Diagnosed a year ago and still confused | Arthritis Information

This forum is all new to me....I guess I'm a newbie. My PA was diagnosed about a year ago. It began with knee fluid and Baker's cysts. I had fluid drained from both knees a couple of times within a few months. The fluid showed a high white count. Knee x-rays and MRIs showed only minimal changes, probably from normal aging (I'm 57). At the same time I began having pain in my elbows, chest pain or "soreness" when taking a deep breath. Then my right wrist and fingers became swollen and painful. My blood work was RA negative. Testing for HLA-B27 showed nothing. I had been bitten by a tick and was placed on antibiotics even though my Lyme test turned up negative. This was all within about 5 months. I guess this represents a normal process of elimination for diagnosing PA. Now I am being treated by a rheumatologist with methotrexate and folic acid and occasional prednisone tapers. I know there is no definite test to diagnose psoriatic arthritis and for that reason I still have some doubt about my diagnosis. I am doing pretty well but continue to have periods of fatigue and joint aches. My latest "flare" seems to be sacroiliac pain. I guess I am just having trouble discerning whether my aches and pains are just from normal aging or from the PA. Is everyone different when it comes to symptoms and flares? My methotrexate has been increased to supposedly help control flare-ups. I worry about the long-term effects of using methotrexate. Since I never seem to feel really well anymore I wonder if I will always have to take it. Is it the norm for PA sufferes to be frustrated by all the "vagueness" of this condition? I'm considering some major changes in my diet to see if that might help. Has anyone out there tried this?

Hi and welcome Lou. You're right there is no definitive test for PsA and it can be confusing. I was diagnosed with RA and then years later diagnosed with PsA. There is a definitive type of bone damage to the fingers of individuals with PsA. I was diagnosed after xrays of ny fingers and damage showed. My PsA is more painful than the RA. Believe me it isn't pain due to the natural aging process.

Everyone is different. Pain levels and how one's body reacts to pain is different. The disease process can be in your toes or your elbows or in every joint. Flares hit for no reason. Some meds work, some don't. If you're getting relief from MXT alone then you're doing fine. Does the joint aches interfere with your day to day activities? Do you have any swelling or inflammation? Is MXT the only med you're on?

If the meds are controlling or if you've achieved remission then you'll probably have to stay on the meds. The doctor may reduce the dosage. There are many people that have been on MXT for 20 years or more, then others who never got past the first dose because of side effects.

Frustration is part of the disease process. Drives us all crazy but the one thing you'll learn is patience.

Diet has helped me quite a bit. I'm on a sugar free, low sodium, low fat, whole grains (very few) diet. Mostly all fresh fruits and vegetables, small amounts of meat, no prepackaged foods. I feel so much better when I eat this way. Believe me it's worth the trouble and money.

Keep us posted on how you're doing. Lindy

Thanks for your reply, Lindy! I was glad to hear that your diet has helped you. I'm looking at an anti-flammation diet and it also include lots of fruits and veggies and low sugar. I haven't really started it yet - just reading up before I grocery shop. I'm also wondering whether the methotrexate lowers my immunity as far as catching cold viruses, etc. I'll let you know if the diet helps! Hi Lou- I have PsA too. Yes, it can be frustrating and flares will happen. Mtx can cause both fatigue and can lower your immune level. I am HLA-b27 positive and had minimal psoriasis as a kid but major arthritis now. I have it in quite a few joints but worse in sacroilliac joints, back and neck. I am already on a diet due to celiac's which automatically excludes me from alot of processed foods. Like Lindy I probably would have tried eliminating them to to see if it made a difference. I eat alot of fresh fruits & veggies so at least mentally I think it helps. Hey, they are supposed to be good for us anyway right! Take things slow and hang in there. With the right meds your flare will be over soon. I take alot of warm baths and use heat packs. If swelling is bad I turn to ice and then later back to heat....seems to work for me. Welcome to the board and shout out anytime. Lots of folks here that will be happy to lend what info/experience they can.

Thanks for the inpput windyone! I think part of my problem comes from the fact that to my knowledge I never had psoriasis - it causes me to doubt my diagnosis. I have had neck and back pain in past years and also minimal pitting in my nails off and on. My rheumatologist reminds me that my swelling and pain have resolved when on a prednisone taper, and since being on methotrexate my knees are much, much better. I guess I am in denial (LOL). Thanks for you support.

Glad to hear that your knees are better and the taper does works for you! Yep, I still have a little denial now and then too especially when my mind thinks I can do more than my body will permit! lol !! Pitting of the nails is a definite sign of PsA. I had it for years before the rest of the arthritis symptoms started. Hang in there!

Lou, I don't have psoriasis either and was diagnosed like I said earlier from xrays of my fingers. I think the damage that showed on xray is called pencil and cup damage and is only present with psoriatic arthritis. There is a very small percentage of people with no skin involvement but they still have PsA. I spent five years in denial and that's why I have damage. Don't go into denial. Lindy

im still confused too. I just started getting Embrel injections. and the pain is still there. almost feels stronger.