Diagnosed with ILE...lupus
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Diagnosed with ILE...lupus
| 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.

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
Tina,
I hope the new med works quickly & well and that the pain meds do the job until then.
Tina, just wanted to be sure you knew we have a Lupus board, too
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 ~
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 ~
~ Tina ~
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
It would be a big blessing if HCQ helped me lose weight. I am a big girl...lol But
~ Tina ~
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