What do they mean 'Treat early and aggresively'?

[rudytudy]

I'm recently diagnosed and what does it mean when you read that 'by catching SS early you can treat it so it doesn't get worse.'    What kind of treatment could possibly stop SS symptoms from getting worse over the years?   I read that 'with proper, early diagnosis SS can be maintained....really?   By taking what?   My foggy thinking, fatigue and hand/wrist/feet arthritis get worse every year...

[Joe S.]

I know that the supplements and alternatives that I use help but that is not what they are talking about. Typically they are talking about Methotrexate (MTX) and Plaquinel. I personally can not take these two.

[irish]

The idea is to stop the inflammatory process that occurs during the autoimmune attack on our body. It used to be that doctors knew very little about the sjogrens and said it was just dry eyes, dry mouth, etc. With that being said, there are still quite a few doctors that think that but they are not up to snuff on their autoimmune diseases and treatments available.

I have been on this forum about7 years or so and at first there were very few people on plaquenil for their sjogrens. Plaquenil has been given for many years to people with rheumatoid arthritis and lupus but not for sjogrens.

The medical community has finally gotten some of their ducks in a row and many more docs are learning about sjogrens and its treatment. The treatment of choice for sjogrens is plaquenil.

Most of the time the plaquenil is started along with prednisone. The prednisone is to treat the symptoms that are occurring right at the moment. It takes plaquenil quite a few months to kick in and the prednisone is a welcome relief for many people. It helps with the pain and other symptoms that are causing misery until the plaquenil kicks in.

It is sort of a crap shoot trying to know when to start tapering down on the prednisone, but many docs will set a time schedule to start the prednisone taper. If the symptoms seem to remain quiet it is felt that the plaquenil has kicked in and the taper of the prednisone will continue. If the taper is started and the symptoms return then most likely the plaquenil hasn't kicked in. The prednisone dose is increased so that the symptoms go away and in a few weeks or so the taper is tried again.

It is felt that the sooner you start the plaquenil the more likely some of the symptoms or inflammation will cool down. Some docs just don't get this. If your doc is like this I would suggest talking with him and if he doesn't get on the band wagon then find another doc. It is work finding a new doc, but you deserve to have a doc who cares enough to treat your symptoms. Irish

[rudytudy]

thanks for the insight....though my Rheumy diagnosed me with SS (positive SSA and symptoms) he also pressed on the Fibro. points and they were sharply painful and he then said I had Fibromyalgia too and I left with a prescript. for Gabapentin which I have not yet filled...this was two weeks ago.  He didn't bring up the Plaquenil...I don't like to rush in to prescriptions...he wants to see me at the end of this month after my cervical MRI.
I just want to make sure if I start on a prescript. it is the best one for my main symptoms.
It's quite a walk in the dark sometimes isn't it?

[Scottietottie]

Hi 

In the UK they definitely see Plaquenil as being the first line to try. I was told that it would stop - or at least slow down progression and I was also told that in most cases progression is slow anyway. (As I've been having symptoms for nearly 30 years now in my case this is true) I only got dxd in 2006 though - and put on Plaquenil.

Take care - Scottie 

[Shade]

Can we sjoggies stay on Plaquenil forever?  Or is there a point were we need to get off Plaq for our bodies sake?

[Jellyb]

I am curious too about how long a person can continue taking plaquenil too,  does anyone know?

[irish]

I don't have a clue. I know that we are all different in our bodies acceptance and reaction to drugs.

I would think that if you did a search on "plaquenil discussion forums" you may find some threads that would address this issue. There are a ton of discussion forums out there and many of them are not so hot, but just finding some people who might state how many years they have been on the drug might answer some questions. Irish

[Scottietottie]

Hi 

I was put on Plaquenil in 2006 and there has been no suggestion that I stop it(apart from one lot of antibiotics I was given and the GP told me to quit while I was taking them) I resumed when the course was finished.

As long as one is not having side effects I think one can take them for life.

Take care - Scottie