Not RA but psoriatic arthritis : Not a great surprise... - NRAS

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Not RA but psoriatic arthritis

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Not a great surprise to me, as that's what I thought in first place. A big blue for me was when all my toenails suddenly went brown and dropped off! Plus the bilateral Achilles tendinitis, and skin issues!

Just had another depot methylprednisalone, and given leflunomide to try. Got to be better than sulfasalazine!! So annoying when docs tell you that the side effects experienced are unusual. They should come on here or read 'ask a patient!'

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8 Replies
Needforname profile image
Needforname

Hi NettieC. Out of curiosity, did your doctor initially tell you that you had RA, and then changed the prognosis to psoriatic arthritis? I can relate with your mention of doctors saying that side effects are "unusual". They told me the same about Accutane. Ten minutes in the forums reveal dozens and dozens of others with the same "unusual" or "unfounded" and "rare" side effects.

It's a shame that so many medical professionals often know less about certain things than some of their patients. They some how assume that if it's on the internet it must be untrue, and that if it comes from the mouth of a drug company spokesperson it must be legit. Hope you get things figured out.

in reply to Needforname

Hello needforname

Actually she didn't say RA to be fair. She said seronegative inflammatory arthritis, I think I just assumed, not knowing what the hell she was talking about!

It is quite annoying that it has taken so long to finally agree on a diagnosis, given that I told them about the skin, toes etc. I do tend not to be listened to, as I am also a diagnosed mentally hilarious person! A leg could drop off and it would all be put down to my bipolar illness 😝

I think doctors sometimes think their patients are half wits. I did suggest to one doctor that he should try taking my medication for a month, and then tell me about any 'unusual' side effects he experienced. He ignored me!

Mandalou profile image
Mandalou in reply to

You have really made me laugh Nettie C😂😂😂

Thanks!

I think I'm brewing up for a change in diagnosis to PsA, got my next hospital visit in January and I'm keeping a photo diary of my skin symptoms.

Not sure if it's psoriasis or allergy.

At least my current drugs ( Etanercept et al) are applicable to both types of Arthritis.

Two separate Rheumatology Consultants have given me a diagnosis of Sero negative RA but did say it's never 100% definitive.

Good luck to you.

Mx

in reply to Mandalou

Bless you. Glad I made you smile. Arthritis ain't for whimps is it? I hope you appointment goes well.

Mandalou profile image
Mandalou in reply to

It certainly ain't Nettie👍🏼

A constant battle even when it's going relatively well.

All my best to you.

Mx

mary4444 profile image
mary4444 in reply to

good answer nettiec u have wrote what a lot of us think i totaly agree with u x

gwynedd profile image
gwynedd

Hi Hidden

I've also been diagnosed with inflammatory arthrits, can I ask how long it has taken for your PsA diagnosis? I have psoriasis but only sporadically, I'm sure that I have PsA . I am being treated and I know the meds are the same but it just seems important to me to have the correct diagnosis. I'm on mtx and I have started feeling the benefit after no such luck with sulphasalizine, so I hope it works for you also.😀

in reply to gwynedd

Hello Gwynedd

It has taken seven months from seeing rheumatology. However, it was a whole year before my GP finally listened to me. I had to beg to be referred.

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