So I had my second visit with my new rheumatologist today and she is not convinced that I have psoriatic arthritis. She says my nail dystrophy is not enough evidence for psoriasis and since I have not had any more "inverse" issues, she is changing my diagnosis back to inflammatory polyarthropathy.
She upped my methotrexate to 20 mg but changed it to injectable.
So, I don't know if I still belong in this club but I hope I can still hang around.
Have any of you had this experience? What do you call your "condition" ( other that very unfortunate )
I am recovering from my knee replacement, albeit slower that I had hoped. I look forward to getting out of the house more. I am still not up to driving, but my husband is a good chauffeur.
I am pretty new to this, so I can't say that I have experience with any change in Dx. I will say however, that I have had way too much experience with the medical system and that I believe that with any chronic or terminal illness, you should ALWAYS get a second opinion. My aunt went misdiagnosed for 3 years and she had RA. My father and his sister both had very rare diseases and both had difficulty getting the right Dx. Second opinion - it really isn't an insult to your doctor.
The funny thing is…this IS the second opinion. Both doctors agree there is an inflammatory arthritis, I just don’t seem to fit solidly enough in the PsA category for the current doctor who, for insurance purposes, I must currently see.
Well, first of all, you belong here whatever. You're our friend. End of discussion.
Yes, docs can get it wrong, even very wrong. And who knows ... sounds like getting a third opinion (for the 2 out of 3) is going to be difficult for you. Here's the thing, though: whatever they think it is now, the treatment is going to be the same. Further down the road, the distinction may become more important. So I wouldn't sweat it. But i WOULD be thinking ahead and looking for an opportunity to get another opinion.
Have you seen a dermatologist? Keep that in mind too, especially if you germinate another patch of inverse. If you get a diagnosis of Ps, that could clarify matters.
So, Mimi, you are not allowed to go anywhere, even when your knee lets you drive. Got that?? LOL
Hahahaaaaa, trust me, nobody will accuse me of being Speedy Gonzalez! I do plan to follow up with a dermatologist because I need to be screened for skin cancer on a regular basis, as mist of us do who are on immunosuppressive drugs. I’ve had squamous cell carcinoma on my upper thigh, twice. I will be interested to see what they have to say. Who knows what the future holds and the treatment is still the same, like you said.
Hi mimiB, A similar story for me too. My regular rheumy in my first visit four years ago diagnosed polyarticular inflammatory arthritis. He thought it might be PsA but as I had no diagnosis for psoriasis(In retrospect I know I had psoriasis but no formal dx), he spent some time ruling out all the others that he could. Meanwhile the condition developed to the point where I began DMARDs.
Earlier this year my regular rheumy was away and his colleague was very clear in confirming PsA 'no doubt' he said. At the last appointment with regular rheumy he again question marked the dx. I think some doctors are more cautious than others. I found it confusing and doubt inducing....it's difficult enough managing the symptoms let alobe a shifting dx.
But I agree with Seenie, the treatment pathway is basically the same.
I tell people who I want to tell that "I have psoriatic arthritis but some conditions can be so similar that drs sometimes move dx from one group to another....treatment the same" . Others I sometimes just say ....'I have an autoimmune condition".
I suspect your new rheumy will take a few sessions to get more definite....and then you will beback with PsA dx. What did you think about her overall?
Overall, I think she is a very good doctor. She is very thorough and spends a lot of time with us. My hubby is her patient too, he has RA. I read her office notes about my visit and she mentioned that I was very frustrated, not being able to put a name to what is causing me so much pain and disruption. That tells me she really does take my feelings an concerns to heart.
When I asked her what to say to people who don't understand why I can't carry on like a normal person, she said "Just tell them you have really bad arthritis. Or tell them it's none of their business."
We all know the latter doesn't always work so well with friends and family who don't understand why you have to back out of an even last minute or why it's hard to make plans.
She sounds like she might tick some of the other positive dr boxes by understanding how hard it is for you to not have a clear diagnosis. Hope it works out.
A little late to the discussion but wanted to add my 2 cents. I have a great rhuemy but it took me 5 years of not knowing what was wrong, being diagnosed with nothing or general inflammation, tendinitis, etc. The problem was I didn't have skin psoriasis. My nails are normal etc. However, my inflammatory symptoms were eventually unbearable. When I finally got to her based on a referral from a caring orthopedic surgeon, she did all the blood work to rule out things one by one. Eventually she diagnosed PsA based on the fact that I was negative for RA and all else AND you can actually have PsA with either no psoriasis OR preceding psoriasis by as much as years. It's rare but it does happen. I eventually developed a small dime sized patch of psoriasis like rash on my leg. She told me that in some people it only takes that much to turn on the switch, especially if you have the positive arthritis factor in your bloodwork. Google PsA with no skin psoriasis and you'll see it does exist. As others said, the treatment is the same but I was just like you! I needed a label on it because I'm not good at being compliant with meds if I feel like nobody knows whats wrong, makes me think it's all in my head. My doctor understood that about me and helped me accept the situation over time.
Very interesting. It is hard to wrap your head around taking these meds for a mystery disease! Believe me, I don’t want psoriasis. I wonder what the average time it is to present with it when the arthritis comes first.
Ditto madseason. Well said. Thank you. My experience very similar. Sometimes even now, after many years of symptoms, I have to talk myself out of thinking it is all in my head.
I've recently had my first ever psoriasis flare, nearly 4 years after the PsA diagnosis. I did have persistent, mild inverse psoriasis a long time ago but that had cleared up completely about 20 years before PsA came along.
What was interesting about the P flare is that the very worst areas occurred where the skin has always been slightly thickened, reddened, drier or itchy. My skin's pretty good, or at least it was, so I'm not talking about anything really obvious, just areas of my skin I'd long found slightly irritating.
So what I'm saying is that in retrospect I think I've had psoriasis on my feet and shins for ages, it has just been very mild, 'sub-clinical' perhaps. I'm not sure how this helps because obviously you need psoriasis that is detectable by another person to back-up a PsA diagnosis. But if you do have any constantly dry or annoying areas that don't seem to match with the rest of your skin it might be worth asking your doc to take a close look.
I initially saw my rheumy in March, 2013. His diagnosis after bloodwork was inflammatory polyarthropathy although he was leaning heavily toward a PsA dx based on my family history. I do not have psoriasis, but my dad, grandfather, great grandfather, 2 sisters, and my daughter all have it. He did not officially diagnose PsA until it was time for the biologics. Apparently, biologics can not be prescribed without a definite diagnosis. I am currently on my 8th medication (both oral and biologic) to try to find one that works...