Hi folks :
I am happy to meet you, though sorry it is under these circumstances.
About 3 years ago I began having terrible pain in my hips, bilaterally. Predisone was a miracle drug for flares, but the pain always returned when I weaned down to 10 mg and lower.
At the recommendation of my GP, I began seeing an otho who xrayed my hips and said they had "some signs of arthritis" but not severe, and he was of the opinion that I had trochanteric bursitis. For two years, every three moths I would go for injections and sometimes they would help and other times the effect would only last a few weeks. Then, I started having pain in my feet and ankles, and now one knee is TERRIBLE. I have had spine surgery, an L4, L5 fusion in 2003, and I wonder if it is all connected. My bloodwork is all normal.
After two years of hip injections, the ortho recommended I see a rheumy, and so I have started down that road. he redid my bloodwork, and again, it is all within normal limits. Some of my joint pain is bilateral, some only on one side. I also have terrible fatigue :P
I have no family hx or signs of psoriasis other than some mild onycholysis on two of my nails and a scaly patch behind my ear and other nail bumps and lines. My nails used to be beautiful. I saw a dermatologist who just briefly looked at my nails and the patch behind my ear and said "I'm not ready to give you that label yet". Great.
My rheumy wanted me to see a derm before he started me on plaquinel, which I have been on for a month with no results but I understand it can take between 3 and 6 months to see any results. Two weeks ago I BEGGED for a prednisone burst, and got it, and it bought me two weeks of functionality, but now I am on the downward slide to 5mg and will be off next week.
I saw the rheumy yesterday and he wants me to give the plaquenil another six weeks before we move up to methotrexate and/or possibly Remicade. I wanted him to give me hip injections, but he said it would mask what we are trying to observe with the Plaquinel. I had a bit of a meltdown and said "I don't CARE, I just want to function!"
And he calmly said "Well I do care, because this is going to be a long term battle and I am trying to help you with the least possible toxicity with regard to medications before we move up the ladder. Please give this six more weeks and if you are not better we will get out the big guns."
He also said that while he was not going to be quick to totally discount the opinion of a dermatologist, he agreed that her assessment might not have been as thorough as it should have been, seeing as how she did not ask me to undress and did not give me a look over. I do have some irritation in my natal cleft that I have attributed to possible yeast, even though I never get yeast infections. It could be psoriatic, no ?
He said that the label ( or name of the arthritis ) is not as important as finding a treatment that works. My question is how do you fight what you have not named ? Maybe he is right, what do you think ?
Please pardon the disjointed thoughts I am throwing out here. I am just dazed and confused. I am a perinatal health educator and used to navigating people through the health care maze with regard to obstetrics and early parenting, but rheumatology is apparently very complicated.
I don't even know what questions to ask at this point. I would like to know what this is so we can kick it in the keester before it finishes kicking mine, because right now I feel pretty whooped.
Thanks for listening, and I really appreciate any thoughts or comments some of you more experienced PsAers have to offer.