I'm with Lamb, if they genuinely believe that you have undifferentiated spondlyarthropy, what the????? are they doing with your meds?
My Rheumy has his faults, one of them being that he won't diagnose PsA without obvious sausage fingers or toes that he has directly observed (I don't get these). As a result, despite fitting every CASPAR criteria, I am currently seronegative RA according to his paperwork (though in person he will admit I'm a likely PsA - Undiff Spondylarthropy - IBD overlap).
My point however is this - despite the rather fluffy nature of my non-diagnosis, my Rheumy recognised it to be inflammatory and autoimmune, so he rolled out the MTX and went through the DMARDs and onto a biologic as per the recommendations. Quite frankly I don't care what they call it - as long as it is treated.
If your medical team don't really think it is inflammatory and autoimmune, they should really square with you so you can figure out what is going on (and choose either a different approach or second opinion). If they do, then why not at least start on a DMARD that is known to work across most of the spectrum of autoimmune / inflammatory arthritis with the least side effects (which, in combination with your HLAB27 will be why Lamb has suggested sulfazalasine).
Hello, and welcome to the group. I am so sorry that you have to be here, but with the questions and concerns you have, there is no better place to be. I am so glad you found us and hope you get some answers soon.
You are right; it is time to regroup. Try to find another dermatologist. Request a biopsy of those “dry patches of skin” on your feet. Look up on the internet the best derm in your area, one that has been in practice for a while, but that has several docs on their team. You can place a request for a referral under our section for doctor referrals too. Maybe someone here lives near you and has a good one. The second step is to begin charting your symptoms and function throughout the day. Morning stiffness, how long it lasts and what you are limited in during the day. This includes: tying shoes, buckles, holding a full cup, opening jars, buttoning clothing, etc… You also want a second opinion from a Rhuem. This is where your notes will be valuable. In choosing a rheumatologist, see if you can find one who specializes in PsA, or at least has some good experience with it. You aren’t alone in having a difficult time finding one to hear you. Unfortunately, it’s a common problem.
At least now, you aren’t alone. There are thousands on this board who have been in your very same shoes and understand where you are coming from. Welcome.
And take photos of weird things that happen to your body. I usually take my doctor a sheet with photos of odd psoriasis outbreaks (where there used to be none) and odd swollen joints. He's actually quite happy to get these as they help him figure out what's gone on in the three months since our last appointment.
I really appreciate everyone’s support and suggestions. I have an appointment with another Dermatologist next week. I have some pictures of my feet at their worst to show them. It seems like it’s hard to find a dermatologist in my area that’s interested in doing much beyond Botox and beauty treatments.
Over the last 3 1/2 years I have been on MTX and Humira along with a laundry list of other meds. We stopped the MTX and Humira since I really wasn’t getting any benefit from them. Figured the risks just weren’t worth it. My current meds are the only combination that has taken some of the edge off of the pain. We have been attacking my issues in stages. First I did Synvisc injections in both knees to help that. Next up is a spinal cord stimulator for my back issues and of course getting a diagnosis for the rest of my symptoms. I have to say I’m kinda looking forward to a few weeks off work when I get the stimulator.
I really appreciate everyone's support and suggestions. I have an appointment with another Dermatologist next week. I have some pictures of my feet at their worst to show them. It seems like it's hard to find a dermatologist in my area that's interested in doing much beyond Botox and beauty treatments.
Over the last 3 1/2 years I have been on MTX and Humira along with a laundry list of other meds. We stopped the MTX and Humira since I really wasn't getting any benefit from them. Figured the risks just weren't worth it. My current meds are the only combination that has taken some of the edge off of the pain. We have been attacking my issues in stages. First I did Synvisc injections in both knees to help that. Next up is a spinal cord stimulator for my back issues and of course getting a diagnosis for the rest of my symptoms. I have to say I'm kinda looking forward to a few weeks off work when I get the stimulator. :)
