had my second doctor's appt today

And now the dance begins....

I went to my rheumatologist for the second time after my labwork came back.

I really like her.  She's very informative and takes into account the fact that I'm an RN so doesn't really sugarcoat anything which is nice.

I went into my history in my only other post on this site so I'll start from today rather than restate my history.  She lowered my Prednisone dose since I was doing well with it to 7.5mg daily for a month and then 5mg daily for the next month after that.  She said my last labwork was sufficient enough for her at the moment.  She is also starting me on Plaquenil 400mg daily.  She has named the beast Undifferentiated Connective Tissue Disease (UCTD).  She says she knows it's a copout but that I still don't yet fit the 4 out of 11 criteria for Lupus.  She wants to see me in two months and continue monitoring me.  She feels that something will occur that will make a diagnosis sooner or later.  All in all, I was fine with the appointment and diagnosis.  I'm sure I'll get frustrated with it sooner or later but at the moment, I'm feeling good.  Hopefully lowering my prednisone dose won't change that.  I'm a little worried.

A couple of questions that hopefully someone will be able to answer for me:

1.  Plaquenil- anything I should know about it from someone who has taken/is taking it?  I've read the literature and looked it up in my nursing med book and all that...but I want an insider opinion.  Did it work?  Side effects that you've had? Etc etc?  Anything you wanna tell me.

2.  I was supposed to go back to my PCP for more testing for PCOS (polycystic ovarian syndrome) since they found cysts on my ovaries last year before all my labwork came about.  I have been off of birth control pills for 2 months.  I'm worried that when they do these tests that they're going to want to put me on birth control pills.  Any thoughts on should I even worry about this other thing when I've got all this other diagnosis thing going on?  Any thought on birth control pills and how it affects our health/ lupus symptoms?

I hope today is finding everyone well!!

NOLAtoCO

I love plaq it increased my energy level and got rid of the morning stiffness/I have been hit by a bus feeling. I feel like it gave me my life back.
On the other hand I am one of the people for whom plaq makes me feel motion sick-this is controllable by eating carbohydrates when taking it. Unfortunately (and fortunately) the other side effect of plaq is the complete loss of appitite. I have lost 80 pounds in 18 months-I needed to but it is really all due to the plaq.

Hi Nola - I'm another UCTD dx with a rheumy who admits it's most likely lupus and will show up clinically eventually - but the longer it doesn't and is controlled with Plaq - so much the better.  I've been taking Plaq since December.  I felt better on it very quickly, and my hair stopped falling out within a couple weeks of starting.  I had a tiny bit of GI distress initially, but it was very shortlived, and really, I've had far bigger problems taking other meds, even vitamins. than the Plaq.  It helped my fatigue first, and then I also started noticing the morning stiffness was getting better.  I also felt it provided better mental clarity and creative energy.  It is my new best friend

That said - I did have a bad flare that started in Feb and hung on at various levels for a couple mos.  But I also have Fibro and spring was a doozy in my neck of the woods, I had to fly out of state to get my mother moved and settled into a retirement home when her vision failed, and I started taking a Statin drug for high cholesterol (which I had to stop).   All things ganged up on me and I felt pretty bad for awhile.   Can't imagine how I would have felt without the Plaq, though!!!  Anyway - I'm rounding the corner and feeling pretty good again now.  From what I have gathered from this forum - there will still be some flares and bad days - but far fewer with the Plaq.

I do think my sensitivity to sun has increased with the Plaq, and I was slow to learn the importance of SUNSCREEN (and make sure it is for both UVA and UVB).  I apply it everyday now.  I like Neutrogena spf 45 - but will get the 70 next time for summer time use.

I take 200 mg of Plaq in the AM and PM with food.  If I take it later in the evening, applesauce seems to work well as the best "buffer". 

Hope this helps - I don't know anything about bcp's or PCOS but I'm sure someone on here does!.

I hope the Plaquenil helps your symptoms and you start feeling much better soon!

Lucy

Nola, I split my plaq does 1 pill AM, in the PM. I eat oatmeal with my morning dose and it helps with the side effects (not normal nausia-upset stomach stuff...I get motionsick-which is actually a brain thing-something about the carbohydrates helps with that). Then in the PM I take it with dinner-have a potato or bread with dinner.
The side effect is certainly much less now (unfortunately I think) and I am eating more now then when I started this drug.
But basically plaquinel lets me live a pretty normal life.

Hi Nola,

I don't have much to add as everyone has given great advice. I'm glad you found us here, you will find lots of great people and great info and support. The loss of appetite is normal when starting on Plaq. When I started, the only thing I could really eat was cereal as nothing sounded good to me. Oh that... and popsicles :) I also take my Plaq twice a day instead of a full dose once a day. Welcome!

I don't wait 12 hours in between. I take one with breakfast and one with dinner. I don't think there's a specific time you have to wait, because if I wanted I could take both in the morning. It's just better supposedly for the nausea it can cause if you split the dose.

My rhuemy told me that she has most of her patients take the whole dose at once. I was on plaq before (7 years ago) though and had to stop taking it because the motion sick feeling was all consuming and lasted all day every day-horrible.
Recently I got sick enough that I begged to go back on plaq despite the side effects. It hasn't been as bad this time but I still have days when the motion sickness shows up and days when I really don't want to eat.
Its worth it.

No, I take mine split because of the previous time when I was on it it being so bad.
My rhuemy does not suggest most people split their dose because most people don't have significant problems with it.
Sorry I confused you.

I take both pills (400 mg total) in the morning with food and have done so since dx in 2002...I had a few problems on the generic but everything has been fine since switching to the name brand Plaquenil.

I hope you guys find a workable way to take it soon - it really does take care of a great deal of the joint pain.

I've been doing pretty well with the Plaquenil so far. Joint pain has been ok. I've noticed a little bit of pain since my pred was decreased but nothing too horrible. I'm trying to get through it without raising my pred back up. Other than that, just been noticing some slight abdominal pain with upset (med related I'm sure) and some minor lower back pain (possibly kidney related? not sure...keeping an eye on it)

Thanks sjkly!
I really appreciate your input. This is still all very new to me...even with the prior medical knowledge I have.