So Roni yours has just gotten worse over the last 3 years. Mine has progressed over the last year or so. I guess I just hope it will stay the same. I think I probably take it less seriously than I should.
I was dx 15 years ago…three years after that i started having pain, pain has been spreading and getting worse since then. Developed spondylitis, sacroilliitis… which is where i’m currently having lots of issues. Mine developed slowly… but at 39 i now feel it everyday… some worse then others… some better.
So a bone scan will show tendonitis? I don’t have any joint inflammation.
Well i only had tendonitis… or so i thought. The bone scan will show inflamation in the joints in it’s beginning stages…before you can even feel it. If you have tendonitis and you suspect psa then a bonescan would show it…at least that was my experience.
I think the reason my doctor readily ordered one was because i was (and still am) being monitored for lupus and my xrays showed demineralization (which is a sign of inflammation). They have suspected lupus since i was about 16 and developed an autoimmune bleeding disorder and anemia. I only had tendon pain in my right wrist at the time which wouldn’t seem to heal. I honestly didn’t believe the dx for a couple of years… i literally thought both rhuemys were quacks since i had absolutely no pain anywhere else.
Thanks Fuzzy! I finally got an appointment - June 14th. :-/ The pain in my joints was starting to subside, until today. Really hurting. My ankles typically have edema, but the past month or so it has been REALLY bad. My legs hurt so much from my skin being stretched so much and my one shin to ankle is bright red all the time. I am on blood pressure medicine and a water pill (Lasix) and I even have been taking 2 instead of one water pill and my legs are not going down. Do others experience edema related to PsA?
Hi Reid, I don't know if my ankle edema is related to PsA or not, but I do get it, and when it is present, it's a nightmare. My physical therapist says he's never seen a case as bad I get. And yes, it causes PAIN. I asked my rheumy to review all my meds to see if something might be contributing and she zeroed in on verapamil, which is a BP med. I switched to Benicar and so far, knock wood, I haven't had the awful edema. I've had edema, but not half as bad as before. I was also using Lasix. Now I am using hydrochlorothiazide (hct), which is combined with the Benicar. One pill! YAY Benicar is an angiotensin receptor blocker and verapamil is a calcium channel blocker, so they act a little differently.
I’ve had ankle edema for years. Never really considered it could be a part of this. Hmm!
I have only experienced edema when traveling to the tropics (heat edema). I don’t have as many issues with my feet and ankles as others do though so that might be why.
Hi JacksonJ
I have fingers swollen like yours. the Rhuemy i went to said they were not ‘sausage fingers’ and there was only mild arthritis in them. My question is: Does your Doc. have you on meds stronger than NSAIDS?
CLR
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JacksonJ said:
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.
Clr, I was put on medications (Methotrexate and Leflumamede) for the whole package of issues, not just my fingers. I could not walk without a cane, shoulders were bad, extreme fatigue and blood tests showed high levels of inflammation. My fingers were the only visible sign of this disease.
Clr said:
Hi JacksonJ
I have fingers swollen like yours. the Rhuemy i went to said they were not 'sausage fingers' and there was only mild arthritis in them. My question is: Does your Doc. have you on meds stronger than NSAIDS?
CLR
/>
JacksonJ said: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.
Thanks JacksonJ
Diagnosis for PsA is so hard! Everything is so vague as far a indications for the disease.
Labs/ diagnostics: you can have PsA with either positive or negative RA factor, positive or negative for HLA-B27 (the gene for PsA, elevated or normal ESR (erythrocyte sedimentation rate) this indicates inflammation, X-ray can show destructive changes in the joints, MRI can show more detail in soft tissue involvement like tendons, bone scan can show more detailed joint destruction.
History: you can have a history of psoriasis or no history of psoriasis, show nail pitting or nail lifting, or nail thickening or none of these.
Examination: you can have dactylitis or sausage fingers and/or toes, swollen painful joints, stiffness in the joints, small nodules that accumulate on the finger joints especially the DIP joints (these are the ones closest to the nail), you can have enthesitis which is pain in the tendons where they insert into the joints (for PsA this is often found in the ankles and Achilles, but other places as well), decreased range of motion, decreased strength in the hands, pain in heels and difficulty walking, and more! Confusing, right?!
There are so many things to consider when making this diagnosis. Some things make it much easier to come up with a diagnosis like the HLA-B27 gene accompanied by “typical” symptoms like a history of psoriasis, dactylitis, nail pitting, and an elevated ESR. But not everyone fits into the “standard” mold. For example, I am positive for the HLA-B27, but have never had an elevated ESR. I show damage to one joint in my hands on X-ray, I did have dactylitis in hands and feet on my initial exam and had terrible enthesitis. I also have a long history of severe plaque psoriasis. For as much flack as I have given my first rheum, she DID diagnose me right away and begin treatment right away.
All of this confusion makes it essential to have a really good doctor! Early diagnosis leads to early treatment. Early treatment is key to preventing joint damage, and preserving your mobility, at least this is what I have read and agree with.
I encourage you to take “back-up” with you to all of your appointments. Someone who is familiar with how you are feeling, and what limitations you have developed. I think it is also important to keep a log that includes information about your pain level each day, how long your morning stiffness lasts, what basic activities you are able to do or not do, the pain meds you take and what relief they provide, a note about any symptoms you have and what joints are effected (today, my right hand was especially painful. I noticed swelling in my ring and pinkie finger and they were incredibly painful. I found it hard to open bottles today). If you have a smart phone or tablet, there are a number of apps that you can do this in and many will allow you to email a summary to yourself so that you can print the information to take it to your appointment. Having detailed information speaks volumes more than simply saying that you are in pain.
Another HUGE problem with diagnosis is finding the right doctor. Many people have to go to several different doctors to get a diagnosis so that they can start treatment. I know that this is the LAST thing you want to hear, but it is better to be prepared than to find out on your own. If your doctor won’t treat you, find another one who will. There is nothing wrong with seeking a second opinion. This is YOUR life and YOUR health we are talking about here.
I wish you the best of luck with everything. You can contact me any time if you need someone to lean on.
GrumpyCat
Wow! Great job at summing this up! I have been thinking about this over and over. What is the definitive answer to this diagnosis? I don’t want treatment for something that is diagnosed based on symptoms… Then again from what I read, I can take bits and pieces of my history and concur that I have this.
GrumpyCat said:
Diagnosis for PsA is so hard! Everything is so vague as far a indications for the disease.
Labs/ diagnostics: you can have PsA with either positive or negative RA factor, positive or negative for HLA-B27 (the gene for PsA, elevated or normal ESR (erythrocyte sedimentation rate) this indicates inflammation, X-ray can show destructive changes in the joints, MRI can show more detail in soft tissue involvement like tendons, bone scan can show more detailed joint destruction.
History: you can have a history of psoriasis or no history of psoriasis, show nail pitting or nail lifting, or nail thickening or none of these.
Examination: you can have dactylitis or sausage fingers and/or toes, swollen painful joints, stiffness in the joints, small nodules that accumulate on the finger joints especially the DIP joints (these are the ones closest to the nail), you can have enthesitis which is pain in the tendons where they insert into the joints (for PsA this is often found in the ankles and Achilles, but other places as well), decreased range of motion, decreased strength in the hands, pain in heels and difficulty walking, and more! Confusing, right?!
There are so many things to consider when making this diagnosis. Some things make it much easier to come up with a diagnosis like the HLA-B27 gene accompanied by "typical" symptoms like a history of psoriasis, dactylitis, nail pitting, and an elevated ESR. But not everyone fits into the "standard" mold. For example, I am positive for the HLA-B27, but have never had an elevated ESR. I show damage to one joint in my hands on X-ray, I did have dactylitis in hands and feet on my initial exam and had terrible enthesitis. I also have a long history of severe plaque psoriasis. For as much flack as I have given my first rheum, she DID diagnose me right away and begin treatment right away.
All of this confusion makes it essential to have a really good doctor! Early diagnosis leads to early treatment. Early treatment is key to preventing joint damage, and preserving your mobility, at least this is what I have read and agree with.
I encourage you to take "back-up" with you to all of your appointments. Someone who is familiar with how you are feeling, and what limitations you have developed. I think it is also important to keep a log that includes information about your pain level each day, how long your morning stiffness lasts, what basic activities you are able to do or not do, the pain meds you take and what relief they provide, a note about any symptoms you have and what joints are effected (today, my right hand was especially painful. I noticed swelling in my ring and pinkie finger and they were incredibly painful. I found it hard to open bottles today). If you have a smart phone or tablet, there are a number of apps that you can do this in and many will allow you to email a summary to yourself so that you can print the information to take it to your appointment. Having detailed information speaks volumes more than simply saying that you are in pain.
Another HUGE problem with diagnosis is finding the right doctor. Many people have to go to several different doctors to get a diagnosis so that they can start treatment. I know that this is the LAST thing you want to hear, but it is better to be prepared than to find out on your own. If your doctor won't treat you, find another one who will. There is nothing wrong with seeking a second opinion. This is YOUR life and YOUR health we are talking about here.
I wish you the best of luck with everything. You can contact me any time if you need someone to lean on.
GrumpyCat