Question for the Brits...

[lelole]

Hi

Some of you may have read my recent post about the crappy Ophthalmologist I saw, who spent the whole appt telling me I was fine and I was unlikely to have SJS, until he finally did the Schirmer's test which came back with a result of 0.  By then he did give me some info, but I hadn't told him about half my symptoms as he never asked!

He didn't recommend anything other to try except to continue using viscotears but preservative free...and continue with the lacrilube at night.

The thing is, I am so uncomfortable! I don't feel like they are doing the trick, but I don't know what to do...
I am concerned on 2 fronts - firstly if my eyes are this dry, then just because there was no damage the day he saw them, doesn't mean there wont be in future, but he said I didn't need any follow up ... and secondly I don't feel the drops are cutting it - esp as I have had a few instances of blurry vision - including while driving...I also don't think lacrilube is much cop, but I don't have the money to try every drop under the sun!

What is the normal procedure? I was referred by the GP, so do I tell my GP? Complain to the hospital (work's medical insurance) and ask to see another ophthalmologist? Do I tell the Rheumy (who is lovely!) and I am seeing Thurs?

Thanks

Leah xx

[Chickpea]

Hi Leah

It's good that you're seeing your lovely rheumy so soon because that's probably the best route to a new opthalmologist.  And it sounds as though that's what you need.  Thankfully the one you saw didn't think you needed any follow-up because you wouldn't have wanted one with him anyway!

I'm sure you've got a list of issues to discuss with the rheumy so you can include this, and it doesn't have to sound as though you're making a big thing of it.  Professional courtesy will mean that the rheumy won't feel able to comment, but can send you to someone else.  Maybe you could ask for a SjS/AI expert opthalmologist? 

How are you feeling about the rheumy visit?

Take care - Chickpea

[Scottietottie]

Hi Leah 

I'm surprised that with eyes that dry, the opthamologist didn't want follow up appointments. My rheumy referred me to an opthamologist for plugs, which the opthamologist says I don't need as yet because my eyes, are on the dry side - but not that dry. He wants to see me every six months however. I think some of it is because I am on Plaquenil - but he says with SjS he believes in monitoring - so I'm surprised by yours.  I'd certainly mention it to your GP.

Take care - Scottie 

[lynnmarie219]

Hi Leah!

The normal procedure is to monitor our eyes on a regular basis due to the dryness to avoid damage like you mentioned. Have you called him back to let him know these drops are not working for you?  Most times the eye docs can give us samples of different drops to try out several of them without the cost....maybe you can ask about this?

If this doesn't work,  I would definitely talk to your doc (either the rheumy or the GP or both) to get another referral to a different ophthalmologist who is more aware of dry eye issues! 

Good luck to you!

[KYMOM]

Leah, Don't know about no follow up.  My eye doc told me that I needed to be seen at least once a year after diag and my eyes are not nearly as dry as some on the site. Roxanne

[lelole]

quick reply as funnily enough eyes REALLY bad today.  Thought it might be usual to follow up, so will deffo mentione to Rheum 2moro, will reply properly then tpoo!
Leah xx

[seren]

Hi Leah,

I went to my opticians 2 weeks ago to be told I have a half a tear film left and two corneal erosions on each eye.  Similarly to you, he didn't want a follow up appt but said to make sure I am vigilant with the gel tears from now on.  Since that visit my eye pain has gotten worse and I am also having trouble with the eye drops.

I find lacrilube burns my eyes despite them being preservative free and I use cellusvisc individual vials of PF tears.  I find they are not comforting enough for eyes and my eye pain is still happening everyday, I think my GP will send me to the hospital as he has already indicated this.  I am seeing him friday but I probably won't be able to talk after having my lip biopsy 

God luck with your appt tomorrow

[Merricat]

Hi Leah!
I agree with Chickpea - if you have a good relationship with your Rheumy, I would ask him/her for a referral to an ophthalmologist that has a better understanding of the needs of Sjogren's patients.
Merricat

[lelole]

HI guys,
Well I missed the boat a bit when I saw my Rheumy, as I was a bit flummoxed by the whole appt, and I was feeling really dippy that day as my 2 yr old had a cold - so I was up half the night (I now have the cold... ).

I am still suffering so I am waiting for the letter from the Rheumy to get to the GP, then I am going to make an appt with her to discuss all of this, I am really lucky with her - so hopefully she will advise me.  I just don't understand why he didn't offer me plugs? Esp as it was on private medical insurance not the NHS?

Leah xx