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taffylinden

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 #16 
Oh, no, I'M sorry, Dolphin--totally my error. The article I posted is no longer accurate: the guidelines were actually changed in 2016 to a maximum of 5.0 mgs. per kilogram of REAL weight. That was irresponsible of me, and I apologize. 

The 2016 guidelines mean a reduced dose. 

Old Guidelines:                                                                                                                  New Guidelines (2016):

Actual weight 150 lbs, IDEAL for height                     443 mg. maximum                     Actual weight 150 lbs.        340 mg. max dose 
Actual weight 150 lbs., IDEAL weight 120 lbs.           354 mg. max                              Actual weight 120 lbs.        272 mg. max dose

And keep in mind: the incidence of retinopathy is less than 1% at 5 years and only 2% at 10 years. So the risk is still very low, even at the maximum dose. Still, the stakes are high.


Mr. Bun

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 #17 
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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 #18 
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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 #19 
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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 #20 
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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 #21 

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. 

Dolphin

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 #22 
Kathryn I'm having same problem with Rheums doubting me. I'm undiagnosed. It feels awful and I think it is the worst part of having an AI :( I have + ANA 1:320 (x5), + anti ribosmal p antibodies. At first appt with 2nd rheum I actually presented with in the office in front of them with livedo reticularis, oral sores that get infected, blue extremities, rash and hair loss and I had pics of all my other symtpoms that I didn't have at the time. But they decided no connective tissue and decreased my hcq and then I got a flare with chest pain. My concern is that like u even when I am finally successfully in getting a dx the Rheums will just take it away.
upstater

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 #23 
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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 #24 
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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"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Dolphin

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 #25 
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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 #26 
Glad you got clarity. Did any of your treatment change?
taffylinden

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 #27 
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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 #28 
 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 :) 
Dolphin

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 #29 
Yes Taffy it is ! No one wants Lupus, but I would rather have my chart say Lupus than sit there suffering.   It was so nice to get a rheum not +++ for DS BS ! ha ha. After the last rheum I wanted to quit after they said my oral sores are from bitting my lip.
Kathryn3

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 #30 
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.
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