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Old 03-30-2008, 07:14 PM   #1
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Treating Early Lupus with Prednisone? Scared and looking for advice.

Hi, everybody--
Any insight would be great. I'm an unusual case, I guess. And I feel guilty that I am a probable lupus patient who feels great and has never had joint pain or other lupus symptoms like lack of energy. I do have potential malar rash, but it may also be due to rosacea because it is brought out by thermal heat more than the sun.

Symptoms:
I have highly positive ANA 1:1280+ (nucleolar) for a few months now.
Also had homogeneous 1:160.
Borderline positive rheumatoid factor,
anti DS DNA positive (and increasing slightly over past couple months). ANCA positive with atypical perinuclear pattern.
Borderline ACE positive. (I also have lung nodules and adenopathy.)
SCL 70 and ACA are negative.
No skin changes characteristic of scleroderma.
But I have had constant, albeit mild, acid reflux for three months. I'm on one medication, 40 mg of Protonix for that and it helps tremendously.
My C4 fluctuates between low normal and just below normal.
CBC panel came back normal. Doc is doing kidney blood and urine and antiphospholipid tests now.

But scary part is she asked me if I wanted to go on treatment now. She said it's Prednisone and it's a "lifelong treatment". I thought that people could go into remission at some point...that most folks do. But she said that can't be predicted. She added that Plaquenil doesn't work for months, so they always put people on Prednisone first and also possibly Plaquenil. She agreed to wait a couple more months and continue to test my blood and watch me closely before putting me on medication since I feel so great. Has anyone else gone on medication before they feel poorly? I went to a lupus seminar over the weekend, and one doc said that there was a study that showed that people with early/incomplete lupus (like I may have) do well when put on a preventative Plaquenil regimen. It supposedly helps prevent kidney disease as well as alleviate join pain, etc. I'd love to hear any thoughts on any of this.

Thanks, everybody!

 
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Old 03-31-2008, 05:09 AM   #2
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Hi. My rheumie also told me treatment will be ongoing, the hope being that your "lifelong" med will be "just" a maintenance dose of a mild one, e.g., Plaquenil. To add perspective: I tested positive for anti-Ro, which is associated with *lower* odds of kidney damage than is anti-ds-DNA. For what this is worth, Vee

P.S. Good luck with your remaining test results!

 
Old 03-31-2008, 01:30 PM   #3
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Quote:
Originally Posted by VeeJ View Post
Hi. My rheumie also told me treatment will be ongoing, the hope being that your "lifelong" med will be "just" a maintenance dose of a mild one, e.g., Plaquenil. To add perspective: I tested positive for anti-Ro, which is associated with *lower* odds of kidney damage than is anti-ds-DNA. For what this is worth, Vee

P.S. Good luck with your remaining test results!
Vee,
Thank you for your insight. I tested negative on the past ENA tests. (anti-SM, etc.) I had read about anti-Ro being associated with milder disease, too. (compared with Anti DS-DNA). Maybe my next bloodwork will provide better information on whether Prednisone is the way to go at this point or not.

Thanks again--

 
Old 03-31-2008, 03:22 PM   #4
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Hi. Did your rheumie cite the dosage of Prednisone she was thinking of, meaning was she thinking of a low dose? Did she guesstimate how long, assuming your follow-up tests show improvement, that is?

And did she really mean that you'd be on *Prednisone* lifelong (as opposed to "treatment" lifelong)? If so, like you, I'd wonder about that. But if she meant Plaquenil, that's accepted thinking today, I believe.

Strange how widely drs. differ in their response to test results, etc. I know I've seen posts here that some people with positive anti-ds-DNA can't even get a Dx, let alone an Rx! But like your rheumie, my rheumie didn't wait until things got any worse before starting me on medication. When my blood, urine & skin tests came back, I was told the plan would be to "jump all over it". So in that regard, at least your rheumie is willing & able to MOVE.

I hope your rheumie can clarify all this for you soon. Wishing you good luck! Vee

 
Old 03-31-2008, 10:28 PM   #5
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Quote:
Originally Posted by VeeJ View Post
Hi. Did your rheumie cite the dosage of Prednisone she was thinking of, meaning was she thinking of a low dose? Did she guesstimate how long, assuming your follow-up tests show improvement, that is?

And did she really mean that you'd be on *Prednisone* lifelong (as opposed to "treatment" lifelong)? If so, like you, I'd wonder about that. But if she meant Plaquenil, that's accepted thinking today, I believe.

Strange how widely drs. differ in their response to test results, etc. I know I've seen posts here that some people with positive anti-ds-DNA can't even get a Dx, let alone an Rx! But like your rheumie, my rheumie didn't wait until things got any worse before starting me on medication. When my blood, urine & skin tests came back, I was told the plan would be to "jump all over it". So in that regard, at least your rheumie is willing & able to MOVE.

I hope your rheumie can clarify all this for you soon. Wishing you good luck! Vee
Those are great questions, Vee. Unfortunately, when my doc said, "lifelong treatment" and "Prednisone" in the next sentence, I assumed she would mean I'd be on Prednisone forever. She didn't say how high a dose I'd start on. Guess I was in a bit of shock at the time. While I wait for the latest bloodwork, I am trying to get a second opinion from a local University Teaching Hospital. I just don't feel comfortable that the rheumatologist ASKED me if I wanted to go on treatment. I guess I'd feel better if I were told that it is the best course of action in my circumstances. It's just hard to stomach going on something like Prednisone, when I feel so great. (knowing the terrible side effects that most people seem to have from it) One other question, if you don't mind. How accurate are the skin tests? My doc said that in my case my skin, it tested, might not be conclusive since it is very faint, and may actually be due to rosacea.

Again, thank you for your perspective. You are very helpful.
AJ

 
Old 04-01-2008, 02:18 AM   #6
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

I'd get a second opinion before I jumped on prednisone. I was put on Prednisone right away, however, couldn't really walk or move so I needed it. I'm now on MTX and Humira and Prednisone, along with a few others. Out of all of them, I want off of the Prednisone. If you're not having the inflammation, joint pain, etc., I question why you would need this. I hope he was talking about being on long term Plaquinil instead of prednisone.

I'm also at a teaching hospital; in boston. I feel comfortable there because they're up on everything...I hope!

Best of luck and I hope you get your answers soon.

 
Old 04-01-2008, 02:34 AM   #7
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

AJ, hi. I've read that testing facial rashes is less straightforward, as your rheumie stated. First off, it's your face, which is probably harder to biopsy. Then there's the cosmetic consideration (scarring) to consider. And if the dr. chooses to biopsy some OTHER area (i.e., a lupus band test, done on nonlesional skin), I think results there are positive in a much lower percent, making a "negative" harder to interpret. i.e., you can have SLE but pretty often have a negative LBT result.

Big question: how much is certain about your LUNG FINDINGS? It's stated in the lupus hardcovers* (Dr. Daniel Wallace &/or Dr. Robert Lahita) that Plaquenil is appropriate only for non-organ-threatening lupus. So if your known LUNG PROBLEMS are indeed *lupus-related*, that ALONE may mean Prednisone is warranted. ( * These hardcovers are in most libraries & bookstores.) Maybe you could seek more info on lupus & lungs, and what your findings suggest.

Another subject: You said your ANCA is positive. What did your rheumie say that indicates?

On asking YOU to choose whether to start medication: I'm with you---I'd find that odd, esp. since your urine, APS, etc. tests aren't back yet.

Anyway, in your shoes, I'd be wondering about the same things & wanting to review & confirm before starting any medication. Did you schedule that 2nd opinion appt. with the teaching hospital rheumie? I hope you keep posting & let us know how you're doing. Hang in there! All my best, Vee

 
Old 04-01-2008, 11:15 PM   #8
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Quote:
Originally Posted by VeeJ View Post
AJ, hi. I've read that testing facial rashes is less straightforward, as your rheumie stated. First off, it's your face, which is probably harder to biopsy. Then there's the cosmetic consideration (scarring) to consider. And if the dr. chooses to biopsy some OTHER area (i.e., a lupus band test, done on nonlesional skin), I think results there are positive in a much lower percent, making a "negative" harder to interpret. i.e., you can have SLE but pretty often have a negative LBT result.

Big question: how much is certain about your LUNG FINDINGS? It's stated in the lupus hardcovers* (Dr. Daniel Wallace &/or Dr. Robert Lahita) that Plaquenil is appropriate only for non-organ-threatening lupus. So if your known LUNG PROBLEMS are indeed *lupus-related*, that ALONE may mean Prednisone is warranted. ( * These hardcovers are in most libraries & bookstores.) Maybe you could seek more info on lupus & lungs, and what your findings suggest.

Another subject: You said your ANCA is positive. What did your rheumie say that indicates?

On asking YOU to choose whether to start medication: I'm with you---I'd find that odd, esp. since your urine, APS, etc. tests aren't back yet.

Anyway, in your shoes, I'd be wondering about the same things & wanting to review & confirm before starting any medication. Did you schedule that 2nd opinion appt. with the teaching hospital rheumie? I hope you keep posting & let us know how you're doing. Hang in there! All my best, Vee
Vee, you have no idea how helpful you've been. Thanks for the great info. about facial rashes.

As far as my lung situation, I had hilar adenopathy that finally resolved on its own. None of my docs know for sure what was/is in my lungs because we decided against invasive thoracoscopy surgery. And because my lung function tests came out above average, we took a wait and see approach. Because my ACE was positive, it could be due to sarcoidosis. I have stable lung nodules, too, but those aren't caused by lupus. But the lung lymph nodes could be due to lupus. I have adenopathy in my axillary nodes, too. Biopsy of them was inconclusive. I'll definitely have to pick up one of the books you mentioned over the weekend. None of these lung findings caused me any ill effect. They only showed up accidentally last year.

About ANCA being positive, rheumatologist said it didn't confirm anything. My titers for it came out negative. So no vasculitis. My research shows that my ANCA pattern is typical of SLE, but has no definite prognostic value.

I had to ask the rheumatologist to do some additional tests. She said they're very expensive. But I asked her which ones would help determine if something is going on, if I feel well now? So that's what prompted the latest bloodwork, which I am waiting on.

I'm having to jump through hoops to get all my past year's worth of records to the teaching hospital. But I won't give up.

Thanks again for all your great advice, and have a great week--
AJ

 
Old 04-01-2008, 11:23 PM   #9
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Quote:
Originally Posted by NHCasey View Post
I'd get a second opinion before I jumped on prednisone. I was put on Prednisone right away, however, couldn't really walk or move so I needed it. I'm now on MTX and Humira and Prednisone, along with a few others. Out of all of them, I want off of the Prednisone. If you're not having the inflammation, joint pain, etc., I question why you would need this. I hope he was talking about being on long term Plaquinil instead of prednisone.

I'm also at a teaching hospital; in boston. I feel comfortable there because they're up on everything...I hope!

Best of luck and I hope you get your answers soon.
Hi--
Thanks for your response. I'm definitely working on getting a second opinion. When I heard a rheumatologist from a teaching hospital over the weekend, it showed there are definitely differences in treatment approaches.

You may be correct about my rheumatologist meaning lifelong treatment would be Prednisone for now, and down the road Plaquenil. I was disappointed when I asked her about people going into remission. She made it sound like a miracle if that would happen. I have two friends who have lupus who went into remission though. But I don't know the specific type they have. That's great that you have a teaching hospital to go to in Boston. There are a lot of smart people out there. Do you have any idea when you might be able to stop the Prednisone?

Thanks for your thoughts--

 
Old 04-02-2008, 03:34 AM   #10
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Hi, AJ. From your first posts, I didn't realize that your current rheumie had found & looked into the lung & lymph node issues you later mentioned in more detail. From the VERY LITTLE I've read about Wegener's granulomatosis, sarcoidosis, etc. (brief mentions in Dr. Wallace's hardcover & a little bit elsewhere), it appears to my *totally untrained mind* that distinguishing such conditions from SLE can be pretty tricky.

So I'm glad you're pursuing a second opinion from a teaching hospital rheumie. Your doing so makes even more sense to me now (not that it didn't before). Meanwhile, it's good that you're feeling good, and I hope you post updates when you have the time. Take good care & keep at it! Any time you want to talk, we're all here. Bye for now, Vee

 
Old 07-20-2008, 12:26 PM   #11
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

You would probably be on a very low dose Prednisone. I took really high doses of Prednisone for 13 years for severe asthma, now my asthma is doing better and I only take 5 mg of Prednisone for my lupus and scleraderma as opposed to 60mg - 80 mg for my asthma.

I know it sound scarey to have to start Prednisone being a steriod and all that you hear about it. I felt the same way when I fist started, but the benefits far outweighed the risks for me.

good luck
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Old 07-20-2008, 10:35 PM   #12
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Re: Treating Early Lupus with Prednisone? Scared and looking for advice.

Thanks very much for your thoughts. My doctor actually meant to say that she was considering starting me on systemic medication (Plaquenil) vs. Prednisone. At this point, I haven't been prescribed anything because I just have acid reflux, but no organ issues or joint pain. I have seen two rheumatologists now, and they both agree on the wait and see approach since I don't fulfill all the ACR criteria for lupus or scleraderma. And I, fortunately, still feel fine enough to jog and hike frequently. But the docs are testing my blood frequently for any changes. I'm also on aspirin each day because I tested positive for antcardiolipin antibodies. No symptoms of antiphospholipid syndrome. But it's hopefully a preventative measure.

I hope your condition is under control with the meds and that you don't have to deal with too many side effects. Enjoy your week--

 
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