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allydams

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 #1 
Has anyone else been faced with this for their rhem?

About 2 years ago I was diagnosed with psoriatic arthritis and was unsuccessfully treated for it. However a year later everything got worse and all my blood levels shot up and then a different rhem said it was 100% lupus and was ready to start these treatments right away. So I went to a third rhem and he said he has never seen anything like this before. That I have both lupus and psoriatic arthritis and he cannot give me a straight answer for a diagnosis.

I'm so lost and confused. He's starting me on mextrextate since that is a treatment for both diseases. I know lupus is hard to diagnose. Has anyone else faced this kinda problem and confusion.
Robinj

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 #2 
Methotrexate? Is this the same doc that wanted you to chose between Cellcept and Benlysta? I am confused as well. Have you been started on any meds?
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allydams

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 #3 
Yes im on plaquenil now. 2 a day and I'm on Prednisone 10 mg a day. This was a different doctor my third opinion. He said the belysta and cellcept was not a good idea with what all my results and symptoms are. Im going to start the mexotrexate soon I think
Robinj

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 #4 
Some folks here have had a fairly good experience w/methotrexate. Cakelady has not. Have you been on Plaquenil long and is it helping?
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allydams

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 #5 
I've been on it for a month and a half now and I think it's helping slowly but it's hard to tell on the steroids.

I just don't know what I have. The last doctor (who is known as the best) said he's never seen this before and he would diagnose me with both lupus and psoriatic arthritis and he's never seen this before in his career.

I personally think it's lupus everything fits the lupus. The psoriasis is what is throwing him off.
Robinj

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 #6 
Plaquenil takes 4-6 months to "build" in the system before you will notice any improvements. Probably the prednisone is helping. If I were you, I'd give the Plaquenil a chance to work before hitting the hardcore stuff. Especially without a firm dx and 3 Rheumatologists. Just my opinion.
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
allydams

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 #7 
Yeah I'm just waiting. It's all just so confusing
Wornwolfiegirl

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 #8 
Hi there

I was started on methotrexate and got sick, I was on another med and now plaquinil.  It is very hard to get a diagnosis of Lupus and that is good. Once you get this dx. say goodbye to life insurance, long term health insurance etc etc.

A couple things I have learned on this journey I did not chose to take, is that there are over 82 different types of autoimmune diseases.  It is not unusual to have more than one autoimmune disease.  I look at autoimmune diseases as just real scaredy cats, they can't come alone they got a bring a gang with them.  Many of us have more than one.  I have been dx. with SLE, sgrens (still can't spell it), psoriatic arthritis, hoshimotos and RA.  There is an overlap in the treatment.  However I look at autoimmune diseases as a big old pot of soup.  It is a lousy pot of soup and when you go to take a taste it stinks. 
One of the problems is that we feel we need to have a diagnosis to validate this invisible disease. 

If I were you I would try to find a rheumatologist that you like and stick with him/her. If you have a PCP have your labs sent to him/her. He/she maybe able to help with communication with the rheumatologist.

I am truly sorry that you are going through this.  I hope you feel better. Have patience with  the plaquinil.  Talk to the rheumatologist about supplements. Mine suggested fish oil and vitamin D. All that I am doing is making a difference for me.  Patience Patience Patience it is hard when you don't feel well.

allydams

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 #9 
Thank you for that. It's true. I have sojerns (can't say it) Raynard, with the lupus and psoriatic arthritis. It's just so crazy it's all out of no where and so weird to treat and pinpoint. I'm trying to be patient with the plaquenil and the whole thing. I'm waiting for everything to get better it's just hard.
Robinj

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 #10 
Keep us posted. 
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Cakelady

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 #11 
Please do not take mexotrexate I took it for years and it has caused havoc with my lungs and liver. It's a very nasty drug
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Wornwolfiegirl

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 #12 
Hi there

Yes I forgot Raynauds too for me.  I don't mean to minimize that you are unusual you really do not seem to be based on what I have read here.  You must have patience.  It takes plaquinil time to get into your system so it can work.  One day you will open your eyes and you will notice gee I think I feel a bit better.
Hang in there

aap51990

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 #13 
Hello,
I am new here.  I was diagnosed in September 2016.  My rheumatologist started me off with plaquenil and cymbalta for the pain.  As of yesterday, my labs are showing that my inflammation levels are steadily going up.  Starting Monday I will be on methatrexate.  I'm constantly tired and my knees hurt.  About 2 weeks ago I noticed that my scalp is very tender to the touch.  Some nights I cant even lay on a pillow.  I have not noticed any of my hair falling out.  The rheum dr doesnt know whats causing this.  Does anyone have any ideas?  Any feedback is helpful.  I'm still trying to understand and deal with this.  thanks

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darla627

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 #14 
i take imuran and it is very effective you might ask if you could try that. before moving on to the hard core methatrexate imuran has no side effects that i notice & my reumy checks my blood every 3 months something to think about
Mr. Bun

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 #15 
Aap51990?


Don't know how badly you are affected by Lupus.......but I think methotrexate is a pretty big gun to bring out so early after your dx.  I could be wrong......and many times I am....but it just concerns me.

Many here have taken it and been ok.......however, our lovely CakeLady had terrible results.  Not trying to second guess your doc.....only wanting you to take care.

https://www.hopkinsarthritis.org/patient-corner/drug-information/methotrexate/
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