Lupus under control?

Hi, I'm flaring 3-5 times a month and sometimes I don't even know the cause. This is on top of my regular, every day pain from arthritis, DDD, nerve damage etc.

I'm currently on plaquenil 400mgs daily and celebrex for my lupus. I'm on other stuff for my other stuff as well.

I'm eating healthy, taking vitamins, drinking boat loads of water and being very easy on myself and still I am flaring what seems like a lot.

Is this to be expected or do I need more aggressive treatment? Or can I take better care of myself? I just don't know what I'm doing wrong. Even my period starts a flare every month like clockwork.

I have another uti, my asthma is terrible, I'm a rash from head to toe, there's no skin left on my poor nose, index finger and thumb, my digestion is a mess, I'm just a mess. I hurt everywhere.

I see my rheumy again in September. I was doing not too bad when I saw her in June with the plaquenil. Should I call her before then or wait it out and hope it passes. I don't know what normal is or what to expect normal or under control to be.

Your wisdom is greatly appreciated! Help!

Thanks Lynnwood. I'm thinking along the same lines.

The other stuff is puffers, antibiotics (just for the latest uti for a week), some steroid creams... That sort of stuff.

I get my exercise pretty faithfully even if it's just a walk every day and my sleeping has been ok. I have even been taking naps! I've really grown to love naps :)

I feel like I need a little something more to quiet all these stupid miserable symptoms down as you mentioned and I'm not a real fan of meds so it's a real turn around for me. But I tend to listen to my intuition and it's saying I could feel better than this with a little help.

You have really reassured me, I needed to hear that. I hate feeling like a hypochondriac when I have to call the dr but I'm usually right when something is off and worse off when I put it off.

Thank you :)

Hi Couchtater, yes I have the same thing. I have tried everything, nothing seems to work. Then all of a sudden it started to clear up with the plaquenil only to start again with a vengeance.

When I'm home I put cream or coconut oil on it then vaseline and a cotton glove. That gives relief for a time as it won't crack. As soon as I take it off it's cracking and bleeding then peeling again. The cracks are really deep too and the skin that peels is very hard and thick.

I've been told it's eczema, contact dermatitis, psoriasis, you name it. I had to stop the steroid creams and limit them as my skin gets so thin that I have cut it open with a fingernail accidentally.

I'm really sorry to hear you have the same problem, it's not life threatening but it sure is bothersome! I've had it for at least 4 years now and I'm starting to connect it to when my other symptoms are not under control. Why else would it start clearing up with the plaquenil and only that?

Acquiesce:

I have to agree with Lynnwood, it sounds as if your lupus isn't controlled and you need one of the drugs that are used to control Lupus. When do you see your Rheumy next? I hope it's very soon so that you can get started on them.

I flare all the time, I can't remember when I last felt well. I put that down to that I just have so much going on in my body that my lupus NEVER gets quiet. I would love to get off the prednisone, but I've been told by 6 different Doctors this year that will never happen. They've also told me that, "This is as good as I'm good get, with time I'll only worsen and get sicker."

I pray and believe in miracles so, I'll hold on to that I may be healed or go quiet. However, I'm also realistic and I know that my chances of that happening is pretty slim. So, I live each day as it comes and make sure I tell those I love that I love them.

Good luck with your Rheumy and I hope you get to feeling better really soon.

Hugs,
Barbara