Doc took me off Plaquenil

[Rebecca]

I went to my Sjogren's doctor today for a 3 month check up.  I've been on Plaquenil for 6 months and Tramadol for 3 months.  I've been gluten free for 2 months.

So I get the doctor, pay my $40 co-pay and wait.  It is never really a long wait thankfully.  When the doctor comes in, she of course asks how I am doing.  I explain to her that I've been doing the Plaquenil 2 x daily, Tramadol 1 x daily and try to avoid it all together if possible, which is usually never but that I don't want to go to 2 x daily.  I explained that with the Plaquenil and the Tramadol, I was still battling pain in my joints and muscles and extreme fatigue so I decided to try going Gluten Free to see if this helped.  She asked if it did and I said that I have a bit more energy but that is it, that I read it takes 3-4 months for your body to purge all gluten so I was going to give it 4 months and see where I was.  She asked me if I thought the Plaquenil was helping me any and I told her I couldn't really tell a difference.  So she said to stop taking it b/c there is no point in taking a med that isn't helping.  But she didn't prescribe anything else!  She told me I should not be afraid to take 2 Tramadol a day if I think it will help.

We discussed the possibility of a Fibro diagnosis but she won't technically diagnose me and I can't figure out why she is so reluctant to do so.  She told me that she thought there was some other underlying issue causing my problems and that the Sjogren's was just stumbled upon.  But she isn't giving me any other diagnosis.  It is frustrating.  Don't get me wrong, I don't want to have any other illnesses but I just want to come up with solutions to what is ailing me and if I can't get a diagnosis, how can I get the proper treatment.  We discussed how stress and anxiety are major contributing factors to my  pain, yet she didn't prescribe anything to help with that.  So I feel like I have just taken a step backwards in  my treatment.  I am now on Tramadol only 1 to 2 times daily.  Maybe she is waiting to see if going gluten free is going to do it for me.  I don't know.  I think going gluten free is going to help some but is not going to be the complete answer.

It is totally frustrating me.

[Rebecca]

Another question:  does anyone have any experience with going off of Plaquenil?   I am a little worried about withdrawal possibilities or symptoms getting worse b/c I didn't realize Plaquenil was helping in the 1st place.  I remember thinking after a month or so that I thought it WAS helping.  Have I forgotten just how bad I felt back then b/c I still feel bad and just don't realize it is not AS BAD?  Yea, I am nervous about this.

[Sleepy In Seattle]

Definitely watch how you feel - lot of times, people don't realize how much Plaquenil is helping because the effects come on so slowly. - but when you go off it, after a week or so you kinda crash. If that happens, you should probably ask about going back on, because obviously it was helping!

I am surprised she took you off so readily - sometimes at 6 months you;re just STARTING to feel the full effects, and can continue to feel better for up to a year - if it's not working after a year, then yeah - why take something that doesn't help - but it's not unusual for people to not get the full benefit until 6-9 months or more.

She must have had other reasons for doing what she did - I'd just ask her for more information.

I'm sorry you're feeling lousy! 

[Rebecca]

Thanks for the input Sleepy.  I can't help but think she is playing around with the idea of 2nd diagnosis.  Maybe when I go back in 3 months, she will have something else for me to try.  I will be watching out for my symptoms after stopping the Plaquenil and if I start going downhill, I will call her immediately.