Lupus Support Group

I'm also lightheaded a lot.

I know how you feel I get the same way. The fatigue your talking about is something that is harder to treat. You might just need to give the plaquenil more time, it takes longer for some people to start feeling better. I'm also lightheaded alot but I just attribute it to the fatigue, or low blood pressure. Are there any parts of the day where you feel better at all? I usually feel my best in the mornings, then in the afternoon the fatigue is bad and then I am a little better at night. I just try and get things done during those better moments. I have started a multi-vitamin this seems to help a little. Just to be sure your not deficient in anything maybe you need to start taking one. You could also get checked for anemia which is common with Lupus. I have gotten checked a few times and I'm fine there, just good ole fatigue making me feel quimish.

Hi,
It says something that you felt better on the prednisone and now feel horrible. What that says to me is that there is still inflamation going on and your immune system is flaring/not under control. If you are on 400mg of plaquenil, you may need to have another medication added to it like MTX. I would not suggest prednisone since it is so bad to be on and so difficult to get off of once you have been on it for a longer period of time. Pred. is usually a last resort. If you have recently gotten off of the prednisone this could be why you feel so terrible as well. It takes a bit of time for our bodies to start to adjust to not having the added prednisone. You can feel sick with horrible joint/muscle pain while tapering and or just getting off of it. That may be what is happening. This is normal. Mention to your rheumy about adding Methotextrate to the plaquenil and see what she thinks. I understand how hard it is to care for a little one when you dont feel well. It can be torture at times. Lightheadedness can go along with a flare up. Hope this info helps a bit.
Hugs

I just re=read your post about when you went off pred. I think your still flaring which is why you feel so terrible. Your body should have already adjusted from being off the pred by now. If your on 400mg of plaquenil, definitely ask about MTX. It is usually the next step when plaquenil is working. You need to take both of them though. You should not stop plaquenil and go on MTX.

Hello, my Rheumatologist has just put me on Cyclosporin, he thought of MTX but decided the other would be better. I have been on Plaquenil since 2005, but of late was not working so well in the ":feel good" department. Essentially the drugs we take are to prevent organ damage and keep our illness under control, whilst they do that job pretty well you can still walk around feeling like total crap. I still get dips in energy levels, much the same as Allison, and Melissa is right, you should continue with the Plaquenil as well as MTX or whatever alternative is appropriate.

About the back and pelvic pain, have you had a Gyn. exam lately, there could be something there that is contributing. At my last visit to the Rheum. I told him about my crippling sciatica (when it happens I literally cannot move my left leg and the pain is terrible). He ordered an MRI of my spine, we are pretty certain Lupus is not the culprit.....perhaps some of your issues are related to other issues. I took Pred. once and never will again, it is not always an appropriate treatment for everyone. Anyway all the best, and try not to put so much pressure on yourself, it will just make you feel worse. Hope you feel better soon..

I am thinking about trying D-Ribose to see if there are any improvements. It can be found online or at a vitamin store. It is suppose to help with muscle weakness and energy. It has helped many fibro/cfs patients. You might want to google it.

Just a note about D-ribose. It has the side effect of really lowering your blood sugar. I took it for a while. My blood sugar runs on the low end of normal and when I took the d-ribose it made that issue worse.
If you take it in powdered form, try to make sure you take it with orange juice or even better, mixed in a beverage you take with a meal. I did notice a slight difference in my alertness while on it. I hope you have good results!

Thanks to everyone for your help!

Did you stop taking it b/c it lowered your blood sugar? I would like to try it. Last time I checked my blood sugar was on the low side, but not dangerously low. There are some that actually inject the D-Ribose and they said that it works for them better. I am willing to try it at this point. I have found that when I do the slightest bit of exercise my muscles will take a long time to heal, and they are very sore.

The lowering of the blood sugar was the reason I stopped it. My blood sugar went into the 50's the last time I took it. But in defense to the d-ribose, I didn't eat when I took it, I just drank it in some juice. I think it has a lot of potential, but the blood sugar thing made me a little too chicken to try it again right now. I'm with you, at this point I'd do anything to not feel so weak and tired.
My rheumatologist is sending me to a neurologist to check on this muscle weakness in my legs issue. Hopefully I'll get more answers soon. I'm ready to get on with life already. Good luck!