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Old 08-29-2009, 07:23 AM   #1
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tiff-cher HB User
New diagnosis of lupus

I have a new diagnosis of Lupus. My doctor started me on Prednisone, and Plaquenil, to add to the LONG med list that I already have. He said it was time to start the new meds.
The diganosis scares me even though I have thought for a long time that it was what I had.
He has already diagnosed me with Fibromyilga, and a collagen disorder, so this just adds to the picture.......
I'm scared and need some feed back from the wonderful people that I know are on HealthBoards.
He didn't tell me which diagnosis of Lupus that I have...
tiff-cher

 
Old 08-29-2009, 11:15 AM   #2
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Re: New diagnosis of lupus

Welcome, I have both FMS and Lupus also. I was treated unsuccessfully for the FMS for about 4 years before the Lupus diagnosis. I can say that personallly, the Lupus treatment seems to have helped with some of the Fibro issues as well. I actually wish they had found the Lupus first. I am still unable to get out in the real world as I would like, but my pain level is more tolerable than before. Unfortunately, I cannot take the steroids, but the Plaquenil seems to be helping. In the sticky posts above there is a wonderful article regarding the coexistence of FMS and Lupus in patients that I found very enlightening. It really shows how difficult it is to separate the two illnesses. So far, I have not noticed any new symptoms, other than the pain in joints and general malaise, and some thinning of skin and changes in hair texture. Although some of the symptoms I have do overlap with the Fibro ones. I do feel that the Lupus treatment is responsible for the few days of pain reprieve I have from time to time. I do know that I feel better knowing that there is a legitimate cause of my pain, even if I don't care for the source. In other words, I feel better knowing than not.

 
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Old 08-30-2009, 09:35 AM   #3
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Re: New diagnosis of lupus

God Bless You!!!!!!


I am calling on Monday to get into a rhuemy to get a second opinion...wish me luck and, I wish you well!!!

 
Old 08-30-2009, 07:23 PM   #4
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: New diagnosis of lupus

Tiff-cher, hi. Did your rheumie not explain well enough to make you believe in his Dx? Did he give you hardcopy of test results? Discuss how many criteria you've met? Etc.?

I was actually easily convinced! One reason is that I'd gone to my library & borrowed lupus hardcovers by Dr. Daniel Wallace, by Dr. Robert Lahita, and by Dr. Graham Hughes (British). Then my theumie described the key blood results & skin results, and also listed which of the ACR criteria I fulfilled. In other words, he did his best to explain some things about a highly complex disease. But if he'd explained little or nothing, I'd have said "HUH?", too! And wondered, "Is he RIGHT?"

Hearing the word LUPUS is scary, I agree. But I really felt much calmer after I'd read & heard my rheumie's results. I've done well on Plaquenil, too: it's helped me a lot. I've been amazed at how many of my problems virtually disappeared, like GI problems lasting 20+ years, urinary problems lasting 10+ years, migraines, anemia, etc. I still have pain & fatigue, but considerably less than before.

You mentioned you're on many meds. I definitely think you should ask to have all your meds reviewed in light of the new Dx.

A last thought: I *think* the phrase "collagen disorder" is an umbrella term, similar to "connective tissue disease", another umbrella term. Lupus is one specific condition that falls into the broad group, I think.

Let us know how you're doing with the 2nd opinion, OK? And know that you can always come here to chat. Hang in there! Bye for now, with best wishes, Vee

 
Old 08-31-2009, 04:57 AM   #5
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Re: New diagnosis of lupus

I haven't actually seen the Rhuemy yet, my doc is an internal medicine doc.....I do trust him, but I do want a 2nd opinion, I guess to put my mind at ease and to satisfy my family!

 
Old 09-02-2009, 11:15 AM   #6
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Re: New diagnosis of lupus

you mentioned you thought this is what you had for a long time.what were your first symptoms?i'm having some problems but don't know what it is.

duana

 
Old 10-01-2009, 04:22 PM   #7
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Re: New diagnosis of lupus

I had my appt with my new Rhuemy.....and she said I do not have Lupus!!!!!!! Just the Fibromyalgia that I already knew I had!

 
Old 10-01-2009, 10:14 PM   #8
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heidiclouser HB User
Re: New diagnosis of lupus

I agree a second opinion is necessary. Many (most) GPs don't know much about lupus. Some rheumys don't either so when you call ask if the doc is a lupus specialist. Good luck and keep us posted.

 
Old 10-02-2009, 02:46 AM   #9
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Tess295 HB User
Re: New diagnosis of lupus

Hi Tiff-cher,
i have also just been diagnosed with SLE and I think I am just as scared however I have decided to take it one step at a time....... Anyone out there with any info on how to stay well love to here from you

 
Old 10-02-2009, 07:58 AM   #10
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Re: New diagnosis of lupus

It concerns me that you had a diagnosis of lupus and now you don't. What criteria did your first doctor use to diagnose? Did you have lab work that suspect lupus? I don't ask for or expect a reply to those questions, I just want to bring attention to the fact that sometimes auto-immune issues are seen in multiples in an individual. I have FMS (three family members), lupus, possible Sjogren's and a sibling with post polio syndrome. All auto-immune responses. I hope that you were tested for auto-immune diseases. I just thought it strange that a doctor would prescribe plaquenill and may not have a firm basis for doing so.

 
Old 10-02-2009, 06:15 PM   #11
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Re: New diagnosis of lupus

I was diagnosed about 6yrs ago now. i took the plaquneil as well. my doctor now have me on Cellcept and 60mg of prednisone. The cellsept is fine i don't have any problems with that but the prednisone is the problem b/c i keep gaining weight. I've had the cytoxan it was terrible at the beginning but i got used to it after about 7 or 8 mos. I lost my hair but not all of it and the nausea is what makes it so bad. But all in all i'm doing much better now and so will you.

 
Old 10-02-2009, 06:18 PM   #12
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Re: New diagnosis of lupus

I've had cytoxan now my nephrologist and rhuematologist wants to try rituxan, has anyone had it? I'm nervous b/c of the side effects of the cytoxan

 
Old 10-02-2009, 09:34 PM   #13
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heidiclouser HB User
Re: New diagnosis of lupus

I have lymphoma from the cellcept and get rituxan treatments. I understand that there has been some benefit to lupies from the rituxan and have noticed some additional energy after a treatment. I've had this med for more than 2 years. In the beginning I did 1 infusion a week for 4 straight weeks and every 6 months. Now I get 1 infusion every 3 months.

 
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