New and need some help! | Arthritis Information

Hi all! I have been lurking on these boards for about a week now and decided to finally join. You all seem so helpful and informed so I am going to post my dilemma and see if anyone has any advice for me. I haven't received my results yet but here it goes.

I saw the Rheumatologist 2 weeks ago anf he ran a bunch of tests and had me make a follow up appt with him for the 22nd of this month. Well last week my feet, ankles, legs, hands and wrists swelled up huge and are hurting sooo bad! I called his office and left him a message. His nurse called me back and said he wanted to call in Medrol for me. Being a type 1 diabetic I told her I can't take steroids because it shoots my blood sugars up big time. Well she called me back again and he called in an RX for Toradol. I took it but all it did was knock me out for a couple of hours. Still having all the same symptoms but have added a few more swollen lymph nodes, low grade temp (this has been going on for a couple of months off and on now) but my joints hurt so so bad and the swelling is so bad it hurts to type or hold a pen. The swelling is so bad in my legs, ankles and feet that I can barely get my shoes on and have to take them off at my desk. I called his office again and when the nurse called me back she said that he said it sounded "viral" and to call my GP. I am so frustrated! I don't feel "sick" (viral thing) but something is so wrong! One other thing the nurse told me last week was that one of my lab results said I was very low in Vitamin D. So now I am taking 50,000 IU once a week for the next 3 months. Any help out there??Welcome nanascraps!

Sorry you are feeling so ill. I would see if I could get the appointment moved up sooner. I think I remember my RD telling me that RA inflammation can make lymph nodes swell as well. Of all the lab results to give you they only talked about vitamin D being low? Listening to your symptoms I would think your blood work would being showing high levels of inflammation.

Thanks for answering! That was the only test result they would give me. When I asked about the results of all of the other tests she said they were not all in yet and the Dr would go over them with me at my appt. When I talked to them yesterday I wanted an appt sooner and was told they had nothing sooner. So I am stuck here. He ordered tons of lab work! Things I remember are ANA , Anti-sm(?), C3 & C4 (?) and something else with I believe RNA/DNA in it SED rate, and RF. Next time you get blood drawn ask the lab to send a copy to your home also. That's what I do now. Not that I understand every little thing...it does indicate whether or not they are in range or out of range, high or low.

I'd still try and get the appt. moved up. The earlier you get on medication the better. If it is RA some of them take awhile to kick in.

I had a lot of swelling in the beginning- I looked like I had Shrek hands and ankles-feet! Elevation above hip level and wrapping my ankles with ace bandages helped a lot with the lower swelling.

Good Luck!
Welcome to the board!

Sorry you are having a time and not receiving any relief. Maybe get an appointment with your GP and ask him for some anti-inflammatories to help with the pain & swelling, since you already gave bloodwork to your RD and all. That is alls I got for you.

Changes in weather will make you flare a little worse, too. So, maybe that is the problem for the increased swelling and pain, and will get a little better in a few more days?

I hope tomorrow is a little better for you.

Keep us posted.
Thanks for all the great suggestions! I never thought to have the lab give me a copy also. I know with my gp if I want a copy of anything he prints out right then and there. I e-mailed my GP and he said "Doesn't sound viral to me but then I'm just a family Dr" He did say I could take 2 Aleve twice a day and if that doesn't help to e-mail him again. I have been elevating my legs and it does seem to help some. Is severe swelling like this a common thing with RA? I live in Northern Arizona and the weather has been wonderful!! We are in the high 70's to low 80's right now. Hi Nanascraps,

I am a type 1 diabetic too so I can empathize with you on your situation with the steroids and the blood glucose. I too have many swollen lymph nodes. My RD told me that some people exhibit swollen lymph nodes with RA. My nodes have been very large for about two years and they were even biopsied but the RD said in my case, I am exhibiting enlarged lymph nodes. I take Fentanyl patches and tramadol for the pain. Luckily I don't have a lot of swelling so I don't have to contend with that. I have been on Plaquenil for 4 months and I see some improvement so that is good. Good Luck and keep us posted...Hiking_gal
No one ever explained to me why I was blown up to the point of feeling like my skin was going to burst open and spew water. I changed doctors because I wasn't getting any answers.
I wish I could take the steroids! I have been reading different posts about how wonderful they work for the pain and swelling. But the last time I took them (for a horrible rash last year) within one day my blood sugars shot up to almost 600. Safe to say the Dr took me off of them pronto! What is really funny is that this swelling/pain, fatigue etc has been going on for over a year now and it comes and goes. It will be really bad for a couple of weeks to a month then go away and not be too bad for a couple of weeks. This time it is just so much worse. I called the Rheum. and the receptionist said she would leave a message for him to try and get me in earlier. So we'll see. My husband is so fed up with having to see me in so much pain he wants to take me down to Scottsdale to the Mayo Clinic. I guess depending on what the Rheum. says we may be headed down that way. I went to my rheumatologist on Thursday to go over my lab results and he told me that my C-rp was really high but everything else was unremarkable. He has given me a diagnosis of "autoimmune arthritis". I tried looking that up on the internet and all that comes up is Rheumatoid arthritis. He has put me on Plaquenil and Celebrex. Do I have RA? I am going to ask for a copy of my labs to see exactly what is on them and he also told me that as far as my x-rays go my feet and knees show signs of wear and I have a bone spur on each heel.

I started the Plaquenil on Friday and starting Sunday I have had major diarrhea. Yuck! I know! It says that it is one of the side affects until my body gets used to it. When I looked up Plaquenil it says that it is used to treat RA and Lupus. So everything he has said and put me on points to RA. I am wondering if maybe some of the other tests were negative and he is reluctant to give me a diagnosis of RA. So he is calling it "autoimmune arthritis". Have you ever heard of that term? There is nothing on the web about it. I had digestive unrest for the first month I took plaquenil, but that subsided and the plaquenil started working to reduce pain and inflammation at around the 2 month mark.

Rheumatoid arthritis IS an autoimmune disease, but it's not the only one. Perhaps the rheumatologist is not sure yet which flavor of arthritis you have, hence the generalized name?
That is what I was thinking. Like I said I treid looking up autoimmune arthritis and the only thing that comes up is RA and Psoriatic. I'm glad to know that the GI symptoms do go away with time. Did it work well? He also put me on Celebrex and told me to quit taking the Aleve. I wonder how long the Celebrex takes to work because I sure miss my Aleve! [QUOTE=nanascraps]That is what I was thinking. Like I said I treid looking up autoimmune arthritis and the only thing that comes up is RA and Psoriatic. I'm glad to know that the GI symptoms do go away with time. Did it work well? He also put me on Celebrex and told me to quit taking the Aleve. I wonder how long the Celebrex takes to work because I sure miss my Aleve![/QUOTE]

Plaquenil has worked really well for me. If I do have a flare, naproxen (aleve) is my NSAID of choice. Celebrex does nothing for me. I've had Mobic, Relafen, and several others, but I always come back to naproxen. Why does he want you to take Celebrex if Aleve/naproxen works well for you?
He said that the Aleve will tear up my stomach and the Celebrex works better. So far Celebrex is doing nothing for me. make sure you are taking the plaquenil with somefibrous food such as oatmeal. It will help coat the stomach and add a bit of bulk to things

let the doctor know the celebrex isn't helping and see what suggestions he makes. There are other anti inflammatories that are a bit harder on the stomach but a lot depends on how you individually react I called and left a message at the office asking about how long it takes to work and if I could maybe alternate between the Celebrex and Aleve. So we'll see what he says. Aleve seems to help so if I could just take that instead I would be happy.
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