Hi, I haven’t been officially diagnosed with PSA yet. I had my right hip and left shoulder replaced in the past year. I have been complaining of pain in my left knee recently. Had an MRI on Monday, saw my knee Doc yesterday, totally deteriorated patella. He said I need to get the knee replaced. Both the shoulder and knee doctors ( they are in the same practice) believe that this rapid decline of my joints is due to an autoimmune disease. I have the pitting in my nails but no skin disease. I saw a Rheumatologist here in Maine a few months ao and he didn’t feel that it was autoimmune. The orthopedic surgeons feel strongly that it is and told me to get a second opinion. Next Tuesday I am going to another Rheumatologist in Boston. Here in Maine, when you pull out the big guns, medically, you go down to Boston. I am a two time cancer survivor and I go down to Dana-Farber very six months for check ups so it’s not such a big deal for me.
My question is to everyone here in this PSA community is: what should I ask the Rheumy next Tuesday? I want to make sure I have done everything I can to find out what is wrong with me. My gut feeling is that I have Psoriatic Arthritis but if this doctor says that it isn’t even autoimmune I will have to accept it and move on. I am really miserable. The pain is so bad some times I can’t stand it. My right shoulder and left hip are starting to hurt now too. Has anyone else had multiple joint replacements like me? I hate having all this surgery but I am willing to do whatever it takes to get relief. Looking forward to hearing from all of you, thanks, Kelly
You may have already seen this, but there a quite a few folks with psoriatic arthritis (PsA) with little or no skin involvement. Nail pitting accompanied by other symptoms like joint pain, swelling, “sausage fingers” or “sausage toes”, pain in the distal joints in the fingers, deformity of the joints/ bones in the fingers, etc. can indicate PsA. There are lab tests that can help diagnose inflammatory arthritis, but no difinitive labs for PsA, though there are results that can aid in diagnoses when they appear with other symptoms. X-rays can show damage that is exclusive to PsA. Docs can also use the kind of pain a person reports to help verify the diagnosis of PsA.
I guess you want to ask to have labs drawn, comprehensive X-rays (bring copies of any recent films you may have), and make sure that the doc takes a thorough history and completes a thorough exam. He/she should examine all of your joints for tenderness, swelling, warmth, and range of motion and take a look at the nail pitting you described above. If you do not receive a comprehensive exam and testing, then that doc needs a refresher course.
Use the next few days to document your pain along with any other symptoms you may have. If you have a iPhone or iPad, there is a great app called MyRA. I just got it on the recommendation of another member here and it’s perfect for keeping track of your symptoms. Also, be sure to note any limitations you notice like difficulty opening things, dressing, cooking, etc… Make sure you keep a note for each day. This will aid the doc in the process of finding a diagnosis and prescribing treatment.
I hope this helps some. Good luck and keep me posted!
Oh .... sounds like me, khs! After years of mysterious aches and pains, my knees, suddenly, went bad. I had two knee replacements. A few years later, my feet were soooo painful. They discovered erosions, and sent me to a rheumy. She looked at my nails and said she thought it was PsA. (The nail changes were so subtle, I hadn't noticed myself.) A dermie confirmed the Psoriasis diagnosis. I have tried all of the DMARDs (mtx, sulfasalazine, hydroxychloroquine, arava) and only Arava gave me slight relief. My rheumy doesn't want to prescribe a biologic, because she believes I am not a severe case.
In September, my hip started giving me trouble. X-rays showed severe OA. By the time I got to the surgeon, in December, I needed an urgent hip replacement. The surgeon was concerned and said the damage looked inflammatory to him. He informed the rheumatologist. Dr. Rheumy still hasn't managed to fit me into her busy schedule.
Frustrated by this, and fearing that my PsA is worse than my rheumy thinks, I managed to get into the Psoriatic Arthritis Clinic at the Toronto Western Hospital for a second opinion. (This is Dr. Dafna Gladman's clinic -- she is a world authority on this disease.) I go on March 11. I trust these people to figure out what is going on with me. Maybe my PsA is mild, perhaps my knees and hips really are "just OA". But if not, I want and need aggressive treatment asap.
Meanwhile, like you, I am going for my third joint replacement. My hip and knee surgeon will soon have done 3/4 of mine, and I fear for #4.
Let us know what happens in Boston. Good luck with this, khs!
Thank you “Grumpycat” and “Seenie” for your comments and suggestions. I am picking up all my X-rays and MRIs on discs from the Maine Medical Center on Monday to take down to the doctor on Boston. He has already gotten my records or “notes” from all my doctors here in Maine pertaining to my orthopedic problems. I do have a pain app on my iPad that I have been keeping track of my symptoms. I didn’t think of actually showing it to the doctor. I was just doing it for my own benefit, the same way I keep track of my weight and what exercise I have done every day (nobody’s business but my own). Thanks again, I do feel so frustrated with this. My husband and friends are sick of hearing me complain so I hide my pain from everyone. I will report back when I know anything more. Kelly
Yes, Kelly, let us know what happens.
Best of luck … the roads should be clear by then, right?
Sherwood,
The one I recommended has different sections where you can document your pain, activites, meds, fatigue, etc. and will graph your symptoms. It’s pretty cool especially when you want to track how a new treatment is working. It also has places where you can add your own notes and pictures. I take daily photos of my hands because I have lots of issues with them.
Showing your pain log to the doc can give them an idea of what you go through in a typical day and how to best treat your pain.
Don’t hide from everyone, you’ll end up isolating yourself. Of course, no one wants to be Debbie Downer but sharing with your family helps them understand what you are going through and makes them get it when you need help. You are always welcome to “dump” here when you need to!
khsherwood said:
Thank you "Grumpycat" and "Seenie" for your comments and suggestions. I am picking up all my X-rays and MRIs on discs from the Maine Medical Center on Monday to take down to the doctor on Boston. He has already gotten my records or "notes" from all my doctors here in Maine pertaining to my orthopedic problems. I do have a pain app on my iPad that I have been keeping track of my symptoms. I didn't think of actually showing it to the doctor. I was just doing it for my own benefit, the same way I keep track of my weight and what exercise I have done every day (nobody's business but my own). Thanks again, I do feel so frustrated with this. My husband and friends are sick of hearing me complain so I hide my pain from everyone. I will report back when I know anything more. Kelly