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Old 01-05-2006, 07:36 PM   #1
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New to all of this...

I was recently diagnosed with lupus and what I really want to know is does it get better? I started taking Plaquanill(sp) about 8 weeks ago and I really haven't noticed much difference yet, although the fatigue seems to have subsided. I still have a lot of pain in my hands and feet. What I really want is my life back.

 
Old 01-06-2006, 04:36 AM   #2
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Re: New to all of this...

Dear 1goofymom, Fatigue reduction is what I felt first, too, when starting Plaquenil. Doctors often tell patients that it can take quite awhile to reach its optimal effect, maybe 3-4 months or even more.

I still require pain relief, even with Plaquenil, so I use NSAID's. (I tried both Vioxx & Celebrex, but neither worked as well for me as the OTC's.)

Have you had a checkup with your dr. since starting the Rx? What does he (or she) say about the pain in your hands & feet?

Hope you get some relief & continued improvement from the Plaquenil. Best wishes to you, Vee

 
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Old 01-06-2006, 09:55 PM   #3
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Re: New to all of this...

Thanks Vee for the good wishes. I have talked to my rhumatologist about the pain in my hands and feet and she wants to give the Plaquenil a chance. She said it can take as long as 6 months. She feels I may also have some arthritis related to my ulcerative colitis but wants to wait before pursuing that. One thing at a time. She's given me Vicodin for the pain, but It really only takes the edge off.
How long did it take the Plaquenil to work for you and would you say you are back to "normal". I guess I'm really just looking for hope.

 
Old 01-07-2006, 05:00 AM   #4
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Re: New to all of this...

Dear 1goofymom,

I'm NOT back to normal, not really. BUT---don't lose hope here!---my downward trajectory was halted in its tracks. I now "do" only a very narrow band of things: fatigue & pain mostly---and those are less than they were.

So you have ulcerative colitis... My eye caught that because I had 25+ years of what my drs. thought was a functional bowel disorder. I had the invasive tests repeatedly (maybe 6 times or so?), was hospitalized several times, went down to 100 lbs. often (and I'm tall!). What a stinkin' mess all that was.

And the good news on all the severe IBS-like issues for me was this: when I stared Plaquenil, it was one of the first problems to be quelled a whole lot. That & the back stiffness I could barely move through.

Of course I was also in my late 40's at this point. I suspect for me simple aging and becoming post-menopausal may have helped with my symptoms.

Do you take meds for the ulcerative colitis?

Catch you later. With further best wishes .
Vee

 
Old 01-07-2006, 05:39 PM   #5
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Re: New to all of this...

Yes, I'm on meds for the ulcerative colitis. The colitis has not been a problem at all since all this other stuff started.
It's just so frusterating not being able to operate at the same level that I did just a couple of years ago. I don't have the same drive/energy and even if I did things just plain old hurt. I suppose I could deal with it if it wasn't every day. but I guess that's where the patience comes in and hopefully the Plaquenil will make things better.
Vee, how long have you had Lupus?

 
Old 01-08-2006, 04:19 AM   #6
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Re: New to all of this...

Good morning, 1goofymom. I really don't know how long I've had lupus. I had things wrong since early childhood (pneumona, convulsions, encephalitis). Rashes at age 8 or so (bullous blistery type, really ugly). Pain along long bones with low-grade fever, with messed up bloodwork at age 12 or so. IBS from mid-20's. Headaches & urinary weirdness from early 30's. Then a new nonscarring torso rash, in red welt form for 4+ years, then in target lesion form for another 4 or 5. Also anemia in those last years.

I doctored for all this, obviously. It was finally fatigue, joint pain, and neuro-like tingling that drove me to take myself to a teaching hospital rheumie in Manhattan. That rheumie suspected the SCLE subset (subacute cutaneous lupus), cutaneous vasculitis, and possibly antiphospholipid syndrome right away; so he did more tests and also sent me to a dermatopathologist for one last skin biopsy. I'd finally turned positive for anti-Ro but was still negative for ANA, which can happen about 30% of the time in the SCLE subset, both specialists told me. I remain negative for antiphospholipid syndrome.

I know only one other woman personally with the SCLE subset, and she also ended up at a NYC teaching hospital. Her ANA finally turned positive, PLUS she tested positive for antiphospholipid syndrome ( I never did). She also had many problems from early childhood---like me, "subacute" for a very long time. Neither of us have had major organs affected. Major organ involvement, even kidney, is possible with SCLE but not as statistically common as in SLE, were were both told.

I was Dx'ed in spring 2000 & have taken Plaquenil and carefully avoided sun exposure since.

What I'd love to know is whether this slow trajectory is possible with *SLE*, also. My best guess, from what I've read, is YES. We all read that lupus is on a very wide continuum, and that milder cases tend to be much harder to Dx. I can say this: my Manhattan rheumie was the first dr. to take seriously my lifetime medical history. Based on that alone, he scored me a 3.5 on the "4 of 11" criteria, before he even got back the positive results for anti-Ro antibody.

This stuff is all very weird, no?! This post is long but I always want those struggling for answers to be aware of OTHER antibodies seen in lupus, other than the anti-DNA & anti-Sm that are part of the "4 of 11" criteria; and know about OTHER lupus rashes that aren't "malar". Best wishes. Catch you later, Vee

 
Old 01-08-2006, 03:20 PM   #7
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Re: New to all of this...

Wow, Vee, I really have a lot to learn about my own dx. All I know is that my DNA test came back positive for lupus twice. All the other stuff sounds like greek to me. My rhumatologist did say that it was a low positive and my case is considered mild, although it doesn't feel mild to me. This is my second rheumie, the first one I saw didn't really take me serioulsy and I spent almost a year with him getting nowhere and feeling worse. I started seeing a new doc in Seattle this fall and I reallly like her. She gives me the impression that she's not giving up till we have things figured out and I'm feeling better. Even thought she can't see the pain, she knows it's real for me. The other doc told me I needed to learn to deal with a certain amount of pain, after all I'm young and I've got the rest of my life ahead of me. That just didn't make any sense to me.
Thanks for taking the time to share with me. It helps me a lot to learn what I can and try to understand all of this.

Last edited by 1goofymom; 01-08-2006 at 04:21 PM.

 
Old 01-09-2006, 04:05 AM   #8
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Re: New to all of this...

Dear Izabelle, It sounds as though you are in very good hands with the 2nd Seattle rheumie. I hope she & you continue to work through your pain issues.

How long did you have Ulcerative Colitis before your lupus was Dx'ed? Only curious. Dr. Wllace in his hardcover mentions that 1-4% of SLE patients also develop UC...

Hope you're headed to a very good week, Vee

 
Old 01-09-2006, 07:21 PM   #9
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Re: New to all of this...

Today was a pretty good day (YEAH!!) I haven't had one of those in a while. Who is Dr. Wallace and should I get his book? Oh and another question, if you don't mind. Why is it that they reccomend that you stay out of the sun. I'm asking because we are plannig on going to Peurto Rico next month. I've never had a problem with the sun before, but I'm curious.
Hope you are doing well Vee.

 
Old 01-10-2006, 03:18 AM   #10
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Re: New to all of this...

Dear 1goofymom,

BOOKS, if you want to read about lupus: Dr. Daniel Wallace is a well-known "top" American rheumatologist/author, and Dr. Robert Lahita is another. Both have written books that cover what lupus is, tests, possible symptoms by body system (skin, blood, heart, lungs, kidney, CNS, etc.), diseases that resemble it, other problems that can accompany it, tests, medications, etc. I borrowed several of their books from my local library, then found one useful enough to me to buy it.

As for sun exposure: UVA and UVB can harm *some* lupus patients by (1) damaging DNA deposits that reside near the outer skin; and (2) stimulating production of anti-Ro, anti-La and anti-RNP antibodies. [This is per Dr. Wallace's book.] Damage can include skin rashes and, of course, the other symptoms possible in a lupus flare.

Apparently sun sensitivity varies pretty widely, with some people with lupus reporting nothing, but others reporting a LOT of problems. People who produce anti-Ro and anti-La antibodies are thought to be extremely photosensitive... (I personally fall in this second category.)

And if you look at the "4 of 11" diagnostic criteria [see sticky post], you'll see butterfly rash, discoid rash, and photosensitivity. Of course you could have SOME OTHER "4" or more, excluding these 3, and still have SLE.

You could just ask your rheumie point-blank for advice on sun, which is the best approach anyway on such questions. If he/she advises to take precautions: look for tightly woven fabric with long sleeves/legs; hats with tight weave & wide brims; minimize exposure in peak sun hours (10 to 3); wear good sunblock (at least SPF15) and reapply frequently; and be extra careful in the direct sun of the tropics and around water (reflection augments the sun's effect).

I wasn't bothered by sun until my 30's. At first it took 3+ months for my rashes to appear, so I didn't even correlate the rash with sun. I DID, though, get fairly immediate livedo reticularis, shakiness, headaches, joint pain, etc. But still I didn't catch on... Then it hit the point that I'd have an old rash, go out to weed the garden, and end up with a new rash on top of the old within a day or so. I say that to illustrate that in some people, photosensitivy can accelerate.

Hope this helps you maybe formulate some questions for your own dr. Best wishes! Take good care, from Vee

Last edited by VeeJ; 01-10-2006 at 03:21 AM. Reason: spelling

 
Old 01-10-2006, 03:50 AM   #11
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Re: New to all of this...

Hey goofy mom,

Just wanted to mention that you may want to also research local treatments for your symptoms, too, while you wait for the systemic treatments to kick in. For one thing, you can try paraffin wax treatments for the pain in your hands.

Instead of thinking what will make my lupus go away, think of each symptom and focus on what you can control that will help that one body area. It will help you feel better and not quite so powerless, too.

-Susan
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Old 01-10-2006, 01:26 PM   #12
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Re: New to all of this...

Thanks for the good advice. I think I will try the hand treatment tonight.

 
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