georgina,

Very best of luck with the MTX jabs. I'm sure Josh will get used to them,

and they have certainly helped Damien to get off the prednisolone - the oral

MTX had little effect. He now has to go to see the specialist only every

three months now (as opposed to monthly) which is another indication of how

well he is doing.

Best wishes,

Oliver

> [ ] Eye Exam

>

> From: Georgina <gmckin@...>

>

> Hi Everyone,

>

> Today Josh had his 6 month check up with the eye doctor. Good news and

> bad. Well, not so bad. He's been taking the Plaquinel/hydroxychloroquine

> (in conjunction with the MTX) for the past 3 years. Every year he gets

> the peripheral vision test and every 6 months the regular eye exam, the

> dilation and the color test. It's extremely rare to get the retinal

> damage that can sometimes result from Plaquinel use and even if you do,

> if it's caught in time and you discontinue the drug, it's usually

> reversible. So far, everything looks good in this regard. But..... My

> son has been taking Prednisone daily for over 4 years. Due to the

> steroids he had some slight, beginning cataracts that were first noted

> two years ago. They were minimal, caused no effect on his vision. Well,

> today the doctor said that there has been some degree of worsening. Not

> too bad but noticeable. It's something we should be concerned about but

> we don't have to take any action yet. He's familiar with Josh's medical

> history and knows that he wouldn't be on steroids if he didn't need to

> be. Decreasing the amount of prednisone to a safer daily dose has always

> been one of our priorities. Josh's still's is severe and very reactive

> and we haven't been too successful yet, in doing that. Lowest dose ever

> was 9mgs but then he had a major flare and had to get boosted up pretty

> quickly. One of these days his body will be more cooperative. For now,

> this is just another warning and a reminder for us. For everybody

> needing long-term, high dose steroids on a daily basis.

>

> Josh is 10 now. We don't know how long more he'll be needing steroids.

> According to the eye doctor, the lower the dose, the slower the

> progression of cataracts. They're not reversible but they are treatable.

> He says cataract surgery is very easy and usually has very good results.

> He says it's very likely that Josh will need the surgery in the future

> ... unless he's able to taper the dose or discontinue the steroids very

> soon. He says at this rate, probably by the time he's 16 or 17 years

> old. He was very matter of fact about it. Said it was important for me

> and Josh to understand the issues. Best to be prepared, just in case, so

> it wouldn't come as a surprise. So, that's the latest news. Tomorrow,

> Josh gets his first injection of methotrexate. Maybe this will be the

> boost he's needed to be able to taper down? I sure hope so. MTX has

> helped so many people wean off steroids. Didn't work for Josh in this

> regard, orally, but maybe this will do the trick. After we give this a

> try, I guess the next step is to more seriously consider Enbrel.

>

> Guess that's all the news for now. 'cept that Josh is feeling a little

> nervous about his shot tomorrow

> so if you can, send some positive mental energies :-) Thanks!

> Much Aloha,

> Georgina

>

>

> ---------------------------

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,

I've seen both an ophthalmologist and an optometrist as I've worn corrective

lenses since age 7. My optometrist gave me the best explanation of the

difference; an optometrist is trained to correct your vision and an

opthalmologist is trained in diseases of the eyes.

So it sounds like you're seeing exactly the right person!

By the way, my optometrist was VERY anxious to see me when I told him I was

recently diagnosed with RA. He really wants to keep up with my eye exams to

spot any changes as they occur. He was also almost as happy as I was when I

stopped plaquenil after 2 weeks when I had an allergic reaction (big

surprise and lucky me!).

Funny . . . both my dentist and eye doctor are quite pleased with my health

since I've been on AP for the past 4 months. I've given up on contact lenses

for the time being as my eyes are quite dry, but the dentist says my gums

and teeth haven't looked this good since I started seeing him. Goes to show,

once again, there are many improvements in general health using AP.

Marce

rheumatic eye exam

I've got an appointment with an opthalmologist next week. Does anyone

know: is an opthalmologist able to check for the various eye stuff that

sometimes happens with RA, or do I need to go to someone more specialized?

Thanx for any info...........

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Hi :

An opthalmologist can check all the various ailments. Mine always checks my

eyes for glucoma, cataracts and whatever else he thinks should be done. Please

ensure that he knows that you have RA and what med you are taking since the

medication can play a major role with your eyes. For example, plaquenil can

cause cataracts and if you are taking this drug you need to be tested every six

months at a minimum. good luck.

Mado

rheumatic eye exam

I've got an appointment with an opthalmologist next week. Does anyone know:

is an opthalmologist able to check for the various eye stuff that sometimes

happens with RA, or do I need to go to someone more specialized?

Thanx for any info...........

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  • 2 years later...
Guest guest

Becki-

The slit lamp exam should tell whether he has iritis. The doctor can

actually see white blood cells, which means there's inflammation. It's the

number of white blood cells which tell how severe the inflammation is. Good

luck.

Diane (, 3, pauci)

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Becki-

Re 's age, 's been having the exams since she was 17 mos. It was

hard until recently to get her to put her chin down on the chin rest and

position her head correctly for the slit lamp exam. I had to force her head

into the right position and she'd scream. Now having done it so many times,

and because she's 3, we have no problem. She puts her chin right on the rest

and stays still. Also, the pediatric opthamologist does an eye test with a

chart. Instead of letters, it has pictures of ducks and bikes, etc. It

works really well. 's never had a glaucoma test.

Diane (, 3, pauci)

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Guest guest

Hi Becki,

Just putting my two cents worth in - Did they say they would not be able to do

the glaucoma test (blowing air in the eyes)? I ask only because, last year when

Robbie had his consult with opthalmology while in the hospital - they did do the

test (and he was just 3 then) - and it was very difficult holding him still for

it. They did a full exam - and felt confident that his eyes were ok - I wasn't

sure that the glaucoma test was adequate - because he moved so much - and boy

was I glad it was over.

I was really surprised at how much Robbie was able to do at the eye doctor - if

they are set up for pediatric eye exams they can pretty much do it all. I was

shocked when at 3 months they tested his vision (because he was a preemie) -

they were able to tell me that he had near perfect vision then - that he might

be slightly nearsighted - and they would be able to tell that better when he was

a little older.

Anyway - good luck with the eye exam - I need to make Robbie's appt - and I am

not looking forward to it.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 25 Jun 2002 10:09:18 AM Eastern Standard Time,

alarson1@... writes:

>

>

> Hi yall,

> Its Becki, goes in for his first eye exam soon.I made his

> appointment with a local opthamoligist instead of driving to Vandy.I

> dont know what to expect or what this dr knows about steroids and

> Plaquenil.I know being systemic his risk for Iritis or Uvitis is very

> low but should I still have him checked incase he is one of the 1%.I

> know he should get tested for cataracts and glaucoma due to the pred.We

> need to have a good talk about the Plaquenil because the majority of

> side affects relate to vision. is so young and his communication

> skills are still poor,that I am so afraid if he starts to have a problem

> he wont be able to tell and just get used to it like the pain.Any advise

> on things I should tell the dr will be helpful,and what I might

> expect,there is no way they can blow air in his eye to check for

> glaucoma.Does a slit-eye test tell all?Georgina if you read this

> and Josh are in the same boat as far as being systemic and taking pred

> and Plaquenil.What do the check with Josh?

> Becki and 3systemic

>

>

>

>

>

>

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Guest guest

Thanks alot Val,

Ok so this may not be easy. is seeing a regular Opthomolagist that sees ped

patiants.Later in July our city of 69,000 is getting a ped opthomoligist,if

things dont go well or this dr thinks it would be better Ill make the next

appointment with the new dr.I will probably switch anyway, just because when I

called the dr office that is getting the ped dr,while I was on hold the

recording was saying that they will be adding a pediatric opthomoligast in late

July and it went on to say he did a trial

on the affects of steroid use in pediatric cancer patiants.That knowledge sure

wont hurt.Mayby and I should start playing eye dr to at least give him

some idea of what to expect.Have a great day and I hope Robbie continues to do

good.

Becki and 3systemic

carneyval@... wrote:

> Hi Becki,

> Just putting my two cents worth in - Did they say they would not be able to do

the glaucoma test (blowing air in the eyes)? I ask only because, last year when

Robbie had his consult with opthalmology while in the hospital - they did do the

test (and he was just 3 then) - and it was very difficult holding him still for

it. They did a full exam - and felt confident that his eyes were ok - I wasn't

sure that the glaucoma test was adequate - because he moved so much - and boy

was I glad it was over.

>

> I was really surprised at how much Robbie was able to do at the eye doctor -

if they are set up for pediatric eye exams they can pretty much do it all. I

was shocked when at 3 months they tested his vision (because he was a preemie) -

they were able to tell me that he had near perfect vision then - that he might

be slightly nearsighted - and they would be able to tell that better when he was

a little older.

>

> Anyway - good luck with the eye exam - I need to make Robbie's appt - and I am

not looking forward to it.

>

> Val

> Rob's Mom (4,systemic)

>

> In a message dated Tue, 25 Jun 2002 10:09:18 AM Eastern Standard Time,

alarson1@... writes:

>

> >

> >

> > Hi yall,

> > Its Becki, goes in for his first eye exam soon.I made his

> > appointment with a local opthamoligist instead of driving to Vandy.I

> > dont know what to expect or what this dr knows about steroids and

> > Plaquenil.I know being systemic his risk for Iritis or Uvitis is very

> > low but should I still have him checked incase he is one of the 1%.I

> > know he should get tested for cataracts and glaucoma due to the pred.We

> > need to have a good talk about the Plaquenil because the majority of

> > side affects relate to vision. is so young and his communication

> > skills are still poor,that I am so afraid if he starts to have a problem

> > he wont be able to tell and just get used to it like the pain.Any advise

> > on things I should tell the dr will be helpful,and what I might

> > expect,there is no way they can blow air in his eye to check for

> > glaucoma.Does a slit-eye test tell all?Georgina if you read this

> > and Josh are in the same boat as far as being systemic and taking pred

> > and Plaquenil.What do the check with Josh?

> > Becki and 3systemic

> >

> >

> >

> >

> >

> >

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Guest guest

Hi Becki -

Switching to the ped opthalmologist may not be a bad idea - particularly with

his experience with kids on steriods. Playing eye doctor might not be a bad

idea too. Hope my post wasn't too negative, but I thought I would let you know.

Thanks for thinking of Robbie! Take care!

Val

Rob's Mom (4,systemic)

In a message dated Tue, 25 Jun 2002 10:55:14 AM Eastern Standard Time,

alarson1@... writes:

>

>

> Thanks alot Val,

> Ok so this may not be easy. is seeing a regular Opthomolagist that sees

ped patiants.Later in July our city of 69,000 is getting a ped opthomoligist,if

things dont go well or this dr thinks it would be better Ill make the next

appointment with the new dr.I will probably switch anyway, just because when I

called the dr office that is getting the ped dr,while I was on hold the

recording was saying that they will be adding a pediatric opthomoligast in late

July and it went on to say he did a trial

> on the affects of steroid use in pediatric cancer patiants.That knowledge sure

wont hurt.Mayby and I should start playing eye dr to at least give him

some idea of what to expect.Have a great day and I hope Robbie continues to do

good.

> Becki and 3systemic

>

> carneyval@... wrote:

>

> > Hi Becki,

> > Just putting my two cents worth in - Did they say they would not be able to

do the glaucoma test (blowing air in the eyes)? I ask only because, last year

when Robbie had his consult with opthalmology while in the hospital - they did

do the test (and he was just 3 then) - and it was very difficult holding him

still for it. They did a full exam - and felt confident that his eyes were ok

- I wasn't sure that the glaucoma test was adequate - because he moved so much -

and boy was I glad it was over.

> >

> > I was really surprised at how much Robbie was able to do at the eye doctor -

if they are set up for pediatric eye exams they can pretty much do it all. I

was shocked when at 3 months they tested his vision (because he was a preemie) -

they were able to tell me that he had near perfect vision then - that he might

be slightly nearsighted - and they would be able to tell that better when he was

a little older.

> >

> > Anyway - good luck with the eye exam - I need to make Robbie's appt - and I

am not looking forward to it.

> >

> > Val

> > Rob's Mom (4,systemic)

> >

> > In a message dated Tue, 25 Jun 2002 10:09:18 AM Eastern Standard Time,

alarson1@... writes:

> >

> > >

> > >

> > > Hi yall,

> > > Its Becki, goes in for his first eye exam soon.I made his

> > > appointment with a local opthamoligist instead of driving to Vandy.I

> > > dont know what to expect or what this dr knows about steroids and

> > > Plaquenil.I know being systemic his risk for Iritis or Uvitis is very

> > > low but should I still have him checked incase he is one of the 1%.I

> > > know he should get tested for cataracts and glaucoma due to the pred.We

> > > need to have a good talk about the Plaquenil because the majority of

> > > side affects relate to vision. is so young and his communication

> > > skills are still poor,that I am so afraid if he starts to have a problem

> > > he wont be able to tell and just get used to it like the pain.Any advise

> > > on things I should tell the dr will be helpful,and what I might

> > > expect,there is no way they can blow air in his eye to check for

> > > glaucoma.Does a slit-eye test tell all?Georgina if you read this

> > > and Josh are in the same boat as far as being systemic and taking pred

> > > and Plaquenil.What do the check with Josh?

> > > Becki and 3systemic

> > >

> > >

> > >

> > >

> > >

> > >

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  • 2 years later...

I'm going to the eye dr. tomorrow for my first complete eye exam

since getting out of the mold three years ago. Besides the visual

contrast test (if he has it) is there any other kind of eye test

anyone suggest I should request?

I want to make sure I don't have any lasting effects from the molds

in my place. My eyes are a bit redder and itchier than before the

mold. But even if they weren't, I'd be concerned because the whites

turned completely red one time, after I inhaled a faceful of

dust/mold.

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Trudy,

I do find you an inspiration, and Lori, and everyone else, too. Even though I don't write too often, I check my mail most days. It is an amazing safety net for me. At the moment I'm back on prednisone and antibiotics for sinusitis and a chest infection post-flu. It is just so reassuring to know there are other people out there somewhere to are also coping /learning to cope with Samters and all the necessary medication and examinations/interference that goes with it!

Keep going everyone!

Becky xTrudy <iamthezookeeper@...> wrote:

Lori...I too hope one day they come up with a safe alternative to the meds we use but doubt we will see it in our lifetime. Well, mine anway. I have mentally "fought" using the nasal/oral steroids and other meds for 23 years now and finally decided to accept them and take an active part in keeping the side effects low. It has made a difference in the anxiety level I was having daily. I get my yearly eye exam to make sure glaucoma/cataracts don't start, take calcium chews/vitamin D, care for and check my skin often, realize my carbohydrate addiction is from prednisone and try to make better food choices (that one doesn't always work!), am going to add a stretching/muscles strengthening program as soon as the CSS treatment starts if I can, and realize if I wasn't going through this, it would be something else. Between the samters,

mucoceles, churg-strauss I was slowing sinking into the pit of despair and still get very depressed at my situation though I am working with a counselor weekly to see things differently and find the good in all of this. I want to thank all of you for sharing so much of your life on this group, it has been the one constant that helps somedays. Trudy.- In samters , "truelori" <lori@t...> wrote:> > Had an eye exam today with the son of my great primary care > physician. Very convenient as they're in the same office. He was so > through and nice. Actually I was there for over an hour! He > explained a lot of stuff to me.> > Good news is there is no evidence of any increased pressure from my > now religious use of Nasonex and no other damage. He said if the > benefit is important to me (which it is SO important!) I should keep

> using the nasal spray and just make sure to get my annual eye exams > and keep him informed of the nasal spray use so he can be extra > careful to watch out for glaucoma and cataracts as I age. > > That was a relief. My prayer is that something else will be > discovered so I won't have to take these sprays for the rest of my > life.> > Lori

ALL-NEW Messenger - all new features - even more fun!

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  • 1 year later...

Hi,

Does anyone know if there is any form of mercury in the eye drops used for the

comprehensive eye exam to dilate the eyes? If yes, is there a specfic eye

dilation to ask

for?

Thanks,

Cer

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there could be depending on the brand they are using.

I would ask to see the label or pharmaceutical insert that comes with

it.

>

> Hi,

> Does anyone know if there is any form of mercury in the eye drops

used for the

> comprehensive eye exam to dilate the eyes? If yes, is there a

specfic eye dilation to ask

> for?

> Thanks,

> Cer

>

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