Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I was diagnosed at the end of Sept. when I saw a Rheumy for the first time. He then retired. Anyway he put me on 6 week taper down of prednisone and 200mg of plaquenil. I felt so much better on the prednisone at the higher dose. The practice assigned me to a new Rheumy. I saw her for the first time for my 2nd visit on Thursday. She got rid of the chronic fatigue diagnosis and said of course you are tired all the time that's what pain does! But she doesn't fully believe I have RA. I only had a positive CCP antibody test and everything else was negative. Xrays of my hands were normal but feet showed osteo arthritis in my toes. So she did more inflammation blood work which came back today again normal and I had ultrasounds down of my hands and wrists on Friday. So I don't know what those show. She said that I could have a false positive for RA but she upped the plaquenil to 300mg. Why would she do that if she doesn't think it's RA? She said to help control the pain. I didn't think to ask further. blame it on brain fog. She also said that RA pain does not get worse with activity or as the day goes on. The pain level you wake up in would stay the same not get worse by bedtime. I also only have a few spots that hurt when pressed but she said they should all hurt when touched. Currently, along with the rest of my joint pain, my ankles hurt the worst feel broken when I have to walk. Hurt really bad when I walk but mild pain when not walking. She said that doesn't sound like RA. She also said that while it looks like there is swelling in my fingers w/o out blood work to indicate inflammation then it's not true swelling.
So if not RA and not Oesto then what?? I go back in March to see her again. It's the not knowing that bothers me. If the ultrasound of my hands are normal then I have no idea what direction she will go to then. She said she won't change meds to anything else if the inflammation blood work and u/s of my hands are normal. Although she didn't say if she would drop the plaquenil. I just don't know why she upped it if she doesn't think it's RA.
I have semi good and bad days but mostly bad. Currently getting over a sinus infection and stomach bug that decided to make it's rounds through our house.
So if not RA and not Oesto then what?? I go back in March to see her again. It's the not knowing that bothers me. If the ultrasound of my hands are normal then I have no idea what direction she will go to then. She said she won't change meds to anything else if the inflammation blood work and u/s of my hands are normal. Although she didn't say if she would drop the plaquenil. I just don't know why she upped it if she doesn't think it's RA.
I have semi good and bad days but mostly bad. Currently getting over a sinus infection and stomach bug that decided to make it's rounds through our house.
The fatigue causes me to fall asleep during my lunch hour at work so I got a timer for my kindle to make sure I wake up in time to get back to work. Some days are better than others and I have times I honestly don't know how I get through the day.
Hang in there. The tests don't always show everything that is going on in your body. Nobody knows your body like you do. You have to be your own advocate and write down symptoms, changes, etc so you remember them when you see the doctor.
And it took a rheumy with great patience and a willingness to keep asking questions and attending seminars to finally figure it out. With any auto-immune disorder, it's not all about tests but an equal amount of clinical observation.
Be a patient patient. It will serve you well.
As for increasing your Plaquenil, that is a drug that treats all sorts of inflammatory disorders so if it helps, that may help with the diagnosis too.....puts it into the group of disorders helped by Plaquenil. It's one of the oldest drugs in the world and it helps specific disorders so that is another clue. And you don't want to be on prednisone for any length of time. Steroids can be dangerous.
Be patient and you'll get a correct Dx before long and since you'll have to live with that Dx for a lifetime, why rush into it?
gentle hugs.........Jen (Ra for 39 years)
I wake up with terrible stiffness these days. After I take my morning meds, I feel better till just before dinner, when I start to crash. By bed time, the pain is so bad, I usually have to take a pain killer. It is a rare day these days that I don't.
I also have really bad RA damage in both feet, plus a nightmare foot reconstruction. The more I walk in the day, the more the feet hurt. A lot of times I go to bed at 6 or 7, to read, and to put my feet up.
In fact we are planning on taking a little trip, and my condition of going is to use my wheelchair. Because if I walk, the pain will be beyond belief, and my left foot is starting to curl up, nerves exposed on the bottom and the fat pads getting bigger and bigger. I tried to do some walks around our neighbourhood, and it damaged my feet even more. And the night was unbearable, the feet hurt so much.
Too bad, this last year has just damaged the left foot so much, and I am not about to get reconstructive surgery on it.
My thought is to get a different RD. That is just nonsense!
Sure it could be something different then RA, perhaps closely related.
Then ups your med? Perhaps it's to see how you respond. Yet she should have explained why.
Mornings can be worse but RA does not follow any set of rules.
Not to mention every case can be different.
Dang scary to know these doctors are treating patients & worse leading these patients to believe this garbage. No wonder so many are depressed. Another doctor contributing to DID.
Doctor Induced Depression.
To sad.
Listen to your body & follow the excellent advice from these smart folks. Remember many here have been where you are.
Sammy