So had my appt with the DR this am and do PsA pts. always have sausage finger or toes and does blood work always show positive to be diagnosed? I am going for bloodwork and xrays but she acted hesitant to confirm this and I am in such pain, I feel so exhausted and tired of trying to b heard!
I'm not sure what you mean when you ask about blood work having to be "positive" to be diagnosed. If you are referring to RH factor, then no, definitely not, you can have this horrible disease and have a negative RH factor, I think in most cases people test RH factor negative when they have it. Some people test positive for HLAB27 gene if you have it, but not everyone. Is the doctor you are seeing a rheumatologist or a general physician?? I as because my General physician misdiagnosed me for YEARS as having osteoarthritis until I demanded a referral to a Rheumatologist (actually the first Rheumy misdiagnosed me too!!!) but I pressed on and found a good doctor and finally got a diagnosis....sounds like you need a Rheumatologist! Hope that helps.
Yeah my RH FACTOR was negative and she is a rheumatologist and acted like because I didn't have the sausage finger or toes that she was hesitant to say I had this, if she doesn't help me when I go back on the 22nd I may have to find another one, but I have been thru 4 General physicians and a derm now this, thought this would be my answer just not sure now. Thks for talking it helps!
It is hard to get the diagnosis because there is no straight forward test for PsA. They have to eliminate the other possibilities before they give the diagnosis. Lucky for me, it turns out I have pretty much a textbook case other than not having the gene. I was one of the rare people who was actually happy for the diagnosis - I had gone so long with no one believing me that I was happy to know I wasn't crazy.
Can you request a bone scan? They detect the arthritis in it’s earliest stages. My family doctor had ordered xrays after recurrring tendonitis in my wrists, xray tech recommended a bone scan due to “significant demineralization”. The bone scan showed inflamation in most of my joints. The rhuemy diagnosed psa based off those tests. To be honest i didn’t believe him because i didn’t have pain in my other joints at the time. Second opinion, different rhuemy, same dx. Took a few years before the pain caught up with the inflammation i had.
There are no definitive blood tests for psa. Once it has advanced enough, they can tell from xray findings what type of arthritis it is, but who wants to wait for damage for an answer?!?! They use a point system for dx once they determine you have an inflammatory arthritis based on family history, having psoriasis, nail pitting, etc.
If you google “psoriatic arthritis criteria” you will see the criteria list and points value for each. Dx is a bit of a challenge for some, you may not have enough “criteria” for them to say which type of arthritis you have which may be why your rhuemy hesitates to say for sure. Likely they are looking for another peice of the puzzle. The most important thing is if they are treating your symptoms. Have they started treatment?
I am one criteria shy of a lupus diagnosis, so they continue to test and monitor me to see if another criteria developes. So i’ve had extensive discussions with my doctor about dx criteria. It’s a bit more complicated than most people realize when you don’t have all the “puzzle peices”. The drugs are basically the same though so a good rhuemy will start treating your symptoms while putting the puzzle together.
Thks Roni, I will ask for one, they took knee x-rays but I don't go back til the 22nd and no I haven;t had tx yet but I have had psoriasis since my early 20's and have been on Humira for about two years for that, but it doesn't help my pain. Hopefully she will start something when I go back. The Humira was from my derm doc.
I am in the beginning phase of getting a diagnosis and could use some help. I work in the medical field and so my doctor (Physician's Assistant in a family practice) thinks that I am trying to do his job. I have had mild psoriasis on my knees for 20 years. I would have flares and then it would go into a remission where you could hardly see it. In 2000 I was diagnosed with cutaneous Polyarteritis Nodosa, a rare autoimmune disease that, in my case, attacks the medium arteries of the legs. With prednisone and then 18 mos. of Imuran, I was able to achieve remission with peripheral neuropathy as a lasting side effect. I have also had myalgias where you ache so bad you feel like you are getting the flu.
This past Christmas I developed trigger finger in my right hand. Still have it. The my psoriasis really kicked in and in the past month, add to that tennis elbow, a shin splint, and tendonitis of the knee (where psoriasis is in bloom). The PA is telling me there is no such thing as tendonitis in PsA, the only joint swelling in my hands is obvious OA and he said my psoriasis is too mild to have PsA. He said there are other causes of tendonitis in multiple joints and sent me for bloodwork for diabetes and low thyroid. I knew I had no symptoms of either and the tests were negative.
I have been on so many medical sites (i.e., Johns Hopkins Rheumatology-where I was treated for autoimmune) that says psoriasis severity does not correllate to PsA involvement and multiple sites of tendonitis without joint destruction can be typical of PsA.
I need to hear from people who know. Am I crazy? Am I a hypochondriac? Please someone tell me so I know whether to get a rhematology appt. or just stop dwelling on my pain. My PA is mad at me for even suggesting that I still suspect PsA and told me to call a rheumatologist if I think that. Anyone else experience this?
Hi aching and Reid! Sorry both of you are having such a hard time with a diagnosis. It is typical, I'm afraid. Many people suffer for years, trying to get a diagnosis. There are more than 100 kinds of arthritis, and pinning down the exact one that is affecting your joints can be tough. PsA, in fact, has several different ways in which it can present.
I have read differing views about a correlation between severity of skin lesions and activity of joint involvement. I, myself, have very mild psoriasis. And, much of the literature suggests that doctors who are having a hard time with a diagnosis should meticulously search for skin lesions which may be hiding, for example, under hair on the scalp. That would seem to indicate, to me, that you don't have to have severe skin problems to have PsA. I also have a combination of PsA and osteoarthritis, which isn't uncommon.
One of the components of PsA that seems to be agreed on is that of enthesopathy--inflammation of tendons and ligaments where they insert into bones. This can also occur in other illnesses, so that, by itself, is not sufficient to support a diagnosis of PsA. But, if your PA is suggesting that tendonitis is not part of the clinical picture, IMHO, then maybe it is time to consult a rheumatologist.
PsA affects people differently. Some cases will be worse than others. This is probably part of why it is such a tough diagnosis.
Blood work does not always have to be positive for a diagnosis of PsA. In fact, there are no specific tests for PsA, although there are tests that may help to support the diagnosis. For example, an elevated sed rate may show active inflammation--but that is all it tells you; the sed rate can be elevated in many inflammatory processes. Most times, PsA is a diagnosis of exclusion, meaning if it isn't this, this or this, and occurs in the presence of this, then it must be this. Wow, I hope THAT made sense!
I struggled for years trying to get a good diagnosis and I got a variety of opinions. I KNEW something was wrong, and, like you, Reid, I began to question my ability to recognize what my body was telling me. I think a consultation with a rheumatologist is a reasonable step. It's easy to become frustrated when you are dealing with both feeling bad, and feeling as though your complaints are not being heard and understood. But if you give up, you're not giving up on the docs; you are giving up on YOU. And you are worth fighting for.
Thanks so much, Byrd. Sometimes it is hard to know what to do. With autoimmune disease sometimes anything can be a symptom and you almost get to the point where you feel like you are paranoid. LOL! I will work on getting an appointment.
Hi Reid, in June of last year, I got my first ever patches of extremely mild psoriasis on my knees - about 5 cent piece size (in aus - very small). In November I got sudden onset PsA (or sero-negative poly-articulate spondylarthropy with psoriasis) that was like being hit by a truck. My Rhuemy seems to want to reserve a technical dx (no sausage digits and a little symmetrical, so I guess RF might show up) but autoimmune inflammatory arthritis it is, and regardless of the dx, the initial treatment is the same - and you deserve to be treated. I should note I’m still in half flare, without any signs of psoriasis returning, and my tendons are always the last to respond to treatment. Maybe it is worth calling the rheumatologist?
Reid said:
I am in the beginning phase of getting a diagnosis and could use some help. I work in the medical field and so my doctor (Physician’s Assistant in a family practice) thinks that I am trying to do his job. I have had mild psoriasis on my knees for 20 years. I would have flares and then it would go into a remission where you could hardly see it. In 2000 I was diagnosed with cutaneous Polyarteritis Nodosa, a rare autoimmune disease that, in my case, attacks the medium arteries of the legs. With prednisone and then 18 mos. of Imuran, I was able to achieve remission with peripheral neuropathy as a lasting side effect. I have also had myalgias where you ache so bad you feel like you are getting the flu.
This past Christmas I developed trigger finger in my right hand. Still have it. The my psoriasis really kicked in and in the past month, add to that tennis elbow, a shin splint, and tendonitis of the knee (where psoriasis is in bloom). The PA is telling me there is no such thing as tendonitis in PsA, the only joint swelling in my hands is obvious OA and he said my psoriasis is too mild to have PsA. He said there are other causes of tendonitis in multiple joints and sent me for bloodwork for diabetes and low thyroid. I knew I had no symptoms of either and the tests were negative.
I have been on so many medical sites (i.e., Johns Hopkins Rheumatology-where I was treated for autoimmune) that says psoriasis severity does not correllate to PsA involvement and multiple sites of tendonitis without joint destruction can be typical of PsA.
I need to hear from people who know. Am I crazy? Am I a hypochondriac? Please someone tell me so I know whether to get a rhematology appt. or just stop dwelling on my pain. My PA is mad at me for even suggesting that I still suspect PsA and told me to call a rheumatologist if I think that. Anyone else experience this?
I was dx with psa about 15 years ago but have never developed psoriasis…i do have a recurring rash on my scalp but it always seems to hide when i go to the dermatologist so has never been dx… There doesn’t seem to be any coralation between my arthritis flares and the rash… arthritis is currently flaring but scalp is the best it’s been in a long time.
As far as tendonitis… that was my first and only symptom which led to my dx… so your PA is wrong… tendonitis is a huge part of psa…most of my pain is from tendon issues. I was dx by two different rhuemy’s because i insisted on a second opinion after the first dx.
Tendonitis was my first symptom as well. (Other than my psoriasis which I’ve had since I was 7). Nov. Of 2010 I started having pain, numbness in my left arm, wrist. I was scared because two of my Aunts have very advance MS. So on the urging of my parents I went to see a neuro. Turns out I has a slight pronator drift in my left arm. I was shocked. Thought it was all in my head-the symptoms that is. So with my history and symptoms he sent me for a Brain MRI. Came back clear. He urged me to have some more tests to see what else it could be. I was satisfied to know it wasn’t MS. So I moved along and it seemed to go away for a while. Then in Feb. 2011ish I started noticing the same feelings in my fight arm. I had some shoulder pain. Etc. And overall I just felt different. I for sure thought it was in my head. Then in Nov. 2011 I woke up Thanksgiving with horrible knee joint pain. And something that felt like a bruise on the side/back of my knee. From there on out I started waking up with stiffness mainly in my fingers. Each night was worse-not knowing what to expect. I knew something was wrong. I had just turned 27. Then one morning-same thing-stiff fingers. I would work them out each morning and this particular morning I noticed in between my mcp joint hurt and was a little swollen. Throughout the day the pain and swelling got worse. To the point where I could not use the whole hand. I went to urgent care the next day. The dr asked me some questions. Did xrays just to make sure. They came back good. He asked about psoriasis. He thought it was something called synovitis and explained what it was. He referred me to a rheumatologist. So I went about a month later. By this time every couple of days my fingers would get stiff red and swollen during the day. They just happened to be pretty bad the day of my appt. The dr. Saw them and asked tons of questions. I had been having pain and stiffness in my left achilles tendon. Stiffness in my spine and lower back upon waking. He told me to tell him everything and to leave out no detail. He did xrays and told me considering my history and so long as my blood tests didn’t show different that he was positive it was PsA. I was shocked. I felt like he diagnosed me so quick. But he is a board certified Rheumatologist with close to 40 years in that field so I was confident in him. Anyways just wanted to share my story to diagnosis. Its different for everybody. But to Reid especially. Tendonitis is a huge part. Like I said that was my first sign.
I've never had the sausage fingers/toes.
My blood work was all in the normal ranges (except my Vitamin D was a little low).
X-rays also didn't show anything out of the ordinary.
I have had unexplained/undiagnosed extreme fatigue off and on for years; mostly mild psoriasis (except at onset, when it covered almost my entire body); and mild joint pain here and there that was easily explained away or ignored. A couple of years ago, I asked my derm if I needed to worry about the soreness I routinely experienced in my right knee and he said no. I also had optic neuritis about 8 years ago and was tested for MS, which came up negative (in hindsight, related to PsA? maybe). Then in the last year, I've had pain in almost every joint, stiffness, soreness, tendonitis in both arms/shoulders, you name it. Sometimes it takes awhile to get all of the pieces put together for a diagnosis. If you've been going through this awhile (which many of us did/have before finally getting a dx), I'd suggest writing it all down, every symptom, going back as far as you can remember. Even things that might seem unrelated or that you think you have an explanation for. Sometimes, if the doc is looking at the just one or two pieces of the puzzle, they're not going to see the whole picture.
I have to say the pictures of “sausage finger and toes” on google seem very extreme. Does anybody get them like that. My fingers get red stiff and swollen. And they look swollen and red. But not to that extreme. It was definitely enough for the dr to notice. First thing he said when he walked in. but no where near like those pics.
Kary, attached is a picture of my fingers. My left index finger is the swollen one, since the pic was taken by a friend it's the hand on the right side. My thumbs are hidden in the pic but my thumb was twice the size of my index finger.
776-IMG2011121900037.jpg (309 KB)
IMG01296-20111212-1542.jpg
This is my puffy hand. 
lol. Oh silly PsA
Oh man! I don’t think it sent right. I’m so bad at technology!
Don't sweat it Kari.
Bone scan, bone scan, bone scan!!! I just don’t get why they aren’t automatic when people have joint problems. Drives me crazy to hear you guys are having a tough time getting a dx. One test and you know for sure if it’s an inflammatory arthritis, then they can rule out the other types with a series of blood work. Thank goodness i had an awesome family doctor and a great xray tech… i wonder if i would still be struggling for a dx without it… specially since i don’t have psoriasis. If you are able to get your doctor to order one you should. It was probably close to 3 years after i was dx before i started experiencing pain in my joints (not including the tenonditis in my wrist). I hope you are able to get some answers soon!
I never even heard of Bone scan's till now. Kinda wish I had a Delorean so I can go back to when I first had the issues with my thumb. It took several X-Rays and months before I was sent for an Ultrasound. I don't know if a Bone scan would have worked, but I can't see it being any worse then waiting 5 months.
Roni said:
Bone scan, bone scan, bone scan!!! I just don't get why they aren't automatic when people have joint problems. Drives me crazy to hear you guys are having a tough time getting a dx. One test and you know for sure if it's an inflammatory arthritis, then they can rule out the other types with a series of blood work. Thank goodness i had an awesome family doctor and a great xray tech... i wonder if i would still be struggling for a dx without it... specially since i don't have psoriasis. If you are able to get your doctor to order one you should. It was probably close to 3 years after i was dx before i started experiencing pain in my joints (not including the tenonditis in my wrist). I hope you are able to get some answers soon!