People w/Lupus...got a ??

[SandyRN]

I have a physical scheduled in about a week with my GP. He's going to re-do my labs and see if my ANA and Sed rates have changed...I'm actually HOPING that I'm flaring and have sores on my mouth and nose, etc, so that I can get an accurate dx. My question is, what do you take specifically to help the Lupus...more specifically, what do you take that helps the joint/bone pain?

Also, aren't people dx'd sometimes by symptoms even if the ANA is 'borderline' like mine was a few months ago? Somewhere I read that you had to have 6 out of 8 symptoms for a dx, and when I look at the symptoms I've got at least 6.

I dont know how many of you out there have Lupus, but I'm curious. I have Crohn's which is autoimmune, and think it's possible I have Sjorens because of severe dry eye/dry mouth, etc..seems even more likely that I have Lupus because of these other autoimmune problems. Maybe if I get this Lupus dx people will take me seriously when I say I hurt! Dont get me wrong, I dont WANT Lupus, I just want answers!!

[Babs RN]

Sandy,
Talk to Amy, I think she can answer your questions.

Hugs,
Barb:smile tee

[ihurttoo]

Thanks for the vote of confidence, Barb, but I dont know if I can answer ALL of them! LOL! But, I will give it a go! As for the d/x, I know what you mean about being thrilled to have a d/x that people have heard of and most recognize as a serious thing, that way you feel like you are finally validated. Sort of like, "See!! I TOLD you I was sick!" :lmao: But, unfortunately, even with the Lupus D/x, I STILL get, "But, you dont LOOK sick!!" :cussing: I mean, what does it take??!! Kind of makes you wonder if cancer patients heard that too, when they were bad sick, but before they got their d/xes!! So, I wouldnt get your hopes up too high about finally being taken seriously by Drs, friends, and family. Unfortnately, it still just doesnt happen! :cussing:

But, yes, sometimes people who are borderline are d/xed based soley on their symptoms, but particularly if one is +ANA.

As for the meds, I take Prednisone, and do well on it, but it is so hard on the body, that my Dr. always just puts me on it until I get over the hurdles, and then titrate off it. However, there have been a few bad flares where I have had to stay on it for several months at a time. (I know it is shallow, but the side-effect I hate the most, is the weight gain...I always gain alot when I am on it. :( But, it does wonders for me, and amazingly, even my IC tends to go in remission when I am on it! However, as you know, it is very hard on everything! **sigh**)

Regarding the meds for the joint/bone pain, I really havent struck upon anything that works well yet. The bone pain is hard to treat. (Fortunately, I dont have that symptom real often!) But, for me,the joint pain, seems to respond fairly well (usually) to anti-inflammatories along with the Morphine and Lortab. However, I know most ICers cant take anti=inflammatories. (Although, my dosages arent working too well right now either,(for any of my pain!), and I am trying to get my pain Dr to increase my doseages or switch me to something equivalant, since I think I am tolerant. (But they are making me do the nerve blocks again, (even though they cause me some MAJOR retention every other time), before they will raise it. :(

However, hopefully, if they D/x you with Lupus, then they will reevaluate your meds and find a different combo that would work better for you.

I wish I had more answers for you, but Lupus is so different for each person. (Even more than other diseases.) It presents differently in each person, and the same things that work for you one time, might not work the next time. It is so bizarre that way!

Anyway, I hope you dont have it either, but I can definately understand how that you are hoping that this could be the key that links all of your other things, that way, you will finally feel validated and can get down to the business of treating it.

I hope this helps, and wish I could explain better, but if you think of anything else, let me know, and I will do my best to answer.

Hope you feel better soon!

Many hugs,
Amy

[pingpong]

I've had lupus for over 20 years, and the drug I've been on the longest is plaquenil, or hydrochloroquine (a type of quinine, I believe). This is the most effective for my joint pains - several years ago, I went on a business trip but somehow forgot to put my plaquenil in my pill case with the other stuff. After going without it for about a week, I decided to stop taking it and see what would happen. After another week, my joints really started hurting! Started taking the stuff again, and in several days my joints started to improve. The only troublesome side effect from this is "chloroquin maculopathy" (sp?), which, if you can't understand my spelling, is vision-related. This means I'm supposed to get a "plaquenil check" once a year at my opthalmologist, which is sort of a modified visual fields exam - really tedious, but not painful or anything. My eye doc did tell me that he's never seen anyone who developed this problem, but the FDA says the test needs to be done. So far, no trouble for me. Apparently it also can cause changes to your color perception, so my eye exam always includes that funny book with all the colors! I've also been taking prednisone for a long time, although now I'm on a tiny dose, which is good, since the stuff has a long list of side effects. However, when you're in a lupus flare, the stuff is magic! Another drug I took for several months was imuran (azotheprene - sp?), which is an immunosuppressent that's also sometimes use for organ rejection. I was on that for about 10 years, and as I entered menopause my lupus calmed down a bit, so it was the first drug to go. (It has unfortunate side effects such as an increased risk of cancer and leukemia - much like cyclosporine.) If you have any other questions, you can pm me.

[ICNDonna]

I have a friend with lupus and I know she has some diet restrictions, but I don't know a lot about them other than the fact that she can't tolerate pork.

I sincerely hope you don't have it, but I know it's much easier to deal with a problem if you can identify the problem.

Warm hugs,
Donna

[SandyRN]

Thanks guys. I just feel like there has to be ONE major thing going on to tie all of these crazy problems together....the raynauds dx being one of them. My lower legs literally turn purple, and so do my hands..had all the ultrasounds done and my blood flow to my legs was normal at the time. So I had doctors looking at me like I was crazy. Went to a neuro who did a test on me where they shock the muscles, and watch the resulting twitch. That was the most painful thing I've ever been through in my life, and I'll NEVER do it again.

I seem to be such a medical mystery to everyone around me and for once I do just want to be validated. I dont want a major disease, I just want to understand for once in this long road what in the world is doing all of this to me.

The bone pain in my shins is incredibly painful, and of course it's gone now, but I'm actually hoping it will come back when I have my appt on the 24th. Those awful mouth/nose sores that I had....the overwhelming fatigue, the joint pain, the skin rashes, the skin itching.......all of it. When all this bladder stuff happened I was in and out of the hospital with massive kidney infections and poor kidney function. That at least, has seemed to resolve itself.

I feel like I could write a book.....then there is the Crohn's disease based on biopsy, but a positive celiac blood test. I'm a freak there too...my doctor said it's very rare to have the positive blood test for the celiac, but Crohn's shows up on the biopsy.

I feel like I should join a side show sometimes! I just want someone to tell me what in the world is wrong with me. Something we can treat and make it all go away, or at least be manageable.

I wrote way more than I meant to, but sometimes I just scratch my head because I don't even understand myself!

I'll let you guys know what the doc says at my next visit, and if these results come back borderline or negative I'm not sure what to do next. I'm tired of seeing doctors who look at me like I have 3 heads!

[PlainJane]

I know I have mentioned the before but I will mention it again. You have a lot of symptoms of tick borne infectious disease. Testing negative doesn't necessarily mean you don't have a tick borne disease. These infections can be very serious and debilitating.

~plainjane