apt w/ new Rheumy tomorrow... yikes...

[valene2009]

ok.. so i am traveling again-just 45 miles from home tomorrow to see a new Rheumy since the 6 in town will only allow me to see the same one i saw 3 years ago who wouldn't put me on plaquenil or anything.. or i could see someone in private practice but i didnt get a good feeling wheni called..

so my nice brother in law is driving me... i have got my paperwork done along with a list of meds-kinda embarrasing--i take so much stuff.. i know you all undertand that!@!

[mews]

Well I wish you all the luck in the world... I know how difficult it can be to see a new Dr and start that conversation all over again..it really stinks!

Let us know how you make out..we will be waiting to hear!

Good luck and Stay Well Mary

[Katybarstool]

Good luck Valene - I'll be keeping my fingers crossed for you.

Kathyx

[eye2dry]

Good Luck Valene.

I hope things click with you and your new rheumy.

eye2dry

[KellyG999]

I am glad you are taking charge by seeking a new rheumy. I am hoping this is the ONE who will really assist in managing your symptoms.

Please be clear on your expectations and don't be intimidated!

I hope it goes well.

Hugs,

KellyG

[valene2009]

thanks everyone just got home.. basically he told me to stay on plaquenil... i told him my doc first prescribed it wheni got diagnosed 15 years ago and had no symptoms.. i only took it for about a month but since i didnt have symptoms other then a minor dry mouth (nothing compared to now) i stopped.. he acted like if i would have continued to take it all these years that my eyes and mouth may not be dry like they are now??? i got pretty upset-he said with sjogrens the lacrimal and saliva glands get scarred and there is no going back... i said what about restasis and other drugs that may come out?  he said there would prob never be a cure in my lifetime (im 37)..  i was pretty letdown..

i know there isnt a lot they can do for us.. but do u guys agree-if i would have stayed on plaquenil all these years my eyes wouldnt be this bad??? can it really prevent a full on sjogrens attack?  he didnt say that excactly but IMPLIED it... i think it may have slowed some of this down but eventually my eyes would have gotten this bad...

im curious for other opinions.. i know i cant turn back time but it makes me feel awful.

[eye2dry]

Hi Valene.

My rheumy told me when he first dx me in 9/2010 to start my treatment now to avoid or slow down the progression of my Sjogrens.
I started with Plaquenil and prednisone to get all my symptoms calmed down, then later added methotrexate to help with my eyes and my rheumatoid arthritis.

I am too afraid to stop any of them. At the same time I am afraid of these drugs.

You'll have to educate yourself (people here will help you with info) and make your decisions you feel comfortable with.

I'll be pulling for you.

eye2dry

[Scottietottie]

Hi Valene 

I was also told by my rheumy that Plaquenil was used to slow down the progression of a slowly progressive disease. He reckons I will stay on it for life. My eyes are actually marginally better now than they were before Plaquenil. Mind you I'm also taking 3000mg of fishoil every day and I think it helps.
I have a feeling that when a doctor puts you on something it is probably better to stay on it until they say stop - unless it has obvious unwanted side effects.

Take care - Scottie 

[genko_b]

Dear Valene:

With so many medications it is hard to keep track of what they all do and how you should take them. Especially when you are first diagnosed there is a lot going on in your mind and that makes it even harder to keep everything straight the doctor is telling you. I usually take notes, but it is wise to have someone with you if possible to advocate for you. Some of my doctors now enter everything they tell me directly into the computer and print it out for me to take home.

I started Plaquenil when I was first diagnosed. My rheumy told me I would probably not feel any change at all in my symptoms - dryness, low energy - for at least 3 and most likely 6 months. So I was already primed to stay on the Plaquenil for that long at least. As Scottie says it is intended to slow down the progression of the disease. I have been on it for years and years now. The main reason to stop is if you begin to develop the more serious side effects; you should still report this to your doctor. That's why I see my eye doctor every 6 months at least, and more frequently if I'm having any problems with my eyes.

A lot of the other medications we use treat symptoms, making them less limiting for us, but do nothing to slow the actual disease progression like the Plaquenil does.

Take care,

Genko.

[Joe S.]

I am not on MTX or Plaq. I do not believe about your challenge with your sight and other symptoms related to Plaq. Maybe someone with more info will respond.