Hello everyone! Unfortunately I started having symptoms about seven months ago. Started in one elbow, included the other elbow, my wrists, thumbs and hands burning. Then my big toes started to burn. I am also soooo tired, all I want to do is sleep. Chills at night. I cannot stand the cold. My C-reactive protein is SKY high.
I kept joking to my husband to cut off my arms, they would feel better that way.
I went to the RA doc last week, she thinks that it is either RA or Lupus. I'm waiting on the labs to come back. She told me though that everything could come back negative, but if I respond to prednisone it will strongly support RA.
She started me on prednisone. That was last Thursday (August 2). How long does it take for it to work? My joints don't burn as much. They just ache in the morning. Still stiff, and will freeze up on me.
I'm really uncertain about what to expect. I'm scared of the drugs. Can anyone help me out, give me some encouragement?
You have come to the right place for encouragement.I appreciate your input. I see that you are seronegative. What was the determining factor to DX your RA?
Hi Monica and welcome,
As Cordelia said this is a awesome place. I have only been here a short while myself but realy enjoy it. There is great comfort in talking with others who understand. It could even be as simple as the doseage of prednisone. I respond well to higher doses. Keep reading on the boards and you will fill a page of questions for your doctor.
Hi
I know how you feel, being scared to start the meds, my first reaction was NO WAY...they come with pretty hefty side effects. I did eventually start methotrexate and then added enbrel when the MTX didn't quite do the trick. I'm glad I did. I feel almost normal again, and I was pretty messed up. The thing is, if you don't start the meds, the RA can continue to do crippling damage to your joints. Several people on this board use antibiotics instead of the more traditional drugs. You can always check into that if you feel better about it.
Anyway, welcome aboard!!
Linda
Hi, welcome, could you tell us how much prednisone you are taking. It helps us respond. .....I know how you feel about being dxed I was in denial for 5 years. I felt scared about plaquinel, then by the time I took methotrexate , even though I didn't like taking it, I did! It was great for me and helped me. Prednisone 'saved my life' during a recent mega flareup, I took 15 mgs, now down to 5. good luck and again WELCOME, Lynda[QUOTE=Lynda M]Hi, welcome, could you tell us how much prednisone you are taking. [/QUOTE]
I am taking 10 mg of predinsone daily. I started it last Thursday. I've seen some results. I was some degree of pain all the time in my joints...the morning being the worse, mid-day the pain and stiffness would lessen a bit...and then after I went to sleep I would wake up and just stare at my hands, amazed that they could hurt so much.
Hi and welcome to the board. I am really sorry you had to find us, but you will find amazing support here with many caring and knowledgeable people.
It really depends on the person and the dosage of prednisone on how long it takes to work. How pred are you taking??
I know and totally understand that everything is really scary right now. There are many other emotions you and your spouse will go thru as you continue your journey with this disease. This site will help both of you out in sorting thru them http://changingminds.org/disciplines/change_management/kuble r_ross/kubler_ross.htm
Also check out this site and the Spoon Theory that is there. It will help you explain to people some of the lifestyle changes you might go thru and help them to understand what you go thru in a day. http://www.butyoudontlooksick.com/the_spoon_theory/
I can not speak for Cordelia about her determining factors for RA but I am also sero-negative and can tell you my experience. Your labs are only one tool that rheumatologists use to make a diagnosis. I have been sero-negative for 13 years now but rest assured, I have a raging case of RA. They should also take into account what your xrays, your symptoms, and what you look like...like swelling etc.
Yes, the meds are scary. The major stuff like lymphomas etc are very rare. The more common side effects you get from something like methotrexate (mtx) are hair loss...mouth sores..being tired...sweating...and if you take mtx orall it can have some stomach side effects. Folic acid is prescribed when you take mtx and it helps with the side effects. Mtx does cause a folic acid deficiency so make sure you take it as instructed by your doc if it is prescribed to you. There is also what is called AP therapy (antibiotic protocol) as a treatment for RA also. www.roadback.org is a good place to find info on that. Like Linncn said, there are several people here that do AP and would be willing to help you out and answer any questions about it.
Hang in there!!! I know this is a difficult time for you and your family but you will have lots of love, caring, and support from here.
***edit to post*** We must have posted at the same time lol. About the prednisone...are they the 5mg pills you are taking? If they are, you can spread out your dosage of pred thru the day. Say like 5mg in the morning and 5mg in the evening. Or even have your husband break the 10mg pills in half if you have the 10mg pills. Getting a pill splitter is also a good idea lol.
Hi and sorry to welcome you here
I'm relatively new myself. Am seropositive, RF 219 but everything else normal. Fingers, hands, elbows and toes affected.
My only advice to you is that everyone on this site is absolutely full of information and someone here on the site told me to take it all 'one bite at a time'... this is very good advice.... there is so much that is so confusing till you can get your head around it all.
Never be afraid to ask a 'stooopid' question.... there arent any. Feel free to let us all know you its very comforting to share with people who truly understand what you are going through. My first foray onto this site in July had me in tears when I read the replies. So much lurrrrv, sympathy and most importantly empathy.
I am so thankful that y'all are here to help! Truly a blessing. Its a funny thing that I would come to experience an autoimmune disorder--My dog has "atopic dermatitis" and takes cyclosporine for it. I guess God is giving me a dose of what it feels like to be him.
That irony aside--I can split up the predisone and take it in two doses. I see that it helps w/pain a bit. The sharp stabbing burning pain is now a dull achy pain.
I was taking mobic..the RA doc dc'd that...and asked me to only take the pred. Do any of you take tylenol arthritis?
BTW Cordelia--I am night blind as well. And sometimes I get so extremely tired that I just "shut down" as my husband calls it. How do you feel now?
Rotisgirl,