re diagnosed with RA and have vitamin D deficiency

[Guest guest]

it has been a long time since I posted here - been a long 2 1/2 years for me...

2 1/2 years ago my RA doc left for CA - we are here in OK... well o other RA

doctors here took my insurance...

I had been doing really well... was on Enbrel and all my blood tests had been

coming back normal - was feeling pretty good for having severe RA...

Well they finally sent me to another doctor and because of the normal blood

tests he said I didn't have RA so they took me off all of my RA meds... cold

turkey...

well I started feeling worse and worse - went back to my doc and they sent me

for tests well they were still normal so they decided that I really didn't have

RA...

so why oh why did it take me 3 and 4 hours to get moving every day... and when I

sat down during the day couldn't get back up... I was miserable and all they had

me on was an anti imflammatory and pain meds...

So then - after 2 1/2 years a new RA doctor comes into town - he takes my

insurance again... they send me to him... he diagnoses me again with RA... I am

RA positive on the one test which he said should have given the other doctors

there first clue that I had RA...

He was amazed that I was positive - he figured since they had given me such a

hard time that i had to be negative and they had problems diagnosing with

X-rays...

so then he looked at my X-rays and said - it is here and here and made me get up

so he could show me where it was ... said this way if he ever wasn't my doctor

again and I once again had this problem that I could show them...

so he started me on MTX and folic acid... it is kicking my butt - exhausted...

upset stomach and headache... but since the TB test had to be done before he

could again start the Enbrel I had to wait... but I go back to see him in Sept

and he will start the Enbrel -

I feel so vindicated... and I know that with the Enbrel I should start feeling

better this fall and that I don't have to shudder about fall/winter and spring

coming... since the only season I do half way good in right now is summer...

But there is that light at the end of the tunnel again...

I do have one other thing that they found - I have a severe Vitamin D

deficiency... has anyone else been diagnosed with this... they have me taking

50,000IUs once a week...

So for the moment the pain pills keep me a little bit afloat but my sprits are

so lifted that I have been diagnosed again and I am not a crazy person... wish I

didn't have it but it is nice to know that it isn't all in my head!!!

[Guest guest]

I, too have a vitamin D deficiency that got worse over the last year since

originally testing and finding the deficiency. The last year has increased my

uptake of the vitamin, but the test this year showed an even lower number. I

guess I have had not enough sun even though I think I spend enough time out in

it. I guess in reality....I don't. I quit using sun screen but am never out

long enough to burn. I watched Dr. Mercola's hour long video on Vitamin D and

now know there is a link between it and autoimmune disease.

Wow! 50,000 units of D once a week....How do you take that? Injection?

Prescription? I just lost my pcp, so have to find another.

My Rheumatologist is old school, but he is quite sensible. Even though my sed

rate and blood work say I am normal, he recognizes that I do have RA (visible in

hands,wrists,and feet) and has treated me for the last 6 years with

Methotrexate alone. He told me last visit that if I had not been treated as

early as I have been, I'd be debilitated. I believe him. I feel pretty good

most of the time and occasionally have to resort to Aleve for pain....that's it,

except for the fatigue, and hard to get going in the morning. I know I have RA,

but am fortunate that my doctor treated it early. He says that I won't be one

to be debilitated later in life. I am 64 and retired so I adjust to life with

RA and give myself what I need. I wish you all could do the same.

TREAT EARLY! I'll probably be on Methotrexate for always, but I can't really

complain of side effects from the drug. I am on 20mgs. a week.