Lupus under control?

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acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 7/13/2014 7:39 AM (GMT -6)   
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!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/13/2014 11:48 AM (GMT -6)   
Sometimes that is just how Lupus acts. However, I think you are under-treated.

I would suggest you see the rheumy earlier - the next level of treatment to help quiet your lupus would be one of these: Imuran, Cellcept, MTX. I personally rate level of toxicity in that order. Since Lupus is so nicely unpredictable, it is impossible to determine which of these might help you. Some get help with Imuran, some Cellcept, some MTX. For instance, Imuran did nothing for me, but 18 months on Cellcept made my lupus very quiet - basically Cellcept was my miracle.

All of these take a while to help, so you might do better with some prednisone in the meanwhile to dial back all these "little things" that are adding up to make you miserable.

(Note: Not knowing what other stuff you are on for your other stuff -- these recommendations may be moot.)

Besides the food, vitamins, water - are you getting a moderate/light amount of regular exercise and getting deep refreshing sleep? Both can do wonders!

Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 7/13/2014 12:19 PM (GMT -6)   
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 :)
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/13/2014 8:29 PM (GMT -6)   
You mentioned skin coming off your thumb and forefinger....

Do you have a problem with the skin hardening, cracking, and then peeling? Mine has been doing this for a few months. Nothing seems to stop it.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 7/14/2014 4:16 AM (GMT -6)   
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?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/14/2014 7:59 PM (GMT -6)   
I've got to talk to my new rheumy about it. It stings so much at times. Very frustrating to deal with. If you find a solution let me know. I'm trying Emu oil to soak it in now.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/14/2014 11:18 PM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 7/15/2014 4:45 AM (GMT -6)   
Couchtater, emu oil is good and should help. I haven't found anything that will actually get rid of it for good though except when I first started the plaquenil. If I find something you will be the first to know!! Be careful of infection. Any spots that look like a pimple near the affected area will be your first sign. It's a hard place to avoid germs and I have had a few infections. Antibiotics should clear anything right up if you do.

Thanks Barbara, my next appointment is in September but I'm going to call before then I think. My uti is clearing up but now I feel as though I'm getting a throat infection if that is even possible. It doesn't even compare to what you are going through though. I believe in miracles too and pray for one for you :)

As I look back I think I have had lupus since I was young, like you. I really want to get this under control.

I hope you feel better soon too :)
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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