Hi all,
Am pretty new to the world of Sjogrens. To me, Sjogrens was just giving a name to some symptoms I already had, but I had also hoped it meant a cure for some cysts in my lungs. Not the case.
I was diagnosed with LAM last December (Lymphangioleiomyomatosis) and didn't get to see a doctor about this until March this year. She raised the possibility of sjogrens, given I have dry eyes. Blood tests were done and result was positive. I saw two more doctors a few weeks after that, another pulmonary specialist and a rheumy. Rheumy has confirmed my dry eyes, and symptoms of dryness in glands (jaws and glands in throat) as well as some mild arthritis which I've always just put down to sporting injuries over the years. The eyes for me are the worst, they are pretty bad.
anyway, diagnosis from all three doctors is that I have both Sjogrens and LAM. The cysts on my lungs are at this stage not causing any side effects and they believe that my LAM is at onset. Nothing can be done for me with regards to the cysts until I start getting some symptoms (in other words, until I start getting worse). No lung biopsy has been recommended at this stage, given I am "healthy". I'm happy to not have a biopsy done, not necessary for me, particularly when they can't do anything for me anyway.
For Sjogrens, I'm on plaquenil, 200mg per day (I think? assuming each tablet is 100mg?) but i must confess that I am useless at taking tablets and most of the time forget. Similarly, when my eyes are good, I never use eye drops and then curse myself when they start getting bad again. I've been prescribed FML for my eyes, so I generally don't like to use it all the time anyway.
really interested to know what everyone else uses for eyes?
Oh, and I'm also in Australia.
Look forward to reading more on here!
Hi Maistro,
Let me welcome you to the SJS World and family! Please do look around the board by using the search engine located on the upper left hand side of this page as there are so many topics and a tremendous amount of information to be had. Now let's not mention the scads of wonderful members here as well; shhhhh, this is just our little secret, right? ;) :D
I know what you mean about forgetting to take your meds! For the first couple of months of having to take meds, I forgot them more often than I remembered, it was awful. Now a days I can take them without even thinking about it anymore (used to never take pills other than an occasional vitamin or an aspirin now and then). Hang in there, you can do it, honest!
For my eyes, I'm prescribed Restasis twice a day, and use preservative free drops in between. I also use warm wet wash cloths twice a day as I have MGD and it's supposed to help open up the glands by my eye lashes (nothing so far, but I'm still trying! :)). I also use Soothe XP when I'm not working (it's a bit thicker than other eye drops), and Viva for work (I often change the OTC drops as I'm still looking for a really good one that works when I'm at work).
Hopefully other members will stop by soon and let you know what they use.
Take care of yourself, and visit when you can -
Patze
Hi Maiestro :)
Welcome to Sjogren's world.
Most times Plaquenil comes in tablets of 200mg so i think you are probably on 400mg per day which is pretty standard. Have you been warned that it doesn't take effect for quite a few weeks - and sometimes up to five or six months? Usually it does help though. I use the alarm on my cell phone to remind me to take pills. (Brain fog is part of SjS too!)
I totally understand you not wanting to go through a procedure that would not result in immediate treatment of any sort.
Do you see an opthamologist? When you are on Plaquenil its good to see an opthamologist about every six months. In RARE cases - very rare - Plaquenil can harm your vision, so a regular check up is a good idea. They can deal with the dryness too.
I hope you find the site useful.
Take care - Scottie :)
Hi maiestro and welcome to Sjogrens World!
As far as eye drops go there are so many brands available that it is almost a trial and error as to what will work best for you. I have so many around the house....but I think I like the Refresh Liquidgel the best although it is a little thicker than the others. I also use Restasis twice a day as prescribed by my ophthalmologist.
If you go to the eye doctor they usually have samples...if you ask...maybe you can get some so you can try them out before buying them as they can become very expensive.
Welcome Maiestro:
Man I learn about new conditions every day here! Your lung thing is totally new to me.
For my eyes: I was using Restasis, but my entire supply got fried by high temperatures while in storage, and now I"m using and OTC thing called Systane recommended by my Ophthalmologist, and a pure water spray called Natures Tears. I use the spray during the night, and the drops and spray morning and night.
I also take Pilocarpine (which is generic for Salagen) I don't know how much it helps eyes, but it gives me really good saliva UNLESS I have to breathe through my mouth at night, in which case everything is horrible! So I use a saline solution to clear my nose and Nasonex as well.
Welcome
Keep us posted
Carolina
Oh yes systane eye drops, I've got those too. And some other gel that I can put on them at night when they are really bad (which is usually only if I'm really tired!)
yep I have an opthamologist, whom I try and see as regularly as I can. it's sometimes difficult given where I live, but I make do with it.
A reminder on the phone is a really good idea for the tablets too. Good idea, thanks!
How do you all handle the glare from the sun? I'm never without my sunglasses outside.
I MUST wear sunglasses. But I've always been bothered by glare from the sun, all my life.
Carolina