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Mr. Bun

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 #16 
I can't take Plaquenil.  messes with my stomach.  It would make me throw up.....every two weeks, without fail.....and I would be out of commission for the whole day.

and I got many rashes in spite of it.  never cleared my psoriasis......and got pneumonia.....and lichen planus while on it.  Started out on 200mg.....and was on 400mg for over 5-6 yrs. 

that's my story.


upstater

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 #17 
Plaquenil is actually supposed to make psoriasis WORSE. 
https://www.psoriasis.org/psoriatic-arthritis/treatments/dmards

Taffy....sounds like my dose is good then ;-) I do trust my rheumatologist. 
Kathryn3

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 #18 
Today I took 300mg. That would be the correct dosage according to the guidelines . I haven't been seeing this rheumatologist for very long . My other one retired . When he first saw me he tried to talk me into going off the plaquenil altogether and I wouldn't do it . I have a feeling that because I don't look sick and my lupus is fairly mild that he doesn't really believe I'm sick. I'm sure he DOES see many patients much worse off then I am but my old rheumatologist did diagnose me with lupus and fibromyalgia 10 years ago and the plaquenil helped a lot so I know it's not "all in my mind" . I'm definitely going to see the new rheumatologist . I work a full time job . I need someone who will help me not question my diagnosis


Mr. Bun

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 #19 
it did upstater.....actually.....I found that I had more skin involvement, while taking it.

more everything involvement!!  didn't tolerate it well at all.  my eyes were ok.

but talk to Taffy about that.  not liking plaquenil much.  I hear it helps some people......but the people with many issues?  
It's a little bandaid I think.  the first step.  I envy those it helps.
taffylinden

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 #20 

I have to say, I liked Plaquenil because it didn't make me sick, as other meds did, and it definitely helped, but it didn't help prevent the iritis I was experiencing. For that, the rheumatologist added methotrexate, and THEN I got sick. By then, of course, I'd already been pulled from the Plaquenil for toxic retinopathy. 

Kathryn3, there seems to be this phenomenon with rheumatologists disputing earlier rheumatologists' diagnoses of lupus. Personally, I think it's ego. Once I had to see a different rheumatologist in the same clinic where I used to live. He tried to tell me I didn't have lupus but instead had all these symptoms from the checklist independently. When I asked him why he'd dispute the two previous opinions, he said, "I'm just trying to connect the dots differently." And I think that's the issue: a lupus diagnosis takes careful observation over years before the dots can be connected accurately. Imagine a dot-to-dot puzzle with no numbers. Unless you're incredibly lucky, you probably won't make a fire truck out of it; you could, however, just decide it's SUPPOSED to be a big tangle of hair. 

When I had a similar experience last fall, I wasn't just upset because the new rheum decided I didn't have lupus. It was that during my visit, she refused to talk to my previous rheum and dermatologist, and she didn't listen to me. 

So before you see the new rheum, see if you can get a copy of your chart from retired rheum's office to your new rheum. It might help. 

upstater

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 #21 
My lab profile is similar to yours Dolphin. I also have a positive skin biopsy for discoid....and some positive antiphospholipid antibodies and rheumatoid factor (1/3 times?). Systemically, rheumatologist says UCTD - which I am OK with. But she did say "you definitely have a rheumatological condition". I think that gives credence to acknowledging there is an autoimmune/connective tissue process - even if it is currently "undifferentiated". Much different that what you are hearing. 

Taffy.....I lol'd at the tangled mess of hair. Great symbolism!
Baker1

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 #22 
When I had to switch to a new rheumatologist, she asked who diagnosed me. When I told her, she said that he was a very good rheumatologist. She still ran all of the lab work again, but didn't question his diagnosis to my face. I think she would have run the labs no matter who said that I had lupus, unless it was one of the doctors she was working with.
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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Dolphin

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 #23 
I got my dx today of SLE from academic rheum.  I took SLE ACR dx criteria with me and highlighted all my labs counting up how many times I had low wbc, + ANA and the anti rib P and histones in addition to my pics and medical summary page. I can't say I recommend that method, but desperate times call for desperate measures  and I got them to agree to dx without needing to get their own labs. 

 I asked about eye damage.   This rheums particular opinion was that HCQ is protective of organ damage and better outcomes in patients and that annual eye exams should detect damage and doseages can then be adjusted.
upstater

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 #24 
Glad you got clarity. Did any of your treatment change?
taffylinden

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 #25 
Good for you! Those measures don't sound desperate: they sound smart! Imagine where'd be if you WEREN'T that clever! 

Since they already reduced your HDQ dose, as long as you get dilated eye exams each year, the risk is really extremely low, and well worth it, in my book.

I know it's a huge relief to get a diagnosis. Hopefully this one won't ever be questioned.
Dolphin

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 #26 
 As this was a major academic med center it was only consult, so I'm suppossed to follow up with local rheum but they wrote a letter.  I have been getting HCQ from PCP only for 2 yrs. This rheum okay'd me on 400 HCQ as they felt that for me personally, it was better for me than lower HCQ with prednisone which I would need as my external manifestations are very severe (oral infections 2x this yr).  However, all the rheum's have their own ways of doing things, so can't say for sure that another rheum won't feel differently, but hopefully not :) 
Kathryn3

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 #27 
I had a terrible time getting diagnosed . I kept going back to my GP for tests and they were all coming back normal . I wasn't tested for ANA or any of those specialized tests though . I started researching my symptoms online and they fit an autoimmune diagnosis . When I asked my GP if I could have something autoimmune he wanted to know why I thought that . I told him that I researched my symptoms on the internet. He then asked me if I always looked up diseases on the internet and then thought I had them . I then left his office and cried in my car . I know,that he didn't believe that anything was wrong with me . I finally decided to see a rheumatologist after that . . I had been putting it off because the initial consult was $400. and the specialized tests were $800.
taffylinden

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 #28 
Your GP's response was, in my opinion, a very poor one. I understand why doctors get frustrated with patients who look up symptoms on the internet and diagnose themselves. As Cakelady says, Dr. Google lost his medical license long ago. However, what your GP should have done--again in my opinion--was to focus on the SYMPTOMS that made you think you had lupus and why you were so concerned you were looking them up yourself. That would have been far more helpful than accusing you of hypochondria. Did he offer an alternative diagnosis for your symptoms? It sounds like he didn't.

I don't know, but I think if he were my doctor, I'd probably fire him after that. Just me.
Dolphin

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 #29 
Kathrynn, I'm so sorry that happend to u. It happened to me too.  However, sometimes Dr. google  and rheumatolgoy fellowship from webmd is right.    The first rheum I saw said I had JRA and needed to take NSAIDS only.  I did and the treatment was giving me side effects and worsening all my symptoms.  I asked for different treatment, the first rheum told me to increase doseage.  I did, with no resolution.  I inquired about potentional for SLE and HCQ. The rheum then fired me as a patient and told other doctors I'm a diffcult patient and question authority. I saw a second rheum after the first who said I never should have been given that dx but it wasn't even connective tissue.  The  acdemic rheum said it was good I was on HCQ even though I had to fight for it and that dx was incorrect.

With all my other 2 rheum's I only brought in a 1 pg bulleted list of all my sx's with labs and brought my pics on my laptop in a slide show, with no sucess. When the non rheum's didn't know how to treat me, I would bring in articles from a rheumatology book as oppossed to online, which they didn't mind.  At these intial visit's I did not suggests any type of dx. When bringing the diagnostic criteria, I made sure to emphasize that I'm not a doctor, I just don't understand why I'm being told I need lung involvement when that is only 1 criteria and I checked off all the ones I did have.  The fact that I was covered with livedo reticularis, hair falling out, blue extremities, rash in front of rheum, weight changes helped make my case. Going forward, I will not bring the dx criteria but show the report saying I have SLE and my pics and bulleted medical history.


Mr. Bun

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 #30 
A good doctor LISTENS to a patient, if they are open minded.  A good doctor recognizes when they are faced with something they are not familiar with.  A good doctor will readily admit that.....and refer to to someone who DOES know.

A good doctor has the knowledge that he/she doesn't know everything.....and is willing to admit freely.....that they are still learning.  Name me one human, past or present that knew/knows everything in the universe.  The problem is not with the doctors' knowledge or lack thereof;  it is the ego of the medical person that gets in the way of good practicing medicine.
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