Diagnosed with ILE...lupus

iVillage Member
Registered: 04-27-2006
Diagnosed with ILE...lupus
9
Fri, 06-15-2007 - 7:07pm

I have been seeing an RA doc recently and she ran blood work, bone scan and other x-rays. I was told yesterday that I have incomplete lupus. I have all the symptoms of lupus except the organ threatening damage, which is why it is considered incomplete lupus she said. My fear is that I do have a bad kidney and I am hoping this never affects it.

     ~ Tina ~

iVillage Member
Registered: 07-22-2006
Fri, 06-15-2007 - 7:39pm

Hi Tina,

I take hydroxychloroquine which is the generic of plaquenil for SLE (systemic lupus). It took me about 4-6 weeks to notice a major difference in my energy level. Were you put on the standard 400mg? I remember that I didn't feel so great when I first started taking it (it upset my stomach) but I got over that in about a week.

I hope that you are feeling better quickly. I know how this lack of energy is- it totally drains you. The pain can be relentless, too. I just got over a minor flare and got off of a 6 day course of steroids- which can pep you up pretty quickly but can affect you BP, too.

Take care of yourself.
Hugs,
Peg

iVillage Member
Registered: 09-01-2004
Fri, 06-15-2007 - 9:22pm

Tina,


I hope the new med works quickly & well and that the pain meds do the job until then.

iVillage Member
Registered: 04-04-2005
Fri, 06-15-2007 - 9:58pm

Tina, just wanted to be sure you knew we have a Lupus board, too


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iVillage Member
Registered: 04-27-2006
Sat, 06-16-2007 - 9:16am

Hi Peg,


I am on 200mgs for 1 week to see how it does on my stomach and then 400mgs after that.


Sorry to hear about your flare. It really does suck. I was thinking my fatigue was all linked to depression but I found out it wasn't. I really hope the Plaquenil helps me quickly with some energy. I am sure you know how I feel about being tired of feeling like an old lady. The stiffenss and soreness get to me everyday, so I am hoping this meds helps with it.


Hang in there and I am glad the steroids helped pep you up.


Tina




     ~ Tina ~

iVillage Member
Registered: 04-27-2006
Sat, 06-16-2007 - 9:19am

Thanks Marci,


It really does make you feel exhausted. I hate it. I am hoping to see a difference with this med. I go back to the RA doc in 6 weeks to see how this med is doing.


It is better to have a dx's and be treated than none at all and not treated.


Thanks for the hugs


Tina




     ~ Tina ~

iVillage Member
Registered: 04-27-2006
Sat, 06-16-2007 - 9:21am
Thanks Cindi, I didn't know there was a board for lupus. I will go over there and say hi.



     ~ Tina ~

iVillage Member
Registered: 07-22-2006
Sat, 06-16-2007 - 10:27am

Hi Tina,

The steroids worked for a little while (basically for the few days I was taking them) but now I'm waiting for the hydroxychloroquine to kick back in. I was doing really well and losing a lot of weight so my rheumy cut it back to 200mg with hopes that I would stop losing weight (thinking the meds might have something to do with it). So, now I just upped the HCQ back to 400mg 1.5 weeks ago and I'm waiting for the effects to kick back in. I thought my fatigue was from depression also, I even called my pdoc and we upped my a/d.

There are a lot of good sites about lupus on the net. If you want to email me through my profile I can guide you to some that I found. The ladies on the Lupus board are also very helpful.

Hugs,
Peg

iVillage Member
Registered: 04-27-2006
Sat, 06-16-2007 - 6:34pm

It would be a big blessing if HCQ helped me lose weight. I am a big girl...lol But

     ~ Tina ~

iVillage Member
Registered: 07-22-2006
Sat, 06-16-2007 - 9:44pm

Hi Tina,

According to a few web sites, weight loss can be a side effect of HCQ.

I also tend to be more depressed when I am in a flare. The steroids can then make you manic or psychotic though, especially if you are on them long-term. I tend to get a little manic even on a 6 day course of steroids. The lupus does affect your thinking sometimes, they call it "brain fog" or "lupus fog" because of the foggy feeling it gives you.

Hugs,
Peg