Had my first IVIG infusion yesterday...

[irish]

Tinker, First of all I think I would tend to disagree about the doc saying that Plaquenil is needed only when organs are involved. That is really 19th century thinking.  Many people take it to help with their inflammatory problems that are causing the aches and pains, fatigue, etc and other issues.

The last Rheumatologist I saw says that he gives all his sjogrens patients Plaq because he feels that it helps slow the inflammatory damage of the lungs plus he feels that it helps protect people from the lymphoma.

More and more docs are learning that a sjogrens patient does better if they start the plaquenil as soon as they are diagnosed. Plaquenil is a drug that was invented to treat malaria. Some people would be on it for years. THe researchers etc noticed that people with autoimmune issues were having remission in their symptoms. Thus it became a drug used to treat autoimmune issues. People with Rheumatoid arthritis take it some also. Plaquenil is the firstdrug used after Prednisone. The prednisone can be given at the same time and when the symptoms start to subside the prednisone is slowly tapered off.

Also, it is true that the majority of sjogrens patients need a psychiatrist to assess their anxiety and depression. This has become more widely realized in just the past few years. One article I read says that sjogrens patients seem to have more depression that other AID. Also, the majority of us suffer from insomnia of some degree plus restless legs. My theory(and I really think someone will eventually do a study and prove this) is that our brain chemicals are decreased because of the inflammatory process in our brains.

I worked for years with the brain fog etc and did no harm!!! I just had to make more notes and try and be more structured in order to accomplish things. There are times I can be sharp and on the days that I am feeling really awful my thought processes seem to slow down. I really think that if one can work as long as possible it is a benefit because it makes us use our brain. Once we are through working I have noticed that I don't have a deadline like I used to and just don't have to work as fast and furious and I think it makes my brain lazy. Sort of like sex, if you don't use it you lose it. Irish

[Tinker]

Thank you so much, Irish, for all the information. 

I want to take the plaquenil!!  I've been in bed for 10 yrs. and if this drug could help me, I'm all for it.

I'll am making an appt with another doc today.  I bought the book to learn as much as I could, but I do believe I am learning as much from all of you.

Plaquenil doesn't have many side effects so I want to go for it. 

Getting my life back would be SPECTACULAR!! 

Irish, thank you for giving me another viewpoint.  This book was published in 2004 and paperback in 2005, but it seems Dr. Lahita has a "out of touch" view on treatment. 

Thanks again.               Tinker