Hello all, I am a 48 yr old woman just back from my second rheumy appointment. X-rays of my fingers showed 'narrowing of the dip joints 2-5 bilaterally with sclerosis and osteophytes in 4 joints. I have sclerosis bilaterally of the si joints and a plantar calcaneal enthedophyte in my foot along with degenerative changes in the first mtp of two toes. My blood work was ‘unremarkable’. I’ve had psoriasis for over 25 yrs. My rheumatologist did not even examine my joints yesterday, office visit was about 5 minutes, just felt dismissed. I have days I am exhausted and very stiff in the morning. I have a very hard time using my fingers and experience swelling. I took pictures on my cell but was told she needed to see them, I was told to stop by the office if this happens. Hard as she is only in office twice a week. I was told that my issue was OA and was sent on my way. I guess I am feeling defeated and still in pain. Thank you so much for listening and any advice would really be greatly appreciated!
I’m developing a severe allergy to those two letters ‘OA’. At this rate it could prove fatal. Okay, we’re not doctors here, perhaps your problems are all OA (which admittedly can be horribly painful and disabling). But … but but but … so many here have been told that what eventually turns out to be PsA is OA, sometimes with serious consequences in terms of joint damage that should & could have been prevented.
PsA can cause OA. That’s for sure. And your symptoms certainly sound worthy of further investigation, more thorough and perhaps more knowledgeable investigation. The way forward may well lie in getting a different rheumy, preferably one with a special interest in PsA. Additionally, if you have a dermatologist, what does he or she think? Assuming you’re in the US, I’ve heard of people accessing aggressive treatment for PsA by having it prescribed for psoriasis. Might that be a route to explore?
It really does look like you’ve been sold short. So sorry to hear that. But don’t give up, please. Perseverance is the key.
Sybil, thank you so much for your reply. I do not have a dermatologist, I have guttate psoriasis- it’s usually mild but I almost always have some patches. I guess I just ignore it. I wonder if maybe talking to a dermatologist might help. I’m confused about inflammation in these two diagnoses. My rheumy told me she needed to see inflammation to aid in diagnosis. My fingers, feet, and back were killing me when I saw her first. She looked at my joints and told me I needed an anti flammatory meds. A week after taking them my fingers looked thinner, my feet and back felt better. So how much more inflammation do I need to show her? I’m 48 and have 4 twisted fingers, how much more damage is going to occur? I think expecting a patient to just stop by the office when experiencing sausage fingers is a bit silly
Ugh, it sounds like PsA to me. But, who am I to know? Just because I have it doesn’t make me an authority. :-/ I can’t believe a rheumy would dismiss your symptoms as being OA. Not that OA isn’t painful, like Sybil said, but what about your psoriasis and stiffness and fatigue?
Yes, in the US you can get a biologic through a dermatologist–and double dose for the first 3 months–BUT, you need to bring your rheumy records and diagnosis of psoriatic arthritis to the dermy. I’m not sure, but I think your psoriasis has to cover at least 10% of your skin and psoriatic arthritis is moderate to severe.
I’m sure one can get a biologic for psoriasis only if it’s more than moderate.
‘Stop by when something looks swollen’ does sound a little unorthodox but at least it’s an option. I’d grab at any straw while researching other rheumatologists.
Hey Vogele! Sorry to hear about your struggles. Find a different rheumy would be my advice. It took five doctors, not all rheumy, before I found someone who did not think I was insane. I also have guttae and inverse psoriasis and the rashes developed after the pain. Pain began about four years ago. Worsened with time taking me to the rheumy in town, the only one, March 2015. Had two sausage toes, morning stiffness lasting for hours, pain in all joints lower than the hips, knee gave out, and was having trouble opening jars, even a cheese package because of my hands. Was told OA, after dx of RA. Changed because negative RA factor came back. Pain for months, antiinflammatories, none worked. Kept seeing him asking for more treatment. Declined. I asked could it be RA negative rheumatoid and he told me there was no such thing. I had done my research h so I knew differently. Went over to new Hampshire in June. First visit had some rash but by second visit it had exploded. Finally, a diagnosis of PsA. Dermatologist completely disagree with rheumy saying I have contact dermatitis. Started on methotrexate eight weeks ago. Rash on both arms, inner bend of my arms, and neck are gone and/or partially gone. Still awful on my legs. I have not seen a major difference in pain levels but I did have one morning this week where I was up for about fifteen minutes before I realized i was not in significant pain or that stiff. It rwtyrned but I took it as definite movement in the right direction. All if this lengthy summary to say, keep searching. I work in healthcare and have for 24 years. Not saying that some doctors are bad rather that some are more knowledgeable and younger doctors tend to be more open to the latest ideas and treatment methods. Don’t stop searching because one tells you one thing. Get a second opinion and go for it. I hope that you do and you get some answers. This is not a one size fits all illness.
Vogele, welcome here. I’m so sorry to hear about what you are living through. I think I’d be looking for a new rheumatologist as well. Two days a week …??? What are your chances of hitting it lucky when you get that sausage finger? Too much about what you’ve said sounds like PsA to me as well, especially the foot and the SI involvement.
And by the way, if your rheumatologist is looking for inflammation in your blood work, she’s got a 50/50 chance of finding it. Something like 51% of us have inflammation markers that are in the normal range. That tidbit of knowledge has got in the way of many PsA diagnoses!
MichaelWesley mentions its taking five doctors before she found one that didn’t think she was insane. So many of us have had that experience. Persist until you find a doctor with whom you are comfortable, and who tells you things that make sense. It may take a bit of time, but this is going to be a long relationship: you may as well start your search for the “keeper” now.
We’re glad you joined us! You too, MW.
PS have you found our Newbies’ Guide yet? Go to HOME, left hand (category) column, and it’s there. Some good things to read there.
Thank you both, Michaelwesley and Seenie! I can’t tell you how much hearing back from people who understand means to me. I think I need to learn how to be more assertive with people in the medical field. I have definitely looked at the newbie section, did a ton of research before my appointment. I was so surprised when rheumy didn’t even look at my joints, I should have spoken up then. I’ll keep you posted, thanks again for your support!
Definitely find a new rheumy! I had two (both terrible) before I hit upon the psa clinic in toronto (thanks again seenie). I have still been seeing my local rubbish rheumy - mainly for prescriptions, steroid injections, but saw him last week - literally in there for 1 minute - he didn’t check any joints and lectured me the whole time about giving up smoking before he gives me any more toxic Meds … I get that smoking is bad and I am really trying to cut down. I am not going to waste any more time with him. A good rheumy will take time with you, listen to you and at the very least check all your joints …
Thank you very much! I’m glad to hear that others agree with me, in that our joints should be checked at our appointments.